MEpedia - User contributions [en]

Intimidation and bullying of PACE trial critics

2019-02-20T15:58:49Z

Suelala:minor changes

Engaging in the '''intimidation of PACE critics''' has taken place for many years.

[[Keith Geraghty]]: "...after I published articles that were critical of the [[PACE trial]], two of the PACE authors [[Simon Wessely|W]]&[[Michael Sharpe|S]] lodged complaints about me and my work to my host University. Emails and phone calls to ones bosses is very intimidating."<ref>{{Cite web|url=https://twitter.com/keithgeraghty/status/1098156393159376896|title=Dr Keith Geraghty on Twitter|last=Geraghty|first=Dr Keith|date=2019-02-20|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=|quote=For the record this morning, after I published articles that were critical of the PACE trial, two of the PACE authors W&S lodged complaints about me and my work to my host University. Emails and phone calls to ones bosses is very intimidating.|publisher=@keithgeraghty|at=1:44 AM}}</ref>

[[Caroline Struthers]]: "I was intimidated and upset when [[Lillebeth Larun|Larun]] wrote to my boss to complain about me when I posted @[[Julie Rehmeyer|julierehmeyer]]'s article on my personal FB page."<ref>{{Cite web|url=https://twitter.com/Good_Reports/status/1097888253070491648|title=Caroline Struthers on Twitter |last=Struthers|first=Caroline|date=2019-02-19|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=|publisher=@Good_Reports|Publisher=|quote=What about @cochranecollab 's "duty of care" to its patient advocate contributors? I was intimidated and upset when Larun wrote to my boss to complain about me when I posted @julierehmeyer's article on my personal FB page. Yet Larun, as an author, is being protected by Cochrane.|at=7:58 AM}}</ref> [[Lillebeth Larun]] is author of the [[Cochrane]] review of exercise therapy for [[chronic fatigue syndrome]]. Struthers had posted Rehmeyer's ''Stat'' article ''Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back.''<ref>{{Cite web|url=https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/|title=How bad science misled chronic fatigue syndrome patients|last=Rehmeyer|first=Julie|authorlink=|last2=|first2=|authorlink2=|date=2016-09-21|website=STAT|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2019-02-20}}</ref>

Professor [[Michael Sharpe|Sharpe]] attempted to obtain a retraction or correction<ref>{{Cite web|url=http://www.virology.ws/2019/02/18/trial-by-error-professor-sharpes-retraction-requests/|title=Trial By Error: Professor Sharpe’s Retraction Requests|website=www.virology.ws|access-date=2019-02-20}}</ref> of the article by Rehmeyer<ref>{{Cite web|url=https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/|title=How bad science misled chronic fatigue syndrome patients|date=2016-09-21|website=STAT|language=en-US|access-date=2019-02-20}}</ref>, and also of an article by Professor [[Steven Lubet|Steven Lubet]] titled ''How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma'' <ref>{{Cite web|url=http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890|title=How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma|last=Lubet|first=Steven|website=The Conversation|language=en|access-date=2019-02-20}}</ref>.

Dr Emma Reinhold: "I tweeted that I hoped PACE would be discredited and tagged Ben Goldacre, not knowing his connection with Simon Wessely. Within 3 days Simon Wessely followed me on Twitter. His wife sent me a facebook friend request and the RCGP said they had received 'complaints' and were considering cancelling the EDS Spotlight project (which I had just been appointed to run but had not received a contract at that stage) to produce the EDS toolkit for GPs. We were told by RCGP we couldn't mention fatigue in the context of EDS. We refused to comply as this is contrary to the evidence." <ref>{{Cite web|url=https://twitter.com/DrEReinhold/status/1098233146015973377|last=Reinhold|first=Emma|date=2019-02-20|website=@DrEReinhold|language=en|access-date=2019-02-20}}</ref> ''[The RCGP is the Royal College of General Practitioners in the United Kingdom]''

During a UK parliamentary debate on ME and the PACE trial, [[Carol Monaghan]] revealed that Professor Sharpe had written to tell her that her behaviour was unbecoming of an MP.<ref>{{Cite web|url=https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98|title=Parliamentlive.tv|website=parliamentlive.tv|access-date=2019-02-20}}</ref>

Professor [[Esther Crawley]] has attempted to silence and intimidate [[David Tuller]].<ref>{{Cite web|url=http://www.virology.ws/2017/11/29/trial-by-error-the-crawley-chronicles-continued/|title=Trial By Error: The Crawley Chronicles, Continued|website=www.virology.ws|access-date=2019-02-20}}</ref>
== Other attempts to suppress criticism ==

An attempt was made to block publication of a [[Journal of Health Psychology, Special Issue: The PACE Trial]]<ref>{{Cite web|url=https://journals.sagepub.com/toc/hpqa/22/9|title=Journal of Health Psychology - Volume 22, Number 9, Aug 01, 2017|website=journals.sagepub.com|language=en|access-date=2019-02-20|date=Jul 31, 2017|last=Marks|first=David F|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=|pages=1103-1105}}</ref> by claiming that it had not been [[Peer review|peer reviewed]].{{Citation needed}}

According to Professor [[Jonathan Edwards]] "If you criticize PACE in the [[United Kingdom|UK]], there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer." <ref>{{Cite web|url=https://twitter.com/MECFSNews/status/897756698303188992|title=ME/CFS News Quotes Jonathan Edwards on Twitter|last=Edwards|first=Jonathan|date=2017-08-16|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=|quote=Prof. Edwards: if you criticize the #pacetrial in the UK you risk your job.|publisher=@MECFSNews|at=2:47 AM}}</ref>

Patients that were critical of the PACE trial were targeted by a smear campaign that variously portrayed them as violent militants or activists engaging in a campaign of harassment.{{Citation needed}}

Professor James Coyne: "I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it"<ref>{{Cite web|url=https://twitter.com/CoyneoftheRealm/status/1098214345471913984|title=I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested ithttps://twitter.com/MECFSNews/status/1098207643712262152 …|last=C.Coyne|first=James|date=2019-02-20|website=@CoyneoftheRealm|language=en|access-date=2019-02-20}}</ref>.

== See also ==
* [[Ethical issues]]

* [[Journal of Health Psychology, Special Issue: The PACE Trial]]
* [[PACE trial]]
* [[Stigma]]

== References ==
<references />

Two-day cardiopulmonary exercise test

2018-12-27T07:35:55Z

Suelala:minor changes

[[File:CPET.jpg|alt=Photo of a woman walking on a treadmill while wearing a clear mask over her nose and mouth, and attached to a cart holding medical equipment.|thumb|350x350px|Cardiopulmonary Exercise Test]]
'''Two-day cardiopulmonary exercise test''' or '''2-day CPET''' is an accepted, reliable test for [[post-exertional malaise]] (PEM), one of the cardinal symptoms that distinguishes individuals with and without [[ME/CFS]].<ref name="Davenport, 2011" /> The hypothesis is that ME/CFS patients are almost unique in having a severe deterioration in the second of the two cardiopulmonary exercise tests performed on consecutive days.<ref>Logan, Russell. 2-Day CPET: A gold standard test for ME fatigue. (24 Sept 2014). ''Shoutout About ME'' blog. Retrieved from http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/</ref>

The cardiopulmonary exercise test (CPET) is the same non-invasive test given to measure the fitness levels of athletes, as well as people with cardiopulmonary illness.<ref>{{Cite journal|last=Albouaini|first=Khaled|last2=Egred|first2=Mohaned|last3=Alahmar|first3=Albert|last4=Wright|first4=David Justin|date=1 Nov 2007|title=Cardiopulmonary exercise testing and its application|url=https://pmj.bmj.com/content/83/985/675|journal=Postgraduate Medical Journal|language=en|volume=83|issue=985|pages=675–682|doi=10.1136/hrt.2007.121558|issn=0032-5473|pmc=|pmid=17890705|via=}}</ref> However, if the test is repeated 24 hours later, ME/CFS patients will fare significantly worst than they did on the first day. The [[Institute of Medicine report]] states that: "ME/CFS patients have significantly lower results on CPET [day] 2 than on CPET [day] 1 on one or more of the following parameters: VO2max (Keller et al., 2014; VanNess et al., 2007; Vermeulen et al., 2010),<ref>{{Cite journal|last=Vermeulen|first=Ruud CW|last2=Kurk|first2=Ruud M|last3=Visser|first3=Frans C|last4=Sluiter|first4=Wim|last5=Scholte|first5=Hans R|date=2010|title=Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity|url=http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-8-93|journal=Journal of Translational Medicine|language=En|volume=8|issue=1|pages=93|doi=10.1186/1479-5876-8-93|issn=1479-5876|pmc=|pmid=20937116|via=}}</ref> VO2 at ventilatory threshold (Keller et al., 2014), and maximal workload or workload at ventilatory threshold (Keller et al., 2014; Snell et al., 2013)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

Although the Institute of Medicine report states that 2-day CPET is very reliable to objectively measure [[PEM]], the [[IOM]] committee emphasized "that the CPET is not required to diagnose patients with ME/CFS. Further, this test carries substantial risk for these patients as it may worsen their condition ([[Jo Nijs|Nijs]] et al., 2010; [[Mark VanNess|VanNess]] et al., 2010)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

==Evidence==
[[Mark VanNess]], [[Christopher Snell]] and [[Staci Stevens]] of the University of the Pacific, were the first to study the two-day CPET procedure in patients with ME/CFS. In a 2007 study published in the [[Journal of Chronic Fatigue Syndrome]], they compared six ME/CFS patients with six controls. At the first CPET there were no major differences between the two groups. At the second CPET however, ME/CFS patients reached significantly lower peak oxygen consumption and oxygen consumption at aerobic threshold.<ref>{{Cite journal|last=Vanness|first=J. Mark|last2=Snell|first2=Christopher R.|last3=Stevens|first3=Staci R.|date=Jan 2007|title=Diminished Cardiopulmonary Capacity During Post-Exertional Malaise|url=https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=14|issue=2|pages=77–85|doi=10.1300/j092v14n02_07|issn=1057-3321}}</ref>

In 2010 a Dutch research group including Ruud Vermeulen and [[Frans Visser]] used the 2-day CPET in a study with 15 female ME/CFS and 15 healthy controls. Patients reached the aerobic threshold and the maximal exercise at much lower oxygen consumption than controls, an effect that was magnified during the second-day exercise test. Since levels of creatinine kinase in the blood and oxidative phosphorylation in mononuclear cells were normal in patients before and after exercise, Vermeulen et al. speculated that the lowered anaerobic threshold was not so much a result of [[Mitochondria|mitochondrial]] insufficiency, but of impaired oxygen transport to the [[Muscle|muscles]].<ref>{{Cite journal|last=Vermeulen|first=Ruud C. W.|last2=Kurk|first2=Ruud M.|last3=Visser|first3=Frans C.|last4=Sluiter|first4=Wim|last5=Scholte|first5=Hans R.|date=2010-10-11|title=Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity|url=https://www.ncbi.nlm.nih.gov/pubmed/20937116|journal=Journal of Translational Medicine|volume=8|pages=93|doi=10.1186/1479-5876-8-93|issn=1479-5876|pmc=2964609|pmid=20937116}}</ref>

In 2013 [[Christopher Snell|Snell]], [[Staci Stevens|Stevens]] and [[Mark VanNess|VanNess]] tested the 2-day CPET procedure in a larger sample of 51 ME/CFS patients and 10 heathy controls. Once again, there were no sufficient differences between the groups at the first CPET. During the exercise test on the second day however, ME/CFS patients showed much lower oxygen consumption and workload at peak exercise and at aerobic threshold. Group differences were not due to lack of effort since most participants attained the ventilatory threshold and achieved a respiratory exchange ratio of greater than or equal to 1,1.<ref name=":0">{{Cite journal|last=Snell|first=C. R.|last2=Stevens|first2=S. R.|last3=Davenport|first3=T. E.|last4=Van Ness|first4=J. M.|date=2013-06-27|title=Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome|url=https://academic.oup.com/ptj/article/93/11/1484/2735315|journal=Physical Therapy|language=en|volume=93|issue=11|pages=1484–1492|doi=10.2522/ptj.20110368|issn=0031-9023}}</ref>

In 2014 the research group of Betsy Keller used the 2-day CPET protocol in a study involving 22 ME/CVS patient. A decline on several physiological measures was found (see table), while the respiratory exchange ratio indicated maximum efforts by participants during both exercise tests.<ref name=":1">{{Cite journal|last=Keller|first=Betsy A.|last2=Pryor|first2=John Luke|last3=Giloteaux|first3=Ludovic|date=2014-04-23|title=Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment|url=https://www.ncbi.nlm.nih.gov/pubmed/24755065|journal=Journal of Translational Medicine|volume=12|pages=104|doi=10.1186/1479-5876-12-104|issn=1479-5876|pmc=4004422|pmid=24755065}}</ref>
{| class="wikitable"
! colspan="8" |Physiological changes between first and second exercise test during 2-day CPET procedure in patients with ME/CFS
|-
|
|Number of ME/CFS patients
|VO2 peak
|VO2 at VT
|Workload peak
|Workload at VT
|HR peak
|O2pulse at VT
|-
|VanNess et al. 2007.
|6
|'''-22%'''
|'''-26%'''
|?
|?
|?
|?
|-
|Vemeulen et al. 2010.
|15
|<nowiki>-6,3%</nowiki>
|<nowiki>-7,0%</nowiki>
|<nowiki>-5,3%</nowiki>
|<nowiki>-7,0%</nowiki>
|<nowiki>-1,9%</nowiki>
|'''-8,8%'''
|-
|Snell et al. 2013.
|51
|'''-5%'''
|'''-10,8%'''
|<nowiki>-7,2% </nowiki>
|'''-55,2%'''
|?
|?
|-
|Keller et al. 2014.
|22
|'''-13,8%'''
|'''-15,8%'''
|'''-12,5%'''
|'''-21,3%'''
|'''-5,9%'''
|'''-12,6%'''
|-
|Hodges et al. 2018.
|10
|<nowiki>+5,3%</nowiki>
|<nowiki>+6,1%</nowiki>
|<nowiki>-6,7%</nowiki>
|'''-11,4%'''
|<nowiki>-0,6%</nowiki>
|?
|}
In 2017, a research team form [[New Zealand]] compared the physiological responses during a 2-day CPET, in ten patients with ME/CFS, seven patients with [[Multiple sclerosis|MS]] and seventeen healthy controls. Curiously peak oxygen increased at the second exercise test in ME/CFS patients, but there was a significant reduction noticeable in workload at aerobic threshold, a decline that was not seen in MS-patients or healthy controls. According to the authors: <blockquote>“differences between MS and CFS/ME responses only became evident after a second maximal exercise test, thus suggesting that a repeated protocol is required to not only distinguish CFS/ME from HC, but also from other fatigue-related conditions, who may not suffer from postexertional malaise and have a differing delayed fatigue profile.”<ref>{{Cite journal|last=Hodges|first=L. D.|last2=Nielsen|first2=T.|last3=Baken|first3=D.|date=Jul 2018|title=Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study|url=https://www.ncbi.nlm.nih.gov/pubmed/28782878|journal=Clinical Physiology and Functional Imaging|volume=38|issue=4|pages=639–644|doi=10.1111/cpf.12460|issn=1475-097X|pmid=28782878}}</ref></blockquote>

== Use as a Biomarker ==
[[Christopher Snell|Snell]] et al. suggested 2-day CPET could be used "diagnostically as an objective indicator of an abnormal postexertion response and possibly even a [[Diagnostic biomarker|biomarker]] for the condition"<ref name=":0" />. Using the data from the two exercise tests, their research team was able to correctly classify 95% of the total sample, as a patient or healthy control.

While a unique reduction in physiological capacity was observed in ME/CFS by several studies and different research groups, sample sizes were rather small and disagreement exists on which physiological measure accurately displayed ME/CFS patients’ [[Post-exertional malaise|abnormal exertional response]].<ref name=":1" />

Another objection to the 2-day CPET as a biomarker for ME/CFS was raised by Snell et al themselves. They suggested it might be unethical<ref name=":0" /> to use this method to detect ME/CFS patients since many of these patients might suffer relapse as a result of exercise testing. In their 2010 study, 60% of ME/CFS patients reported that it took them more than 5 days to recover from a single (maximal) CPET. It is therefore possible that in some ME/CFS patients a 2-day CPET might cause a long-lasting relapse. Science-reporter and ME/CFS patient [[Simon McGrath]] for example wrote: “You couldn’t pay me enough money to take even one max test. My last relapse, which took me nearly 2 years to get over, happened after way less than maximal [[exertion]] – a 2-day test is not for everyone."<ref>{{Cite news|url=https://www.healthrising.org/blog/2014/05/20/declining-production-exercise-study-reveal-broad-decline-energy-output-chronic-fatigue-syndrome/|title=Declining Production: Exercise Study Reveals Broad Declines in Energy Output in Chronic Fatigue Syndrome - Health Rising|date=2014-05-20|work=Health Rising|access-date=2018-08-17|language=en-US}}</ref>

Others have noted that the CPET-procedure is not very practical. It cannot be used in patients with severe ME/CFS (thus excluding these patients from study) and because of cost and expertise, it may not be available to most clinicians.<ref>https://www.commondataelements.ninds.nih.gov/Doc/MECFS/03_Fatigue_Subgroup_CDE_Draft_Recommendations.pdf</ref> CPET for ME/CFS is usually not covered by insurance and can cost hundreds of dollars.<ref>{{Cite journal|last=Cotler|first=Joseph|last2=Holtzman|first2=Carly|last3=Dudun|first3=Catherine|last4=Jason|first4=Leonard A.|date=2018-09-11|title=A Brief Questionnaire to Assess Post-Exertional Malaise|url=https://www.ncbi.nlm.nih.gov/pubmed/30208578|journal=Diagnostics (Basel, Switzerland)|volume=8|issue=3|doi=10.3390/diagnostics8030066|issn=2075-4418|pmid=30208578}}</ref> For these reasons PEM is commmonly assessed using self-reporting questionnaires.

==Cost and availability==
*[[Workwell Foundation]] (United States, CA)
*[[Betsy Keller]] at Ithaca College (United States, NY) Cost is $2200. Because they are based in a college setting (not healthcare setting), they cannot process insurance (including Medicare or Medicaid), so the patient would need to work directly with their insurer about reimbursement. (private email)
*[[Laura Black]] at Hunter-Hopkins Center, Charlotte, NC
*[http://www.openmedicineinstitute.org/the-clinic.html Open Medicine Institute Clinic]
*[http://physiologic.com.au/ Physiologic 334 Scottsdale Drive, Robina, Gold Coast, Australia]
*[https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/ Many UK universities] offer standard CPETs which can be adapted for patients with ME.

==Talks and interviews==
*2013, [https://www.youtube.com/watch?v=fHulHdMPAd4 CPET Presentation by Dr. Christopher Snell, Part I][https://www.youtube.com/watch?v=piUDax7I-Ek CPET Presentation by Dr. Christopher Snell, Part II]
*2014, [https://www.youtube.com/watch?v=q_cnva7zyKM&feature=youtu.be Mark VanNess 'Exercise and ME/CFS' at Bristol Watershed. Part One]

==See also==

*[[Betsy Keller]]
*[[Christopher Snell]]
*[[Exercise]]
*[[Mark VanNess]]
*[[Post-exertional malaise]]
*[[Staci Stevens]]
==Learn more==
*[http://www.workwellfoundation.org/testing-for-disability/ The Workwell Foundation: Testing for Disability]
*2007, [http://www.name-us.org/MECFSExplainPages/2007CiccolellaLegalStressTest.pdf Legal and Scientific Considerations of the Exercise Stress Test]
*2013, [http://www.cortjohnson.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/ Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome]
*2013, [http://phoenixrising.me/archives/17902/ Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity]

==References==
<references>
<ref name="Davenport, 2011">{{Citation
| last1 = Davenport | first1 = Todd E. | authorlink1 = Todd Davenport
| last2 = Stevens | first2 = Staci R. | authorlink2 = Staci Stevens
| last3 = Baroni | first3 = K | authorlink3 =
| last4 = Vanness | first4 = J. Mark | authorlink4 = Mark VanNess
| last5 = Snell | first5 = Christopher R. | authorlink5 = Christopher Snell
| title = Diagnostic accuracy of symptoms characterizing chronic fatigue syndrome
| journal = Disabil Rehabil | volume = 33 | issue = 19-20 | page = 1768-75
| date = 2011
| pmid = 21208154
| doi = 10.3109/09638288.2010.546936
}}
</ref>
</references>

[[Category:Tests]]

Talk:Australia

2018-12-08T15:14:42Z

Suelala:added comment about primary citations, and minimising self-citation.

to avoid [https://en.wikipedia.org/wiki/Wikipedia:Lamest_edit_wars edit wars] [http://www.informationisbeautiful.net/visualizations/wikipedia-lamest-edit-wars/ etc], please can we discuss contentious topics on this page

----

-- #1 Terminology & Criteria --

(a) ME-pedia generally uses the phrase ""ME/CFS", unless there is a specific reason to differentiate between "Myalgic Encephalomyelitis (ME)" and "Chronic Fatigue Syndrome (CFS)". (refer to [http://me-pedia.org/wiki/Welcome_to_MEpedia#A_note_on_ME_v._CFS note on main page])

(b) if we have no evidence of most/many/some/few australians preferring a specific name, or diagnostic criteria,
or having a strong or weak preference, we need to use neutral words - eg "some".

-- #2 Medical Guidelines --

(a) many AUS advocacy groups list MULTIPLE guidelines, without any clear preference/endorsement. 
without evidence of a preference, we need to use neutral words.

from their websites (as of March 2016):
* Emerge - ICP, CCP, RACP (2002), Fukuda (1994), Paediatric (Jason 2006), Psychiatric (Stein 2005)
* Canberra - ICP, IOM (2015)
* South Australia - ICP, CCP, South Aust guidelines (incl CCC), Fukuda (1994)
* Queensland - no criteria listed on website
* Western Australia - CCP, Paediatric (Jason 2006), Psychiatric (Stein 2005)
* NSW - IACFS/ME 2013, ICP, CCP, Paediatric (Jason 2006), Psychiatric (Stein 2005)

(b) the phrase 'current australian guidelines' is ambiguous - we need to clarify this. 
various medical associations & govt groups use different guidelines (eg RACP, RACGP, AMA, Dept of Health, SA Dept of Health).

-- #3 evidence of lobbying --

(a) until we have evidence, we cannot claim the 'majority of state organisations' are lobbying for the ICP.

--[[User:Suelala|Suelala]] ([[User talk:Suelala|talk]]) 04:15, 28 March 2016 (PDT)

----

as per the ME-Pedia Editorial Guidelines, please use primary citations, and avoid excessive self-citation.

[[User:Suelala|Suelala]] ([[User talk:Suelala|talk]]) 10:14, 8 December 2018 (EST)

Australia

2018-12-08T15:04:24Z

Suelala:minor changes

[[File:Australia_flag.svg.png|320px|right|thumb|'''Australia''']]



There are an estimated 92,000 to 598,000 people in Australia with chronic fatigue syndrome, ME or CFS/ME or ME/CFS (based on prevalence ranges of 0.4-2.4%,<ref name="ICC2011criteria" /> depending on which definition of the condition is used).

Using the International Consensus Criteria for ME (0.4-1%), there are between 100,000 and 250,000 Australians with ME.

In Australia, most doctors use the name [[Chronic Fatigue Syndrome]] for diagnosis.

Australian patients use the terms [[Chronic Fatigue Syndrome]], [[ME/CFS]], CFS/ME, ME or [[Myalgic Encephalomyelitis]] or immune dysfunction illness.

==Medical guidelines==

The 2002 Australian chronic fatigue syndrome guidelines are widely criticised.<ref>{{Cite web|url=http://sacfs.asn.au/about/guidelines/letter_mar_7.htm|title=ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002)|website=sacfs.asn.au|access-date=2018-12-05}}</ref> <ref>{{Cite web|url=http://www.ahmf.org/guidelines.html|title=Alison Hunter Memorial Foundation: Supporting Biomedical Research Into Myalgic Encephalomyelitis/ Chronic Fatigue Sydnrome ME/CFS - Guidelines|website=www.ahmf.org|access-date=2018-12-05}}</ref> <ref>{{Cite web|url=https://meaustralia.net/2018/11/30/difference-between-australian-chronic-fatigue-syndrome-guidelines-and-me/|title=Difference between Australian chronic fatigue syndrome guidelines and ME|date=2018-11-30|website=ME Australia|language=en|access-date=2018-12-05}}</ref>

The 2002 Australian guidelines were written by by National Health and Medical Research Council (NHRMC) fellowship recipient Prof Andrew Lloyd, who sits on the review committees for NHMRC grant applications.<ref name="#MEACTION20160120ahd" />

The NHMRC website lists resources for clinicians, including the IOM, CCC and IOM criteria, but also including recommendations for exercise, cognitive behavioural therapy and antidepressants.<ref>{{Cite news|url=https://meaustralia.net/2018/09/26/australian-government-committee-on-me-and-chronic-fatigue-syndrome/|title=Australian committee on ME and chronic fatigue syndrome nearly finished report|date=2018-09-26|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>

A government-appointed advisory committee is in the process of recommending whether new clinical guidelines should be developed to replace the outdated Australian guidelines.<ref>{{Cite news|url=https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/|title=Australian government’s ME and CFS advisory committee|date=2018-04-23|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref> Their draft report is due out in December 2018.

Some patients are lobbying for the [[International Consensus Criteria]] to be adopted<ref>{{Cite news|url=https://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/|title=Australia: Ask the medical research council to fund studies - #MEAction|date=2016-03-14|work=#MEAction|access-date=2018-10-02|language=en-US}}</ref>. Some suggested letter templates have been offered for use [http://www.meaction.net/2016/03/10/australia-write-your-own-letter-to-a-politician/ here] and [http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/ here].

===Patient groups===

The [[International Consensus Criteria | International Consensus Primer]] is listed by all organisations, except Western Australia's ME/CFS/Lyme Association, which lists the [[Canadian Consensus Criteria]].

One of the NSW websites lists the [[International Consensus Criteria | International Consensus Primer]], [[ME/CFS: A Primer For Clinical Practitioners | IACFS/ME Clinical]], the [http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01 2006 Paediatric Criteria]<ref name="JasonL2006paed" />, and the [[South Australian ME/CFS Guidelines]]<ref name="SthAustGuidelines" /> but is not clear on which one it endorses.

Some state organisations, [[NCNED]] and some patients are lobbying<ref name="#MEACTION20160314amrc" /> for the 2002 RACP Australian guidelines<ref name="RACP2002" /> to be replaced with the [[International Consensus Criteria]].

===Australian medical associations===
*The Royal Australasian College of Physicians (RACP) published guidelines in 2002, in the Australian Medical Journal.<ref name="RACP2002" />
*The Royal Australasian College of General Practitioners (RACGP) published a guideline in 2015 which recommends [[Graded Exercise Therapy]].<ref name="RACGP2015guide" /> Their magazine Australian Family Practitioner (AFP) has published articles about [[ME/CFS]],<ref name="AFPlist" /> including a 2013 article that recommends [[Graded exercise therapy]] and [[Cognitive behavioral therapy]].<ref name="AFP201304" />
*The Australian Medical Association (AMA) website recommends [[Graded Exercise Therapy]].<ref name="AMA20040503" />

===National health department===
* [http://health.gov.au Department of Health]
* [http://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs Direct information page on CFS from Department of Health]

===National Health and Medical Research Council===
The [http://nhmrc.gov.au NHMRC] funds health and medical research, and develops health advice & guidelines. It is part of the Australian Department of Health.

In 2018 the NHMRC appoointed an ME and CFS advisory committee<ref>{{Cite news|url=https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/|title=Australian government’s ME and CFS advisory committee|date=2018-04-23|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>, including [[Andrew Lloyd]], [[Suzanne Broadbent,]] [[Sonya Marshall-Gradisnik]] and [[Kathy Rowe]].

The committee is advising the government on current research, gaps in research and whether the 2002 clinical guidelines for doctors should be revised.The NHMRC did not put out a call for applications for positions on the advisory committee, unlike the USA’s Department of Health and Human services does for it’s [https://www.hhs.gov/ash/advisory-committees/cfsac/notices/index.html Chronic Fatigue Syndrome Advisory Committee]. Nor did it follow the UK example and hold [https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs workshops with stakeholders] before recruiting a guideline committee. Their report is due to be open for public consultation by the end of 2018.

===State and territory health departments===
* Victoria - [https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs Better Health - Chronic Fatigue Syndrome] - information for the public
* ACT
* NSW
* South Australia
* Northern Territory
* Queensland
* Tasmania
* Western Australia

==Health insurance==

===Government health insurance===
The Australian government subsidises most medical appointments, some hospital services, and some medications.
*[https://www.humanservices.gov.au/customer/dhs/medicare Medicare]
*[https://www.humanservices.gov.au/customer/services/medicare/medicare-safety-net Medicare Safety Net]
*[http://www.pbs.gov.au/info/about-the-pbs Pharmaceutical Benefits Scheme]

===Private health insurance===

==Social security and disability benefits==
*A [https://www.humanservices.gov.au/customer/services/centrelink/disability-support-pension Disability Support Pension] is available through Centrelink for people meeting strict criteria of dysfunction.
*[https://www.ndis.gov.au/index.html National Disability Insurance Scheme]

==Access to care==
((How many hospitals & doctors, which diagnose and treat ME (estimate):))
((Rehabilitation offers for ME sufferers: ))

==Patient groups==
There is no national ME or CFS organisation in Australia, however there are patient organisations in each state and territory.

*[[Emerge Australia]] (formerly ME/CFS Victoria, Tasmania & Northern Territory) which has 3 paid staff (population 6.5 million)
*[http://www.mecfscanberra.org.au ACT ME/Chronic Fatigue Syndrome Society] which has 1 paid staff (population 0.4 million)
*[http://sacfs.asn.au ME/CFS Australia (SA) Inc]
*[http://www.mecfsfmq.org.au/home/ ME/CFS/FM Support Association, Queensland]
*[http://www.mecfswa.org.au ME/CFS and Lyme Society of WA]
*[http://www.mecfsnsw.org.au/ The ME/CFS & FM Association, NSW]
*[https://www.hfme.org/ Hummingbirds' Foundation for ME] established by [[Jodi Bassett]]
*[https://meaustralia.net/ ME Australia] a collective network across Australia
*[[Change for ME Australia]], an online collective

==Research==

===Notable studies===
*[https://www.dovepress.com/articles.php?article_id=26236 Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome (2016)]
*2016, [https://link.springer.com/chapter/10.1007/978-3-319-32240-7_11 Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy]

===Research results===
*2018: [https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/ How much can people with ME stand?]<ref>{{Cite news|url=https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/|title=How much can people with ME stand?|date=2018-08-06|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2016: [http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/ Australian Breakthrough on Diagnostic Blood Test]<ref name="#MEACTION20160303test" />
*2015: [http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/ Australian Research into ME/CFS in Adolescents]<ref name="#MEACTION20150819arma" />

===Research funding===
*2018: [https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/ Friends in Australia's Parliament for people with ME and chronic fatigue syndrome]<ref>{{Cite news|url=https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/|title=Friends in Australia’s parliament for people with ME and chronic fatigue syndrome|date=2018-08-07|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2018: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's medical research council questioned on ME and CFS committee]<ref>{{Cite news|url=https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/|title=Australia’s medical research council questioned on ME and CFS committee|date=2018-06-15|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2017: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's Health Minister refuses to stop funding trial of 'incredibly bad' treatment]<ref>{{Cite news|url=https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/|title=Australia’s medical research council questioned on ME and CFS committee|date=2018-06-15|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2016: [http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/ Australian Health Dept Pins its Hopes on NIH Research]<ref name="#MEACTION20160212ahd" />
*2016: [http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/ The Australian Health Department Answers Questions on ME]<ref name="#MEACTION20160120ahd" />
*2015: [http://www.meaction.net/2015/11/16/aust-senator-questions-government-on-lack-of-action-on-me/ Australian Senator Questions Government on Lack of Action on ME]<ref name="#MEACTION20151116asqg" />

===Research groups===
*[[National Centre for Neuroimmunology and Emerging Diseases]] (NCNED)
*[https://meaustralia.net/2018/12/05/new-australian-research-network-holding-scientific-workshop-on-me/ ME/CFS Discovery Research Network]
*[https://app.secure.griffith.edu.au/news/2018/11/27/generous-2m-donation-to-bolster-efforts-of-griffith-cfs-researchers/ Consortium Health International for Myalgic Encephalomyelitis (CHIME)]
*[https://www.mcri.edu.au Murdoch Childrens Research Institute]
*[https://www.vu.edu.au/ Victoria University]
*[http://www.bio21.unimelb.edu.au/ Bio21 Institute, Melbourne University]

===Researchers===
*[[Christopher Armstrong]]
*[[Dorothy Bruck]]
*[[Henry Butt]]
*[[Elaine DeFreitas]]
*[[Paul R Gooley|Paul Gooley]]
*[[Melinda Jackson]]
*[[Donald Lewis]]
*[[Brett Lidbury]]
*[[Andrew Lloyd]]
*[[Neil McGregor]]
*[[Michael Maes]]
*[[Sarah Knight]]
*[[Sonya Marshall-Gradisnik]]
*[[Donald Staines]]
*[[Amy Wallis]]

==Clinicians==
*Biomedical clinicians: [[Donald P Lewis]] (VIC), [[Rashmi Cabena]] (VIC), [[Richard Schloeffel]] (NSW), [[Mark Donohoe]] (NSW)
*[[GET]]/[[CBT]] clinicians: [[Michael Oldmeadow]] (VIC), [[Andrew Lloyd]] (NSW)

==Notable patients==
*[https://meaustralia.net/2016/12/01/remembering-alison-hunter-1976-1996/ Alison Hunter], died 1996, aged 19, from complications related to ME/CFS. The [[Alison Hunter Memorial Foundation]] was established in her name in 1998, to raise much needed funding for research into ME/CFS, as well as raising awareness and advocating for the needs of people with ME/CFS. The Alison Hunter Foundation established a partnership with the [[National Centre for Neuroimmunology and Emerging Diseases]] (NCNED), at Griffith University (Queensland), in 2014, and has since ceased operating as an independent charity, instead focussing on supporting the research being undertaken at NCNED.<ref name="AHMFwebsite" />
*[[Jodi Bassett]]
*[[Laura Dundovic]]
*[[Leigh Hatcher]]
*[[Linley Frame]]
*[[Johanna Griggs]]
*[[Alastair Lynch]]
*[[James McDonald]]
*[[Alem Matthees]]
*[[Nadine Neumann ]]
*[[Matthew Nicholson]]
*[[Rhyce Shaw]]
*[[Shelley Taylor-Smith]]

==Learn more==
*2016, [https://www.thesaturdaypaper.com.au/2016/08/06/rethinking-chronic-fatigue-syndrome/14704056003560 Rethinking chronic fatigue syndrome]
*2018, [https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening To the #MillionsMissing, something remarkable is happening]
*[https://meaustralia.net/ ME Australia]

==See also==
*[[1949-53 Adelaide outbreak]]
*[[Outbreaks]]
*[[Scott Ludlam]]

==References==
<references>
<ref name="ICC2011criteria">{{citation
| last1 = Carruthers | first1 = B M | authorlink1 = Bruce Carruthers
| last2 = van de Sande | first2 = M I | authorlink2 = Marjorie van de Sande
| last3 = De Meirleir | first3 = Kenny L | authorlink3 = Kenny de Meirleir
| last4 = Klimas | first4 = Nancy G | authorlink4 = Nancy Klimas
| last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick
| last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell
| last7 = Staines | first7 = Donald | authorlink7 = Donald Staines
| last8 = Powles | first8 = A C P | authorlink8 = A C Peter Powles
| last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight
| last10 = Vallings | first10= Rosamund | authorlink10= Rosamund Vallings
| last11 = Bateman | first11= Lucinda | authorlink11= Lucinda Bateman
| last12 = Baumgarten-Austrheim | first12= B | authorlink12= Barbara Baumgarten-Austrheim
| last13 = Bell | first13= David S | authorlink13= David Bell
| last14 = Carlo-Stella | first14= N | authorlink14= Nicoletta Carlo-Stella
| last15 = Chia | first15= John | authorlink15= John Chia
| last16 = Darragh | first16= A | authorlink16= Austin Darragh
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= Donald P | authorlink18= Donald Lewis
| last19 = Light | first19= Alan R | authorlink19= Alan Light
| last20 = Marshall-Gradisnik | first20= Sonya | authorlink20= Sonya Marshall-Gradisnik
| last21 = Mena | first21= I | authorlink21= Ismael Mena
| last22 = Mikovits | first22= J A | authorlink22= Judy Mikovits
| last23 = Miwa | first23= K | authorlink23= Kunihisa Miwa
| last24 = Murovska | first24= M | authorlink24= Modra Murovska
| last25 = Pall | first25= M L | authorlink25= Martin Pall
| last26 = Stevens | first26= Staci R | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: International Consensus Criteria
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327–338
| date = 22 August 2011
| pmid = 21777306 | doi = 10.1111/j.1365-2796.2011.02428.x
| url = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
}}</ref>
<ref name="JasonL2006paed">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = Jordan | first2 = Karen | authorlink2 = Karen Jordan
| last3 = Miike | first3 = Teruhisa | authorlink3 = Teruhisa Miike
| last4 = Bell | first4 = David S | authorlink4 = David Bell
| last5 = Lapp | first5 = Charles | authorlink5 = Charles Lapp
| last6 = Torres-Harding | first6 = Susan | authorlink6 = Susan Torres-Harding
| last7 = Rowe | first7 = Kathy | authorlink7 = Katherine Rowe
| last8 = Gurwitt | first8 = Alan | authorlink8 = Alan Gurwitt
| last9 = De Meirleir | first9 = Kenny | authorlink9 = Kenny de Meirleir
| last10 = Van Hoof | first10= Elke LS | authorlink10= Elke Van Hoof
| title = A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
| journal = Journal of Chronic Fatigue Syndrome | volume = 13 | issue = 2-3 | page = 1-44
| date = 2006
| doi = 10.1300/J092v13n02_01
| url = http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01
}}</ref>
<ref name="#MEACTION20150819arma">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australian Research into ME/CFS in Adolescents
| journal = #MEAction
| date = 19 Aug 2015
| url = http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/
}}</ref>
<ref name="#MEACTION20151116asqg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australian Senator Questions Government on Lack of Action on ME
| journal = #MEAction
| date = 16 Nov 2015
| url = http://www.meaction.net/2015/11/16/aust-senator-questions-government-on-lack-of-action-on-me/
}}</ref>
<ref name="#MEACTION20160120ahd">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australian Health Dept Answers Questions on ME
| journal = #MEAction
| date = 20 Jan 2016
| url = http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/
}}</ref>
<ref name="#MEACTION20160212ahd">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australian Health Dept Pins its Hopes on NIH Research
| journal = #MEAction
| date = 12 Feb 2016
| url = http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/
}}</ref>
<ref name="#MEACTION20160303test">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australian Breakthrough on Diagnostic Blood Test
| journal = #MEAction
| date = 3 Mar 2016
| url = http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/
}}</ref>
<ref name="#MEACTION20160314amrc">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| last2 = Nimmo | first2 = Sasha | authorlink2 = Sasha Nimmo
| title = Australians: Ask the Medical Research Council to Fund Studies
| journal = #MEAction
| date = 14 Mar 2016
| url = http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/
}}</ref>
<ref name="SthAustGuidelines">{{citation
| last1 = South Australian Department of Human Services
| last2 = University of Adelaide
| last3 = ME/CFS Society of South Australia
| title = ME/CFS Guidelines: Management Guidelines for General Practitioners
| date = 2004
| ISBN = 0 7308 9334 0
| url = http://sacfs.asn.au/download/guidelines.pdf
}}</ref>
<ref name="AHMFwebsite">{{citation
| title = Alison Hunter Memorial Foundation (website)
| url = http://www.ahmf.org
}}</ref>
<ref name="RACP2002">{{citation
| author1 = Victoria Toulkidis
| author2 = Produced by a Working Group convened under the auspices of the Royal Australasian College of Physicians
| display-authors = 1
| title = Supplement: Chronic fatigue syndrome
| journal = Med J Aust 2002 | volume = 176 | issue = 9 | page = 17-55
| date = 2002
| url = https://www.mja.com.au/journal/2002/176/9/chronic-fatigue-syndrome
}}</ref>
<ref name="RACGP2015guide">{{citation
| author = Royal Australasian College of General Practitioners (RACGP)
| title = Graded exercise therapy: chronic fatigue syndrome
| date = Mar 2015
| url = http://www.racgp.org.au/your-practice/guidelines/handi/interventions/other/graded-exercise-therapy-for-chronic-fatigue-syndrome/
}}</ref>
<ref name="AFPlist">{{citation
| journal = Australian Family Physician
| title = articles about Chronic Fatigue Syndrome
| url = http://www.racgp.org.au/search/
}}</ref>
<ref name="AFP201304">{{citation
| author = Megan Arroll, Bruce Arroll
| title = Chronic fatigue syndrome: A patient centred approach to management
| journal = Australian Family Practitioner
| date = Apr 2013
| url = http://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome/
}}</ref>
<ref name="AMA20040503">{{citation
| author = Australian Medical Association
| title = Chronic fatigue sufferers beat blues with exercise
| date = 3 May 2004
| url = https://ama.com.au/media/chronic-fatigue-sufferers-beat-blues-exercise
}}</ref>
</references>

[[Category:Countries]]
[[Category:Oceania]]
[[Category:Australia]]

Neuroinflammation

2018-10-10T06:57:51Z

Suelala:minor edit to citation - names changed from ALL-CAPS to mixed case

[[File:Microglia and Astrocyte Dysfunction.png|thumb|Possible mechanism showing the decline of microglia and astrocyte function and structure.]]
'''Neuroinflammation''' takes place when the [[central nervous system]] (CNS), which consists of the [[brain]] and [[spinal cord]], undergoes an immune response. This may be due to [[Microglia|microglial]] cell activation.

Neuroinflammation is thought to occur when immune cells from the body infiltrate the CNS, which consists of the [[brain]] and [[spinal cord]]. Infiltration of these immune cells can occur both when the brain is damaged and when there is infection in the body.<ref name=":0">{{Cite journal|last=Graeber|first=Manuel B.|last2=Li|first2=Wei|last3=Rodriguez|first3=Michael L.|date=2011-12-01|title=Role of microglia in CNS inflammation|url=https://www.ncbi.nlm.nih.gov/pubmed/21889505|journal=FEBS letters|volume=585|issue=23|pages=3798–3805|doi=10.1016/j.febslet.2011.08.033|issn=1873-3468|pmid=21889505}}</ref>

[[Microglia]], the primary defense cells for the CNS, activate in response to the immune cells and respond to repair the damage in the brain or fight the infection.<ref name=":0" /><ref name=":1">{{Cite journal|last=DiSabato|first=Damon J.|last2=Quan|first2=Ning|last3=Godbout|first3=Jonathan P.|date=Oct 2016|title=Neuroinflammation: the devil is in the details|url=https://www.ncbi.nlm.nih.gov/pubmed/26990767|journal=Journal of Neurochemistry|volume=139 Suppl 2|pages=136–153|doi=10.1111/jnc.13607|issn=1471-4159|pmc=5025335|pmid=26990767}}</ref> Microglia work to restore damaged tissues by activating [[T cell|T-cells]] leading to further inflammation. Consistent microglia activation and release of T-cells can lead to the chronic damage that perpetuates neuroinflammation.<ref name=":1" />

==Diseases Associated with Neuroinflammation==
Neuroinflammation is a symptom of many diseases and thought to be a part of ME. [[Alzheimer's|Alzheimer’s]] disease, [[Parkinson’s]] disease, and [[multiple sclerosis]] are illnesses in which the brain experiences decline in structure and function, and also where it shows clear signs of neuroinflammation. [[Inflammation]] of the [[brain]] is linked to activated [[microglia]], [[cytokine]] presence in the brain,<ref>{{Cite journal|last=Chen|first=Wei-Wei|last2=Zhang|first2=Xia|last3=Huang|first3=Wen-Juan|date=Apr 2016|title=Role of neuroinflammation in neurodegenerative diseases (Review)|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4805095/|journal=Molecular Medicine Reports|volume=13|issue=4|pages=3391–3396|doi=10.3892/mmr.2016.4948|issn=1791-2997|pmc=4805095|pmid=26935478}}</ref> and changes in the neurochemicals produced by the brain.<ref name=":2">{{Cite journal|last=Albrecht|first=Daniel S.|last2=Granziera|first2=Cristina|last3=Hooker|first3=Jacob M.|last4=Loggia|first4=Marco L.|date=2016-04-20|title=In Vivo Imaging of Human Neuroinflammation|url=https://www.ncbi.nlm.nih.gov/pubmed/26985861|journal=ACS chemical neuroscience|volume=7|issue=4|pages=470–483|doi=10.1021/acschemneuro.6b00056|issn=1948-7193|pmc=5433433|pmid=26985861}}</ref> These effects also occur in [[Myalgic encephalomyelitis|ME]] which is why researchers are searching to more strongly show neuroinflammation in these patients.

==Causes==

=== Microglia Activation ===
The [[blood brain barrier]] (BBB), a membrane that separates the brain from the rest of the body, may become compromised in [[Myalgic encephalomyelitis|ME]] patients. If there are [[Cytokine|cytokines]] circulating in the bloodstream, they may get into the brain through opened sections of the BBB<ref name=":3">{{Cite journal|last=Morris|first=Gerwyn|last2=Maes|first2=Michael|date=Dec 2013|title=A neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/22718491|journal=Metabolic Brain Disease|volume=28|issue=4|pages=523–540|doi=10.1007/s11011-012-9324-8|issn=1573-7365|pmid=22718491}}</ref>. While this initially starts as a normal brain response so that the brain can get the body back to normal, healthy functioning, this process can be predisposed to dysfunction and activation may be sustained longer than usual.

[[Microglia]] are cells that can act as the brain’s primary immune response. If cytokines or immune cells from outside the [[Central nervous system|CNS]] enter the brain through the BBB, the microglia will respond to the immune threat and attempt to clear the infiltrators out. However, this process increases neuron activation and the release of more cytokines potentially leading to a cycle of neuroinflammation<ref name=":3" />.

One study used a radioligand, a tracer that lights up in the presence of a specific molecule, in a positron emission tomography (PET) scanner in search of activated microglia in ME patients’ brains. Activated microglia cells are believed to be correlated to neuroinflammation. Increased radioligand presence in ME subjects’ brains was observed; however, further analysis of these data and replication of their results are needed<ref>{{Cite journal|last=Nakatomi|first=Yasuhito|last2=Mizuno|first2=Kei|last3=Ishii|first3=Akira|last4=Wada|first4=Yasuhiro|last5=Tanaka|first5=Masaaki|last6=Tazawa|first6=Shusaku|last7=Onoe|first7=Kayo|last8=Fukuda|first8=Sanae|last9=Kawabe|first9=Joji|date=Jun 2014|title=Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study|url=https://www.ncbi.nlm.nih.gov/pubmed/24665088|journal=Journal of Nuclear Medicine: Official Publication, Society of Nuclear Medicine|volume=55|issue=6|pages=945–950|doi=10.2967/jnumed.113.131045|issn=1535-5667|pmid=24665088}}</ref>.

===Oxidative and Nitrosative Stress===
Neuroinflammation may also be related to excess oxygen and nitrogen molecules in tissues. This can cause oxidative or nitrosative stress (O&NS), leading to tissue damage. The O&NS pathway helps maintain the blood brain barrier, an important membrane keeping the brain protected from harmful substances present in the blood. When the pathway is dysfunctional, the blood-brain barrier becomes less effective at keeping out particles. Breakdown of this barrier could lead to immune cells entering the brain and trigger an immune response, leading to neuroinflammation. Researchers propose a link between the dysfunction of brain tissues in ME/ and the breakdown of the oxidative and nitrosative stress pathway.<ref name=":3" />

=== Activation of cyclical neuroinflammation: A self-perpetuating cycle ===
When a patient gets an infection, the body attempts to return homeostasis. The immune system has regulatory structures called toll-like receptors (TLRs). High amounts of stress or a previous injury can predispose an individual’s TLRs to be more sensitive, releasing inflammatory molecules more readily in response to an immune stressor.<ref>{{Cite journal|last=Gárate|first=Iciar|last2=Garcia-Bueno|first2=Borja|last3=Madrigal|first3=Jose Luis Muñoz|last4=Caso|first4=Javier Rubén|last5=Alou|first5=Luis|last6=Gomez-Lus|first6=Marisa L.|last7=Micó|first7=Juan Antonio|last8=Leza|first8=Juan Carlos|date=2013-01-01|title=Stress-induced neuroinflammation: role of the Toll-like receptor-4 pathway|url=https://www.ncbi.nlm.nih.gov/pubmed/22906518|journal=Biological Psychiatry|volume=73|issue=1|pages=32–43|doi=10.1016/j.biopsych.2012.07.005|issn=1873-2402|pmid=22906518}}</ref> One of the downstream pathways of TLRs, the oxidative and nitrosative stress pathway (O&NS) can get activated. If this pathway is overstimulated, the body will produce a larger-scale response in an effort to return to normal.<ref>{{Cite journal|last=Liu|first=JiaJun|last2=Buisman-Pijlman|first2=Femke|last3=Hutchinson|first3=Mark R.|date=2014|title=Toll-like receptor 4: innate immune regulator of neuroimmune and neuroendocrine interactions in stress and major depressive disorder|url=https://www.ncbi.nlm.nih.gov/pubmed/25324715|journal=Frontiers in Neuroscience|volume=8|pages=309|doi=10.3389/fnins.2014.00309|issn=1662-4548|pmc=4179746|pmid=25324715}}</ref> In this attempt, a chemical called damage-associated molecular patterns (DAMPs) triggers the release of more inflammatory molecules, some of which activate the TLRs<ref>{{Cite journal|last=Morris|first=Gerwyn|last2=Berk|first2=Michael|last3=Walder|first3=Ken|last4=Maes|first4=Michael|date=2015-02-06|title=Central pathways causing fatigue in neuro-inflammatory and autoimmune illnesses|url=https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0259-2|journal=BMC Medicine|language=En|volume=13|issue=1|doi=10.1186/s12916-014-0259-2|issn=1741-7015|pmc=4320458|pmid=25856766}}</ref> (Morris et al., 2015). The process of activation from TLRs to the O&NS pathway to the production of more inflammatory molecules then becomes a cycle.<ref name=":4">{{Cite journal|last=Chaudhuri|first=A.|last2=Condon|first2=B. R.|last3=Gow|first3=J. W.|last4=Brennan|first4=D.|last5=Hadley|first5=D. M.|date=2003-02-10|title=Proton magnetic resonance spectroscopy of basal ganglia in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/12598734|journal=Neuroreport|volume=14|issue=2|pages=225–228|doi=10.1097/01.wnr.0000054960.21656.64|issn=0959-4965|pmid=12598734}}</ref>

== Possible Neurological Biomarkers of ME ==
When the brain is going through challenges such as neuroinflammation or neurodegeneration, several chemicals become dysregulated. These changes are able to be recorded using a special function of magnetic resonance (MR) scanners. Because each chemical has a distinct molecular structure, the magnetic field formed by the scanner will bounce off of each chemical in unique ways. This allows the technician to measure the amounts of these chemicals in the brain.

Several neurochemicals have been studied in relation to ME patients. Myo-inositol is thought to be involved in astrocyte function (Albrecht et al. 2016) and trended to be higher in ME patients compared to controls.<ref name=":5">{{Cite journal|last=Brooks|first=J. C.|last2=Roberts|first2=N.|last3=Whitehouse|first3=G.|last4=Majeed|first4=T.|date=Nov 2000|title=Proton magnetic resonance spectroscopy and morphometry of the hippocampus in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11144799|journal=The British Journal of Radiology|volume=73|issue=875|pages=1206–1208|doi=10.1259/bjr.73.875.11144799|issn=0007-1285|pmid=11144799}}</ref>

N-acetylacetate (NAA) shows neuron density, which has been found in other neurological disorders<ref name=":2" /> and has been shown to be lower in ME patients,<ref name=":4" /><ref name=":5" /> but this was not found in all studies.<ref>{{Cite journal|last=Puri|first=B. K.|last2=Counsell|first2=S. J.|last3=Zaman|first3=R.|last4=Main|first4=J.|last5=Collins|first5=A. G.|last6=Hajnal|first6=J. V.|last7=Davey|first7=N. J.|date=Nov 2002|title=Relative increase in choline in the occipital cortex in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/12197861|journal=Acta Psychiatrica Scandinavica|volume=106|issue=3|pages=224–226|issn=0001-690X|pmid=12197861}}</ref><ref name=":6">{{Cite journal|last=Tomoda|first=A.|last2=Miike|first2=T.|last3=Yamada|first3=E.|last4=Honda|first4=H.|last5=Moroi|first5=T.|last6=Ogawa|first6=M.|last7=Ohtani|first7=Y.|last8=Morishita|first8=S.|date=Jan 2000|title=Chronic fatigue syndrome in childhood|url=https://www.ncbi.nlm.nih.gov/pubmed/10761837|journal=Brain & Development|volume=22|issue=1|pages=60–64|issn=0387-7604|pmid=10761837}}</ref>

[[Choline]] is linked to activation of glia, loss of energy and expression of macrophages in the brain<ref name=":2" /> and has been shown to change compared to controls.<ref name=":4" /><ref name=":5" /><ref name=":6" /> <ref>{{Cite journal|last=Puri|first=B. K.|last2=Agour|first2=M.|last3=Gunatilake|first3=K. D. R.|last4=Fernando|first4=K. a. C.|last5=Gurusinghe|first5=A. I.|last6=Treasaden|first6=I. H.|date=Nov 2009|title=An in vivo proton neurospectroscopy study of cerebral oxidative stress in myalgic encephalomyelitis (chronic fatigue syndrome)|url=https://www.ncbi.nlm.nih.gov/pubmed/19906518|journal=Prostaglandins, Leukotrienes, and Essential Fatty Acids|volume=81|issue=5-6|pages=303–305|doi=10.1016/j.plefa.2009.10.002|issn=1532-2823|pmid=19906518}}</ref>

Lactate increases when more energy is being expended and has been shown to be higher than controls,<ref name=":7">{{Cite journal|last=Mathew|first=Sanjay J.|last2=Mao|first2=Xiangling|last3=Keegan|first3=Kathryn A.|last4=Levine|first4=Susan M.|last5=Smith|first5=Eric L. P.|last6=Heier|first6=Linda A.|last7=Otcheretko|first7=Viktor|last8=Coplan|first8=Jeremy D.|last9=Shungu|first9=Dikoma C.|date=Apr 2009|title=Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study|url=https://www.ncbi.nlm.nih.gov/pubmed/18942064|journal=NMR in biomedicine|volume=22|issue=3|pages=251–258|doi=10.1002/nbm.1315|issn=0952-3480|pmid=18942064}}</ref><ref>{{Cite journal|last=Shungu|first=Dikoma C.|last2=Weiduschat|first2=Nora|last3=Murrough|first3=James W.|last4=Mao|first4=Xiangling|last5=Pillemer|first5=Sarah|last6=Dyke|first6=Jonathan P.|last7=Medow|first7=Marvin S.|last8=Natelson|first8=Benjamin H.|last9=Stewart|first9=Julian M.|date=Sep 2012|title=Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology|url=https://www.ncbi.nlm.nih.gov/pubmed/22281935|journal=NMR in biomedicine|volume=25|issue=9|pages=1073–1087|doi=10.1002/nbm.2772|issn=1099-1492|pmc=3896084|pmid=22281935}}</ref><ref name=":8">{{Cite journal|last=Natelson|first=Benjamin H.|last2=Vu|first2=Diana|last3=Coplan|first3=Jeremy D.|last4=Mao|first4=Xiangling|last5=Blate|first5=Michelle|last6=Kang|first6=Guoxin|last7=Soto|first7=Eli|last8=Kapusuz|first8=Tolga|last9=Shungu|first9=Dikoma C.|date=2017|title=Elevations of Ventricular Lactate Levels Occur in Both Chronic Fatigue Syndrome and Fibromyalgia|url=https://www.ncbi.nlm.nih.gov/pubmed/29308330|journal=Fatigue: Biomedicine, Health & Behavior|volume=5|issue=1|pages=15–20|doi=10.1080/21641846.2017.1280114|issn=2164-1846|pmc=5754037|pmid=29308330}}</ref><ref name=":9">{{Cite journal|last=Murrough|first=James W.|last2=Mao|first2=Xiangling|last3=Collins|first3=Katherine A.|last4=Kelly|first4=Chris|last5=Andrade|first5=Gizely|last6=Nestadt|first6=Paul|last7=Levine|first7=Susan M.|last8=Mathew|first8=Sanjay J.|last9=Shungu|first9=Dikoma C.|date=Jul 2010|title=Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder|url=https://www.ncbi.nlm.nih.gov/pubmed/20661876|journal=NMR in biomedicine|volume=23|issue=6|pages=643–650|doi=10.1002/nbm.1512|issn=1099-1492|pmid=20661876}}</ref> and significantly differs from lactate levels in people with psychological disorders.<ref name=":7" /><ref name=":9" /> Both ME patients and [[fibromyalgia]] patients were found to have similar levels of elevated lactate, so more tests would be needed to differentiate the two.<ref name=":8" />

Though contrasts were found between ME people and controls in many of these [[Diagnostic biomarker|biomarker]] studies, researchers are not sure what the changes mean specifically because the metabolites are used in multiple brain processes. Furthermore, the results shown by these papers has not been largely replicated. However, if repeated, these biomarkers could potentially become an objective measure for diagnosing ME.

==Notable studies==
*2010, Autopsies of four deceased ME patients showed various pathological phenomena in the CNS and [[peripheral nervous system]]s.<ref>{{Cite web|url=https://www.meassociation.org.uk/2011/01/pathology-of-mecfs-pilot-study-of-four-autopsy-reports/|title=Pathology of ME/CFS: pilot study of four autopsy reports|last=|first=|date=Jan 2011|website=www.meassociation.org.uk|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2018-08-10}}</ref>
*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder]]. NY Times Well article by [[David Tuller]] on the [[brain scans]] of [[ME/CFS]] patient's researched by [[Stanford ME/CFS Initiative]].<ref>{{Cite news|url=http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/?_r=0|title=Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder|last=Tuller|first=David|date=Nov 24, 2014|work=Well|access-date=2018-08-10|archive-url=|archive-date=|dead-url=|language=en}}</ref><ref>{{Cite journal|last=Zeineh|first=Michael M.|last2=Kang|first2=James|last3=Atlas|first3=Scott W.|last4=Raman|first4=Mira M.|last5=Reiss|first5=Allan L.|last6=Norris|first6=Jane L.|last7=Valencia|first7=Ian|last8=Montoya|first8=Jose G.|date=2015|title=Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome|url=https://pubs.rsna.org/doi/abs/10.1148/radiol.14141079|journal=Radiology|language=en|volume=274|issue=2|pages=517–526|doi=10.1148/radiol.14141079|issn=0033-8419|via=}}</ref><ref>{{Cite web|url=http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html|title=Study finds brain abnormalities in chronic fatigue patients|last=|first=|date=Oct 28, 2014|website=News Center|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-09-22}}</ref>
[[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top Scans: Control Patient, Bottom Scans: ME/CFS Patient]]
* 2014, A Japanese [https://en.wikipedia.org/wiki/Positron_emission_tomography PET] study looked at neuroinflammation in 9 patients with ME/CFS and 10 controls. They measured a protein expressed by activated [[microglia]], and found that values in the [[cingulate cortex]], [[hippocampus]], [[amygdala]], [[thalamus]], [[midbrain]], and [[pons]] were 45%–199% higher in ME/CFS patients than in healthy controls. The values in the amygdala, thalamus, and midbrain positively correlated with cognitive impairment score, the values in the cingulate cortex and thalamus positively correlated with pain score, and the value in the hippocampus positively correlated with depression score.<ref name="Nakatomi2014">{{citation
| last1 = Nakatomi | first1 = Yasuhito | authorlink1 =
| last2 = Mizuno | first2 = Kei | authorlink2 =
| last3 = Ishii | first3 = Akira | authorlink3 =
| last4 = Wada | first4 = Yasuhiro | authorlink4 =
| last5 = Tanaka | first5 = Masaaki | authorlink5 =
| last6 = Tazawa | first6 = Shusaku | authorlink6 =
| last7 = Onoe | first7 = Kayo | authorlink7 =
| last8 = Fukuda | first8 = Sanae | authorlink8 =
| last9 = Kawabe | first9 = Joji | authorlink9 =
| last10 = Takahashi | first10= Kazuhiro | authorlink10=
| last11 = Kataoka | first11= Yosky | authorlink11=
| last12 = Shiomi | first12= Susumu | authorlink12=
| last13 = Yamaguti | first13= Kouzi | authorlink13=
| last14 = Inaba | first14= Masaaki | authorlink14=
| last15 = Kuratsune | first15= Hirohiko | authorlink15=
| last16 = Watanabe | first16= Yasuyoshi | authorlink16= Yasuyoshi Watanabe
| display-authors = 3
| title = Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study
| journal = Journal of Nuclear Medicine | volume = 2014 Jun;55(6) | page = 945-50
| date = 2014-03-24
| pmid = 24665088 | doi = 10.2967/jnumed.113.131045
| url = http://jnm.snmjournals.org/content/55/6/945.long
}}</ref><ref name="Tuller20141124NYT">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder
| journal = NY Times
| date = 2014-11-24
| url = http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/?_r=0
}}</ref>

==Talks & interviews==
*2016, [https://www.youtube.com/watch?v=_ijlkRwORfM What is neuroinflammation?]<ref>{{Cite web|url=https://www.youtube.com/watch?v=_ijlkRwORfM|title=What is neuroinflammation?|last=Younger|first=Jarred|date=Apr 4, 2016|website=YouTube|via=Younger Lab|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
*2016, [https://www.youtube.com/watch?v=1p6UojKL010 Do you have a hot brain?]<ref>{{Cite web|url=https://www.youtube.com/watch?v=1p6UojKL010|title=Do you have a hot brain?|last=Younger|first=Jarred|date=Apr 25, 2016|website=YouTube|via=Younger Lab|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
*2017, [https://www.betterhealthguy.com/episode49 Brain on Fire with Dr. Mary Ackerley, MD]
*2017, [https://www.moldillnessmadesimple.com/brain-on-fire-brain-changes-in-mold-illness-with-dr-ackerley/ Brain on Fire Webinar - Brain Changes in Mold Illness with Dr. Mary Ackerley]

== See also ==
*[[Brain imaging]]
*[[Jarred Younger]]
==Learn more==
*[https://en.wikipedia.org/wiki/Neuroinflammation Wikipedia]
*[http://mypassion4health.com/ Mary Ackerley, MD]
*2014, [http://paradigmchange.me/wp/fire/ Brain on Fire - The Role of Toxic Mold in Triggering Psychiatric Symptoms]
*2016, [https://doi.org/10.1038/nature16549 Schizophrenia risk from complex variation of complement component 4]<ref>{{Cite journal|last=Sekar|first=Aswin|last2=Bialas|first2=Allison R.|last3=de Rivera|first3=Heather|last4=Davis|first4=Avery|last5=Hammond|first5=Timothy R.|last6=Kamitaki|first6=Nolan|last7=Tooley|first7=Katherine|last8=Presumey|first8=Jessy|last9=Baum|first9=Matthew|date=2016-02-11|title=Schizophrenia risk from complex variation of complement component 4|url=https://www.ncbi.nlm.nih.gov/pubmed/26814963|journal=Nature|volume=530|issue=7589|pages=177–183|doi=10.1038/nature16549|issn=1476-4687|pmc=4752392|pmid=26814963}}</ref>
* 2016, [https://doi.org/10.18632/aging.100981 Reversal of cognitive decline in Alzheimer’s disease]<ref>{{Cite journal|last=Bredesen|first=Dale E.|last2=Amos|first2=Edwin C.|last3=Canick|first3=Jonathan|last4=Ackerley|first4=Mary|last5=Raji|first5=Cyrus|last6=Fiala|first6=Milan|last7=Ahdidan|first7=Jamila|date=Jun 2016|title=Reversal of cognitive decline in Alzheimer's disease|url=https://www.ncbi.nlm.nih.gov/pubmed/27294343|journal=Aging|volume=8|issue=6|pages=1250–1258|doi=10.18632/aging.100981|issn=1945-4589|pmc=4931830|pmid=27294343}}</ref>
* 2017, [https://doi.org/10.1016/j.biopsych.2017.08.005 Elevated Translocator Protein in Anterior Cingulate in Major Depression and a Role for Inflammation in Suicidal Thinking: A Positron Emission Tomography Study]<ref>{{Cite journal|last=Holmes|first=Sophie E.|last2=Hinz|first2=Rainer|last3=Conen|first3=Silke|last4=Gregory|first4=Catherine J.|last5=Matthews|first5=Julian C.|last6=Anton-Rodriguez|first6=Jose M.|last7=Gerhard|first7=Alexander|last8=Talbot|first8=Peter S.|date=2018-01-01|title=Elevated Translocator Protein in Anterior Cingulate in Major Depression and a Role for Inflammation in Suicidal Thinking: A Positron Emission Tomography Study|url=https://www.ncbi.nlm.nih.gov/pubmed/28939116|journal=Biological Psychiatry|volume=83|issue=1|pages=61–69|doi=10.1016/j.biopsych.2017.08.005|issn=1873-2402|pmid=28939116}}</ref>
* 2018, [https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/ Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS)]<ref>{{Cite news|url=https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/|title=Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS) - Health Rising|last=Johnson|first=Cort|date=2018-09-24|work=Health Rising|access-date=2018-09-26|archive-url=|archive-date=|dead-url=|language=en-US}}</ref>
<blockquote>[[Jarred Younger|Younger’s]] new approach looked at the entire [[brain]] and found signs of [[inflammation]] almost everywhere. When asked what could cause that, Younger said that any neurodegenerative/ neuroinflammatory disorder like [[Multiple sclerosis|MS]] or a severe brain injury that tweaks the [[microglia]] (immune cells in the brain) enough to produce a sustained period of inflammation, burns up the oxygen in the system. Once that happens, the cells resort to [[anaerobic metabolism]] and lactate builds up just as it does in the [[Muscle|muscles]] during [[exercise]].</blockquote>

==References==
<references />

[[Category:Body systems]]

Acetylcholine

2018-09-25T19:15:34Z

Suelala:adjust citation for myasthenia gravis autoantibodies

'''Acetylcholine''' is a [[neurotransmitter]] used in the [[autonomic nervous system]], both as an internal transmitter for the [[sympathetic nervous system]] and as the final product released by the [[parasympathetic nervous system]]. It also plays an important role in regulating the [[inflammation|inflammatory]] response.

==Function==

Acetylcholine is required for the generation of muscular force. In the central nervous system, acetylcholine modulates arousal and [[temperature]] regulation. It also may play a role in [[central fatigue]]. During [[exercise]], levels of acetylcholine drop.<ref>Conlay, L. A., Sabournjian, L. A., and Wurtman, R. J. Exercise and neuromodulators: choline and acetylcholine in marathon runners.Int. J. Sports Med. 13(Suppl. 1):S141-142, 1992</ref>

==Immune system==

The [[vagus nerve]] speaks directly to the [[immune system]] via acetylcholine.<ref>{{Cite news|url=https://www.sciencedaily.com/releases/2007/10/071024083630.htm|title=Direct Route From The Brain To The Immune System Discovered|work=ScienceDaily|access-date=2018-08-10|language=en}}</ref><ref>{{Cite news|url=http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_24-2-2015-14-16-10|title=Scientists uncover new role for neurotransmitter that helps fight infection {{!}} Imperial News {{!}} Imperial College London|work=Imperial News|access-date=2018-08-10|language=en-GB}}</ref><ref>{{Cite journal|last=Darby|first=Matthew|last2=Schnoeller|first2=Corinna|last3=Vira|first3=Alykhan|last4=Culley|first4=Fiona|last5=Bobat|first5=Saeeda|last6=Logan|first6=Erin|last7=Kirstein|first7=Frank|last8=Wess|first8=Jürgen|last9=Cunningham|first9=Adam F.|date=2015-01-28|title=The M3 Muscarinic Receptor Is Required for Optimal Adaptive Immunity to Helminth and Bacterial Infection|url=http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004636|journal=PLOS Pathogens|language=en|volume=11|issue=1|pages=e1004636|doi=10.1371/journal.ppat.1004636|issn=1553-7374|pmid=25629518}}</ref>

Acetylcholine plays a role in [[innate immune system|innate immunity]] through nicotinic [[acetylcholine receptors]] and in the [[adaptive immune system|adaptive immune response]] via M3 muscarinic acetylcholine receptors (M3R).<ref>{{Cite journal|last=Darby|first=Matthew|last2=Schnoeller|first2=Corinna|last3=Vira|first3=Alykhan|last4=Culley|first4=Fiona|last5=Bobat|first5=Saeeda|last6=Logan|first6=Erin|last7=Kirstein|first7=Frank|last8=Wess|first8=Jürgen|last9=Cunningham|first9=Adam F.|date=2015-01-28|title=The M3 Muscarinic Receptor Is Required for Optimal Adaptive Immunity to Helminth and Bacterial Infection|url=http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004636|journal=PLOS Pathogens|language=en|volume=11|issue=1|pages=e1004636|doi=10.1371/journal.ppat.1004636|issn=1553-7374|pmid=25629518}}</ref>

===Muscarinic receptors===

[[Knockout mice]], that is mice lacking the gene that encodes for M3R, had impaired response to bacterial infection, while normal mice given a muscarinic [[agonist]] (to increase the activity of M3R) had enhanced production of [[IL-13]] and [[IFN-γ]].<ref>{{Cite journal|last=Darby|first=Matthew|last2=Schnoeller|first2=Corinna|last3=Vira|first3=Alykhan|last4=Culley|first4=Fiona|last5=Bobat|first5=Saeeda|last6=Logan|first6=Erin|last7=Kirstein|first7=Frank|last8=Wess|first8=Jürgen|last9=Cunningham|first9=Adam F.|date=2015-01-28|title=The M3 Muscarinic Receptor Is Required for Optimal Adaptive Immunity to Helminth and Bacterial Infection|url=http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004636|journal=PLOS Pathogens|language=en|volume=11|issue=1|pages=e1004636|doi=10.1371/journal.ppat.1004636|issn=1553-7374|pmid=25629518}}</ref> Another study used a muscarinic agonist and an [[antagonist]] (reduce activity) and found that the antagonist suppressed the immune response while the agonist exaggerated it.<ref>{{Cite journal|last=Razani-Boroujerdi|first=Seddigheh|last2=Behl|first2=Muskaan|last3=Hahn|first3=Fletcher F.|last4=Pena-Philippides|first4=Juan Carlos|last5=Hutt|first5=Julie|last6=Sopori|first6=Mohan L.|date=Feb 2008|title=Role of muscarinic receptors in the regulation of immune and inflammatory responses|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2323336/|journal=Journal of neuroimmunology|volume=194|issue=1-2|pages=83–88|doi=10.1016/j.jneuroim.2007.11.019|issn=0165-5728|pmid=18190972}}</ref>

===Mast cells===

Several studies suggest a relationship between [[autonomic nervous system]] dysfunction and [[mast cell]] activation via acetylcholine.

One study found that acetylcholine via muscarinic receptors strongly inhibited the release of [[histamine]] in [[mucosal]] mast cells.<ref>{{Cite journal|title=Acetylcholine via Muscarinic Receptors Inhibits Histamine Release from Human Isolated Bronchi|url=http://www.atsjournals.org/doi/full/10.1164/ajrccm.156.2.96-12079#.V7vo-ZMrLMV|language=en|doi=10.1164/ajrccm.156.2.96-12079#.v7vo-zmrlmv}}</ref> The activity of [[acetylcholinesterase]], the enzyme that breaks down acetylcholine, was found to be significantly increased in 64% of patients experiencing flares of [[ulcerative colitis]].<ref>https://www.myknowtions.com/portfolio/autonomic-nervous-alterations-and-mast-cell-degranulation-in-the-exacerbation-of-ulcerative-colitis</ref>

==In human disease==

===Myasthenia Gravis===

Autoantibodies to acetylcholine receptors alpha subunit have been found in patients with [[myasthenia gravis]]. These cross react with [[herpesvirus]] glycoprotein D.<ref>{{cite book|last1=Angelini|first1=Lucia|last2=Bardare|first2=Maria|last3=Martini|first3=Alberto|year=2002|title=Immune-mediated Disorders of the Central Nervous System in Children|url=https://books.google.com/books?id=5trQOK8hcZUC&pg=PA7&lpg=PA7&dq=coxsackie+b+acetylcholine&source=bl&ots=zhup8ZXq68&sig=CxDwQCHO8-OMBYkcp4EayjnDKnw&hl=en&sa=X&ved=0ahUKEwjflpmqg9fOAhWBeSYKHSR4Dh0Q6AEIMTAD#v=onepage&q=coxsackie%20b%20acetylcholine&f=false}}</ref> Antibodies to acetylcholine receptor and [[HSV-1]] antigens crossreact.<ref>{{Cite journal|last=Gebhardt|first=B. M.|date=2000-06-26|title=Evidence for antigenic cross-reactivity between herpesvirus and the acetylcholine receptor|url=http://www.ncbi.nlm.nih.gov/pubmed/10742556|journal=Journal of Neuroimmunology|volume=105|issue=2|pages=145–153|issn=0165-5728|pmid=10742556}}</ref>

[[B cell]]s from myasthenia gravis patient stimulated ''in vitro'' by [[Epstein-Barr virus]] produced acetylcholine autoantibodies.<ref>{{Cite journal|last=Brenner|first=T.|last2=Timore|first2=Y.|last3=Wirguin|first3=I.|last4=Abramsky|first4=O.|last5=Steinitz|first5=M.|date=Oct 1989|title=In vitro synthesis of antibodies to acetylcholine receptor by Epstein-Barr virus-stimulated B-lymphocytes derived from patients with myasthenia gravis|url=http://www.ncbi.nlm.nih.gov/pubmed/2553772|journal=Journal of Neuroimmunology|volume=24|issue=3|pages=217–222|issn=0165-5728|pmid=2553772}}</ref> Ongoing EBV infection of the [[thymus]] has been posited as a causative agent for the production of aceytlcholine receptor autoantibodies in myasthenia gravis.<ref>{{Cite journal|last=J.|first=Kaminski, Henry|last2=Janos|first2=Minarovits,|title=Epstein-barr virus: Trigger for autoimmunity?|url=http://www.academia.edu/20258853/Epstein-barr_virus_Trigger_for_autoimmunity/|journal=Annals of Neurology|language=en|issn=0364-5134}}</ref><ref>{{Cite web|url=http://journals.lww.com/neurologynow/_layouts/15/oaks.journals.mobile/post.aspx?blogId=2&postId=10|title=Official Brain & Life Home Page|website=journals.lww.com|language=en|access-date=2018-08-10}}</ref>

===Sjögren Syndrome===

Autoantibodies against muscarinic acetylcholine receptor on exocrine glands were found in patients with [[Sjögren Syndrome]].<ref>http://www.omicsonline.org/open-access/autoantibodies-against-muscarinic-acetylcholine-receptor-on-exocrine-glands-in-sjgren-syndrome-2161-1122.1000265.pdf</ref>

===Chronic fatigue syndrome===

In 2015, a large German study found 29% of [[ME/CFS]] patients had elevated autoantibodies to M3 and M4 [[muscarinic acetylcholine receptor]]s, as well as ß2 [[adrenergic receptor]]s.<ref>{{Cite web|url=http://www.meaction.net/2015/09/26/antibodies-found-in-subset-of-cfs-patients/|title=Autoantibodies found in subset of CFS patients {{!}} #MEAction|website=www.meaction.net|language=en-US|access-date=2018-08-10}}</ref> A 2016 Australian study found that ME/CFS patients had significantly greater numbers of [[single nucleotide polymorphism]]s associated with the gene encoding for M3 muscarinic acetylcholine receptors.<ref>{{Cite journal|last=Marshall-Gradisnik|first=Sonya|last2=Smith|first2=Peter|last3=Nilius|first3=Bernd|last4=Staines|first4=Donald R.|date=2015-01-01|title=Examination of Single Nucleotide Polymorphisms in Acetylcholine Receptors in Chronic Fatigue Syndrome Patients|url=https://doi.org/10.4137/III.S25105|journal=Immunology and Immunogenetics Insights|language=en|volume=7|pages=III.S25105|doi=10.4137/III.S25105|issn=1178-6345}}</ref>

Anecdotally, some ME/CFS patients have tried [[Mestinon]], an [[aceytlcholinesterase inhibitor]] that increases circulating acetylcholine and is used to treat [[myasthenia gravis]], with some success.<ref>{{Cite news|url=http://www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/|title=A Mestinon Miracle: Vagus Nerve Stimulating Drug Helps Long Time ME/CFS Patient Exercise - Health Rising|date=2016-06-17|work=Health Rising|access-date=2018-08-10|language=en-US}}</ref> A work in progress study of [[exercise intolerance]] in [[preload failure]] found that Mestinon improved exercise tolerance, but the study has not yet been published.<ref>{{Cite journal|last=Oliveira|first=R.K.|date=2016|title=Pyridostigmine for Exercise Intolerance Treatment in Preload Failure|url=https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2016.193.1_MeetingAbstracts.A5664|journal=American Journal of Respiratory and Critical Care Medicine|volume=|pages=|via=}}</ref>

===Postural orthostatic tachycardia===
A small study of [[postural orthostatic tachycardia syndrome]] in children found that 24.39% of patients had acetylcholine receptor autoantibodies.<ref>{{Cite journal|last=Li|first=Jiawei|last2=Zhang|first2=Qingyou|last3=Liao|first3=Ying|last4=Zhang|first4=Chunyu|last5=Hao|first5=Hongjun|last6=Du|first6=Junbao|date=2014-08-03|title=The Value of Acetylcholine Receptor Antibody in Children with Postural Tachycardia Syndrome|url=https://link.springer.com/article/10.1007/s00246-014-0981-8|journal=Pediatric Cardiology|language=en|volume=36|issue=1|pages=165–170|doi=10.1007/s00246-014-0981-8|issn=0172-0643}}</ref> A small study of adult patients found elevated α1, β1 and β2 adrenergic receptor autoantibodies.<ref>{{Cite journal|last=Li|first=Hongliang|last2=Yu|first2=Xichun|last3=Liles|first3=Campbell|last4=Khan|first4=Muneer|last5=Vanderlinde‐Wood|first5=Megan|last6=Galloway|first6=Allison|last7=Zillner|first7=Caitlin|last8=Benbrook|first8=Alexandria|last9=Reim|first9=Sean|date=2014-01-27|title=Autoimmune Basis for Postural Tachycardia Syndrome|url=https://www.ahajournals.org/doi/abs/10.1161/JAHA.113.000755|journal=Journal of the American Heart Association|language=EN|volume=3|issue=1|doi=10.1161/jaha.113.000755|issn=2047-9980|pmc=PMC3959717|pmid=24572257}}</ref> A small randomized crossover design trial found that patients with postural orthostatic tachychardia improved with Mestinon.<ref>{{Cite journal|last=Raj|first=S. R.|date=2005-05-31|title=Acetylcholinesterase Inhibition Improves Tachycardia in Postural Tachycardia Syndrome|url=https://www.ahajournals.org/doi/pdf/10.1161/circulationaha.104.497594|journal=Circulation|volume=111|issue=21|pages=2734–2740|doi=10.1161/circulationaha.104.497594|issn=0009-7322}}</ref>

==Learn more==

*24 February 2015, [http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_24-2-2015-14-16-10 Scientists uncover new role for neurotransmitter that helps fight infection], Imperial College London News
*2011, [https://www.youtube.com/watch?v=n8j3BWeMOuo Video - "Is acetylcholine toxicity the cause of CFS?"]
*2003, [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1430829/ The Cholinergic Anti-inflammatory Pathway: A Missing Link in Neuroimmunomodulation], Molecular Medicine, 2003 May-Aug; 9(5-8): 125–134.

== See also ==
*[[Vagus nerve]]
*[[Vagus nerve infection hypothesis]]
*[[Autoantibody]]

==References==
<references />
[[Category:Neurotransmitters and hormones]]

Mark Guthridge

2018-07-08T18:10:23Z

Suelala:added online article from 03 Jul 2018

{{stub}}
Dr '''Mark Guthridge''' is a senior research fellow for the Australian Centre for Blood Diseases at Monash University<ref name="GuthridgeM20180528b"/>, with an interest in ME/cfs, immunology, metabolism, hematology, cancer research, cytokines.

==Articles, talks & interviews==

* 03 Jul 2018 - Written Article - NineMSN - [https://coach.nine.com.au/2018/07/03/18/52/chronic-fatigue-syndrome-myalgic-encephalomyelitis 'Chronic fatigue': The devastating illness that's so much worse than just tiredness]<ref name="GuthridgeM20180703"/>

* 01 Jun 2018 - Radio Interview - ABC Radio National (Australia) - Evenings with Christine Anu - [http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314 What do we know about Chronic Fatigue Syndrome]<ref name="GuthridgeM20180601"/> with Dr [[Donald Lewis]] & Dr [[Mark Guthridge]] (from timestamp 1:34:40 to 1:54:45)

* 28 May 2018 - Radio Interview - ABC Sydney - [http://www.abc.net.au/radio/sydney/programs/breakfast/cfs-edit/9807668 How much do you know about Chronic Fatigue Syndrome?] <ref name="GuthridgeM20180528b"/>

* 28 May 2018 - Radio Interview - 2SER Sydney - [https://2ser.com/chronic-fatigue-syndrome-a-misunderstood-illness/ Chronic Fatigue Syndrome: A Misunderstood Illness] <ref name="GuthridgeM20180528a"/>

* 24 May 2018 - Written Article - The Conversation - [https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 What causes chronic fatigue? What we know, don’t know and suspect] <ref name="GuthridgeM20180524"/>
** [https://player.fm/series/most-viral-science-news/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect via podcast]
** [https://www.sciencealert.com/here-s-what-science-knows-so-far-on-the-causes-of-chronic-fatigue-syndrome via Science Alert]
** [http://www.businesses.com.au/general-business/428075-what-causes-chronic-fatigue-what-we-know-don%E2%80%99t-know-and-suspect via Business Daily]

==Online presence==
* [https://twitter.com/dr_m_guthridge Twitter]

==Learn more==
*

==See also==
*

==References==
<references>

<ref name="GuthridgeM20180703">{{citation
| last1 = Gillan | first1 = Kimberly | authorlink1 = Kimberly Gillan
| last2 = Meagher | first2 = Jenny | authorlink2 = Jenny Meagher
| last3 = Guthridge | first3 = Mark | authorlink3 = Mark Guthridge
| title = 'Chronic fatigue': The devastating illness that's so much worse than just tiredness
| journal = Nine MSN (Australia) - Coach
| date = 3 Jul 2018
| url = https://coach.nine.com.au/2018/07/03/18/52/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="GuthridgeM20180601">{{citation
| last1 = Lewis | first1 = Donald P | authorlink1 = Donald Lewis
| last2 = Guthridge | first2 = Mark | authorlink2 = Mark Guthridge
| title = What Do We Know About Chronic Fatigue Syndrome ?
| journal = ABC Radio National (Australia) - Evenings with Christine Anu
| date = 1 Jun 2018
| url = http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314
}}</ref>

<ref name="GuthridgeM20180528b">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = How much do you know about Chronic Fatigue Syndrome?
| journal = ABC Radio Sydney (Australia) - Breakfast Show
| date = 28 May 2018
| url = http://www.abc.net.au/radio/sydney/programs/breakfast/cfs-edit/9807668
}}</ref>

<ref name="GuthridgeM20180528a">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = Chronic Fatigue Syndrome: A Misunderstood Illness
| journal = 2SER Radio Sydney (Australia) - Health, science & tech
| date = 28 May 2018
| url = https://2ser.com/chronic-fatigue-syndrome-a-misunderstood-illness/
}}</ref>

<ref name="GuthridgeM20180524">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = What causes chronic fatigue? What we know, don’t know and suspect
| journal = The Conversation (Australia)
| date = 24 May 2018
| url = https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395
}}</ref>

</references>

[[Category:Advocates or allies]][[Category:Australian advocates or allies]]

5-Hydroxytryptophan

2018-06-18T11:41:59Z

Suelala:minor reformat of citations

'''5-Hydroxytryptophan''' (5-HTP) is a precursor to the neurotransmitter serotonin.<ref name=":1" />

==Theory==
The reaction that causes 5-HTP to become serotonin requires the action of the enzyme aromatic-L-amino-acid decarboxylase (AADC). [[Vitamin B6|Vitamin B6]] is also required as a cofactor.<ref name=":1" /> The same enzyme catalyzes a number of other reactions,<ref name=":1">{{cite web|title=AADC|url=http://www.hmdb.ca/proteins/HMDBP00278|website=Human Metabolome database|accessdate=1 May 2018}}</ref> including:

* L-DOPA to [[dopamine]]
* L-[[phenylalanine]] to phenethylamine
* L-[[tyrosine]] to tyramine
* L-histidine to [[histamine]]
* L-[[tryptophan]] to tryptamine

5-HTP has been shown to increase serotonin levels in the central nervous system.<ref>{{Cite journal|last=Turner|first=Erick H|last2=Loftis|first2=Jennifer M|last3=Blackwell|first3=Aaron D|date=2006|title=Serotonin a la carte: Supplementation with the serotonin precursor5-hydroxytryptophan|url=https://escholarship.org/uc/item/58h866d5|journal=Pharmacology & Therapeutics|volume=109|issue=3|via=}}</ref>

==Evidence==
Reports about serotonin levels in ME/CFS patients are mixed. One study hypothesized, based off of their findings on tryptophan, that ME/CFS patients fell into two groups: a group with high brain serotonin, and a group with normal serotonin.<ref name=":0">{{Cite journal|last=Badawy AAB|first=AAB|last2=Morgan|first2=CJ|last3=Llewelyn|first3=MB|last4=Albuquerque|first4=SRJ|last5=Farmer|first5=A|date=2005|title=Heterogeneity of serum tryptophan concentration and availability to the brain in patients with the chronic fatigue syndrome.|url=https://www.ncbi.nlm.nih.gov/pubmed/15982993?dopt=Abstract|journal=Journal of Psychopharmacology|volume=19|issue=4|pages=385–391|via=}}</ref> Multiple studies have found high, low, or normal serotonin, due either to different diagnostic criteria or ME/CFS subgroups.<ref name=":0" />

==Risks and safety==
Because 5-HTP increases brain serotonin, users are at risk for [https://en.wikipedia.org/wiki/Serotonin_syndrome serotonin syndrome] if they also take other medications which increase brain serotonin,<ref name="webmd">{{cite web|title=5-HTP Uses, Side effects, Interactions, Doses, and Warnings|url=https://www.webmd.com/vitamins/ai/ingredientmono-794/5-htp|website=WebMD|accessdate=29 May 2018}}</ref>. Medications which come under this category and which are commonly taken be ME/CFS patients include:
* Anti-depressant drugs
* Dextromethorphan (Robitussin DM, and others)
* Tramadol (Ultram)
Other medications, including other supplements, may also increase brain serotonin - make sure you tell your pharmacist and your doctor if you are taking 5-HTP.

==Costs and availability==

==Learn more==
*[https://en.wikipedia.org/wiki/5-Hydroxytryptophan Wikipedia - 5-Hydroxytryptophan]

==See also==
*[[Serotonin]]

==References==
<references />

[[Category:Amino acids]]
[[Category:Potential treatments]]
[[Category:Supplements]]

EUROMENE

2018-06-09T16:55:38Z

Suelala:minor edit of personal name

'''EUROMENE''' stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization. Funding was approved for four years and may be extended longer upon approval. COST refers to the formation of EUROMENE as COST Action 15111 or CA15111.<ref name="COST-CA15111-MOU"/>

The official start date of the organization was 21 April 2016 and is funded until 20 April 2020 unless extension is approved.<ref name="COST-CA15111-PAR"/>

==Countries==
As of spring 2018, the following countries were participating in EUROMENE: [[Belarus]], [[Belgium]], [[Bulgaria]], [[Denmark]], [[Finland]], [[France]], [[Germany]], [[Greece]], [[Ireland]], [[Italy]], [[Latvia]], the [[Netherlands]], [[Norway]], [[Portugal]], [[Serbia]], [[Slovenia]], [[Spain]], [[Sweden]], and the [[United Kingdom]].

==Goals==
The following objectives were listed on the memorandum for the implementation of the network:

'''Research Coordination'''<ref name="COST-CA15111-MOU"/>
* Develop strategies to collect population-based data on the prevalence of ME/CFS, including standardized procedures with pilot studies in selected locations; develop a geographical mapping of ME/CFS epidemiology involving correlations with other mapped information
* Promote co-operation and involvement of research groups with an objective to assess potential biomarkers for ME/CFS capable to evaluation of various infections and immunological disorders as causal factors or comorbidities
* Define a standardized clinical diagnosis for ME/CFS for clinicians and researchers that allows the identification of relatively homogenous sets of patients, who can be studied to identify pathogenesis mechanisms, biomarkers and disease process in a stratified way, as well as to be compared with other researched populations
* Coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease
* Establish communication links with industrial organisations, especially small/medium-sized enterprise (SMEs), in the pharmaceutical, biotechnology and ICT industries in each participating country to develop collaborative research and innovation proposals

'''Capacity Building'''<ref name="COST-CA15111-MOU"/>
* Integrate Early Career Investigators (ECI) into network activities, providing optimal diffusion of knowledge and special translational research skills; Demonstrate ME/CFS as a promising field for carrier development in science
* Foster knowledge exchange on use of synchronised diagnostic criteria and management of research in ME/CFS, -omics and bioinformatics, translational research in ME/CFS by involving relevant stakeholders, interested researchers, ECIs and clinicians, and organizing working groups, seminars, training schools, and Short-Term Scientific Missions (STSMs)
* Provide update in novel ME/CFS knowledge via short training events with an efficient participant involvement

==Management committee==
The following are listed as being participants of the COST Action CA15111 / EUROMENE<ref name="COST-CA15111-MAC"/>:
*Chair - Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
*Vice Chair - Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK

==Working groups==
===Epidemiology working group===
'''Members'''
:Dr. [[Jesús Castro-Marrero]], Vall d'Hebron University Hospital, Barcelona, Spain
:Dr. [[Slobodan Sekulic]], Medical Faculty Novi Sad, Serbia
:Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK
:Dr. [[Fernando Estévez-López]], University of Granada, Granada, Spain
:Dr. [[Nuno Sepulveda]], Centre of Statistics and Application of University of Lisbon, Portugal
'''Substitutes'''
:Dr. [[Maja Vukadinovic]], Novi Sad Business School, Novi Sad, Serbia
:Professor [[Jordi Miro]], Universitat Rovira i Virgili, Spain
'''Participants'''
:Inger Johanne Bakken
:Andrejs Ivanovs
:Francis Guillemin

===Biomarkers working group===
'''Members'''
:Professor [[Carmen Scheibenbogen]], Charite, Germany
:Professor [[Enrica Capelli]], University of Pavia, Pavia, Italy
:Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
:Dr. [[Henrik Nielsen]], PrivatHospitalet Danmark, Denmark
:Professor [[Thomas Harrer]], Universitatsklinikum Erlangen, Germany
:Professor [[Jonas Blomberg]], Uppsala University, Sweden
:Professor [[Jonas Bergquist]], Uppsala University, Sweden
:Professor [[Svetlana Orlova]], RRPCEM, Minsk, Belarus
:Professor [[Mira Meeus]], Universiteit Antwerpen, Belgium
:Professor [[Ivan Brandslund]], Vejle, Denmark
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''Substitutes'''
:Dr. [[Bhupesh Prusty]], Julius Maximilian University of Wuerzburg, Germany
:Dr. Patricia Grabowski, Charite-Universitatsmedizin Berlin, Germany
:Ms. Santa Rasa, Riga Stradins University, Latvia
:Ms. Zaiga Nora-Krukle, Riga Stradins University, Latvia;
:Ms. Helma Freitag, Charite-Universitatsmedizin Berlin, Germany
'''Participants'''
:Professor [[Elisa Oltra]], Universidad Católica de Valencia "San Vicente Mártir", Valencia, Spain
:Dr.Franziska Sotzny, Charité University Medicine Berlin, Campus Virchow, Berlin, Germany
:Dr. Jacqueline Cliff, London School of Hygiene & Tropical Medicine, London, UK
:Artsiom Shtyrau, Belarus

===Socio-economics working group===
'''Members'''
:Professor [[Derek Pheby]], Buckinghamshire New University, United Kingdom
:Dr. [[Uldis Berkis]], Riga Stradins University, Latvia
:Dr [[John Cullinan]], NUI Galway Discipline of Economics, Ireland
:Dr. [[Dominic Trepel]], University of Leeds, Leeds, United Kingdom
:Professor [[Jean-Dominique de Korwin]], Lorraine University and Nancy University Hospital, France
'''Substitutes'''
:Professor [[Jonathan Edwards]], University College London, UK
:Dr [[Julià Blanco]], Fundacio Institut Germans trias i Pujol, Spain
'''Participants'''
:Dr. Lara Gito, University of Rome Tor Vergata, Rome, Italy
:Rachael Hunt
:Elenka Brenna, Università Cattolica del Sacro Cuore, Milano, Italy
:Dr. Xia Wang-Steverding, University of East Anglia, Norwich, U.K.
:Asja Lunga, Riga Stradins University, Latvia

===Clinical research enablers and diagnostic criteria working group===
'''Members'''
:Dr. [[Elin Strand|Elin B. Strand]], Oslo University Hospital HF CFS/ME Centre, Norway;
:Professor [[Jerome Authier]], Paris Est-Creteil University, France
:Dr. [[Magdalena Budisteanu]], "Prof. Dr. Alex. Obregia" Clinical Hospital of Psychiatry, Romania
:Dr. [[Jose Alegre-Martin]], Vall d'Hebron University Hospital, Barcelona, Spain
:Dr [[Olli Polo]], Unesta Research Center, Tampere, Finland
:[[Giorgos Sakkas]]
:Dr [[Ruud Vermeulen]], CVS/ME Medisch Centrum, Amsterdam, Netherlands
:[[Uros Marusic]]
'''Substitutes'''
:Dr. [[Luis Nacul]], London School of Hygiene and Tropical Medicine, UK
:Dr. Ingrid Bergliot Helland, Oslo University Hospital, Norway
:Professor Angelika Krumina, Riga Stradins University, Latvia
:Rado Pišot

===Working Group on conferences, seminars, training schools, STSMs===
'''Conferences, seminars, training schools'''
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''STSM'''
:Dr. [[Els Tobback]], (STSM COORDINATION), University Hospital Ghent, Belgium
:Dr. [[Carmen Adella Sirbu]], Central Military Emergency Hospital, Romania

===Working Group on dissemination and exploitation, patient involvement, digitalisation===
:Dr [[Lorenzo Lorusso]], A.O. Mellino Mellini, Italy
:Professor [[Anne Marit Mengshoel]], University of Oslo, Norway

==Online presence==
*[http://www.euromene.eu/ EUROMENE Website]

==Learn More==
*2017 - [https://translational-medicine.biomedcentral.com/track/pdf/10.1186/s12967-017-1263-z?site=translational-medicine.biomedcentral.com The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE]<ref name="EUROMENE2017"/>
*2015 - [https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf Memorandum of Understanding for the implementation of the COST Action “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (EUROMENE) CA15111]

==References==
<references>

<ref name="COST-CA15111-MAC">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Management Committee of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?management
| date = 2015
}}
</ref>

<ref name="COST-CA15111-PAR">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Parties of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?parties
| date = 2015
}}
</ref>

<ref name="COST-CA15111-MOU">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Memorandum of Understanding for the implementation of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf
| date = 30 Oct 2015
}}
</ref>

<ref name="EUROMENE2017">
{{citation
| last1 = Scheibenbogen | first1 = Carmen | authorlink1 = Carmen Scheibenbogen
| last2 = Freitag | first2 = Helma | authorlink2 = Helma Freitag
| last3 = Blanco | first3 = Julià | authorlink3 = Julià Blanco
| last4 = Capelli | first4 = Enrica | authorlink4 = Enrica Capelli
| last5 = Lacerda | first5 = Eliana | authorlink5 = Eliana Lacerda
| last6 = Authier | first6 = Jerome | authorlink6 = Jerome Authier
| last7 = Meeus | first7 = Mira | authorlink7 = Mira Meeus
| last8 = Castro Marrero | first8 = Jesus | authorlink8 = Jesus Castro-Marrero
| last9 = Nora-Krukle | first9 = Zaiga | authorlink9 = Zaiga Nora-Krukle
| last10 = Oltra | first10 = Elisa | authorlink10 = Elisa Oltra
| last11 = Bolle Strand | first11 = Elin | authorlink11 = Elin Bolle Strand
| last12 = Shikova | first12 = Evelina | authorlink12 = Evelina Shikova
| last13 = Sekulic | first13 = Slobodan | authorlink13 = Slobodan Sekulic
| last14 = Murovska | first14 = Modra | authorlink14 = Modra Murovska
| title = The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE
| journal = Journal of Translational Medicine | volume = 15 | page = 162
| date = 2017
| doi = 10.1186/s12967-017-1263-z
}}
</ref>

</references>

[[Category:Research initiatives]]
[[Category:European research initiatives]]

EUROMENE

2018-06-08T18:04:33Z

Suelala:minor reformat of citations

'''EUROMENE''' stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization. Funding was approved for four years and may be extended longer upon approval. COST refers to the formation of EUROMENE as COST Action 15111 or CA15111.<ref name="COST-CA15111-MOU"/>

The official start date of the organization was 21 April 2016 and is funded until 20 April 2020 unless extension is approved.<ref name="COST-CA15111-PAR"/>

==Countries==
As of spring 2018, the following countries were participating in EUROMENE: [[Belarus]], [[Belgium]], [[Bulgaria]], [[Denmark]], [[Finland]], [[France]], [[Germany]], [[Greece]], [[Ireland]], [[Italy]], [[Latvia]], the [[Netherlands]], [[Norway]], [[Portugal]], [[Serbia]], [[Slovenia]], [[Spain]], [[Sweden]], and the [[United Kingdom]].

==Goals==
The following objectives were listed on the memorandum for the implementation of the network:

'''Research Coordination'''<ref name="COST-CA15111-MOU"/>
* Develop strategies to collect population-based data on the prevalence of ME/CFS, including standardized procedures with pilot studies in selected locations; develop a geographical mapping of ME/CFS epidemiology involving correlations with other mapped information
* Promote co-operation and involvement of research groups with an objective to assess potential biomarkers for ME/CFS capable to evaluation of various infections and immunological disorders as causal factors or comorbidities
* Define a standardized clinical diagnosis for ME/CFS for clinicians and researchers that allows the identification of relatively homogenous sets of patients, who can be studied to identify pathogenesis mechanisms, biomarkers and disease process in a stratified way, as well as to be compared with other researched populations
* Coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease
* Establish communication links with industrial organisations, especially small/medium-sized enterprise (SMEs), in the pharmaceutical, biotechnology and ICT industries in each participating country to develop collaborative research and innovation proposals

'''Capacity Building'''<ref name="COST-CA15111-MOU"/>
* Integrate Early Career Investigators (ECI) into network activities, providing optimal diffusion of knowledge and special translational research skills; Demonstrate ME/CFS as a promising field for carrier development in science
* Foster knowledge exchange on use of synchronised diagnostic criteria and management of research in ME/CFS, -omics and bioinformatics, translational research in ME/CFS by involving relevant stakeholders, interested researchers, ECIs and clinicians, and organizing working groups, seminars, training schools, and Short-Term Scientific Missions (STSMs)
* Provide update in novel ME/CFS knowledge via short training events with an efficient participant involvement

==Management committee==
The following are listed as being participants of the COST Action CA15111 / EUROMENE<ref name="COST-CA15111-MAC"/>:
*Chair - Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
*Vice Chair - Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK

==Working groups==
===Epidemiology working group===
'''Members'''
:Dr. [[Jesus Castro-Marrero]], Vall d'Hebron University Hospital, Spain
:Dr. [[Slobodan Sekulic]], Medical Faculty Novi Sad, Serbia
:Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK
:Dr. [[Fernando Estévez-López]], University of Granada, Granada, Spain
:Dr. [[Nuno Sepulveda]], Centre of Statistics and Application of University of Lisbon, Portugal
'''Substitutes'''
:Dr. [[Maja Vukadinovic]], Novi Sad Business School, Novi Sad, Serbia
:Professor [[Jordi Miro]], Universitat Rovira i Virgili, Spain
'''Participants'''
:Inger Johanne Bakken
:Andrejs Ivanovs
:Francis Guillemin

===Biomarkers working group===
'''Members'''
:Professor [[Carmen Scheibenbogen]], Charite, Germany
:Professor [[Enrica Capelli]], University of Pavia, Pavia, Italy
:Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
:Dr. [[Henrik Nielsen]], PrivatHospitalet Danmark, Denmark
:Professor [[Thomas Harrer]], Universitatsklinikum Erlangen, Germany
:Professor [[Jonas Blomberg]], Uppsala University, Sweden
:Professor [[Jonas Bergquist]], Uppsala University, Sweden
:Professor [[Svetlana Orlova]], RRPCEM, Minsk, Belarus
:Professor [[Mira Meeus]], Universiteit Antwerpen, Belgium
:Professor [[Ivan Brandslund]], Vejle, Denmark
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''Substitutes'''
:Dr. [[Bhupesh Prusty]], Julius Maximilian University of Wuerzburg, Germany
:Dr. Patricia Grabowski, Charite-Universitatsmedizin Berlin, Germany
:Ms. Santa Rasa, Riga Stradins University, Latvia
:Ms. Zaiga Nora-Krukle, Riga Stradins University, Latvia;
:Ms. Helma Freitag, Charite-Universitatsmedizin Berlin, Germany
'''Participants'''
:Professor [[Elisa Oltra]], Universidad Católica de Valencia "San Vicente Mártir", Valencia, Spain
:Dr.Franziska Sotzny, Charité University Medicine Berlin, Campus Virchow, Berlin, Germany
:Dr. Jacqueline Cliff, London School of Hygiene & Tropical Medicine, London, UK
:Artsiom Shtyrau, Belarus

===Socio-economics working group===
'''Members'''
:Professor [[Derek Pheby]], Buckinghamshire New University, United Kingdom
:Dr. [[Uldis Berkis]], Riga Stradins University, Latvia
:Dr [[John Cullinan]], NUI Galway Discipline of Economics, Ireland
:Dr. [[Dominic Trepel]], University of Leeds, Leeds, United Kingdom
:Professor [[Jean-Dominique de Korwin]], Lorraine University and Nancy University Hospital, France
'''Substitutes'''
:Professor [[Jonathan Edwards]], University College London, UK
:Dr [[Julià Blanco]], Fundacio Institut Germans trias i Pujol, Spain
'''Participants'''
:Dr. Lara Gito, University of Rome Tor Vergata, Rome, Italy
:Rachael Hunt
:Elenka Brenna, Università Cattolica del Sacro Cuore, Milano, Italy
:Dr. Xia Wang-Steverding, University of East Anglia, Norwich, U.K.
:Asja Lunga, Riga Stradins University, Latvia

===Clinical research enablers and diagnostic criteria working group===
'''Members'''
:Dr. [[Elin Strand|Elin B. Strand]], Oslo University Hospital HF CFS/ME Centre, Norway;
:Professor [[Jerome Authier]], Paris Est-Creteil University, France
:Dr. [[Magdalena Budisteanu]], "Prof. Dr. Alex. Obregia" Clinical Hospital of Psychiatry, Romania
:Dr. [[Jose Alegre-Martin]], Vall d'Hebron University Hospital, Barcelona, Spain
:Dr [[Olli Polo]], Unesta Research Center, Tampere, Finland
:[[Giorgos Sakkas]]
:Dr [[Ruud Vermeulen]], CVS/ME Medisch Centrum, Amsterdam, Netherlands
:[[Uros Marusic]]
'''Substitutes'''
:Dr. [[Luis Nacul]], London School of Hygiene and Tropical Medicine, UK
:Dr. Ingrid Bergliot Helland, Oslo University Hospital, Norway
:Professor Angelika Krumina, Riga Stradins University, Latvia
:Rado Pišot

===Working Group on conferences, seminars, training schools, STSMs===
'''Conferences, seminars, training schools'''
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''STSM'''
:Dr. [[Els Tobback]], (STSM COORDINATION), University Hospital Ghent, Belgium
:Dr. [[Carmen Adella Sirbu]], Central Military Emergency Hospital, Romania

===Working Group on dissemination and exploitation, patient involvement, digitalisation===
:Dr [[Lorenzo Lorusso]], A.O. Mellino Mellini, Italy
:Professor [[Anne Marit Mengshoel]], University of Oslo, Norway

==Online presence==
*[http://www.euromene.eu/ EUROMENE Website]

==Learn More==
*2017 - [https://translational-medicine.biomedcentral.com/track/pdf/10.1186/s12967-017-1263-z?site=translational-medicine.biomedcentral.com The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE]<ref name="EUROMENE2017"/>
*2015 - [https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf Memorandum of Understanding for the implementation of the COST Action “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (EUROMENE) CA15111]

==References==
<references>

<ref name="COST-CA15111-MAC">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Management Committee of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?management
| date = 2015
}}
</ref>

<ref name="COST-CA15111-PAR">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Parties of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?parties
| date = 2015
}}
</ref>

<ref name="COST-CA15111-MOU">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Memorandum of Understanding for the implementation of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf
| date = 30 Oct 2015
}}
</ref>

<ref name="EUROMENE2017">
{{citation
| last1 = Scheibenbogen | first1 = Carmen | authorlink1 = Carmen Scheibenbogen
| last2 = Freitag | first2 = Helma | authorlink2 = Helma Freitag
| last3 = Blanco | first3 = Julià | authorlink3 = Julià Blanco
| last4 = Capelli | first4 = Enrica | authorlink4 = Enrica Capelli
| last5 = Lacerda | first5 = Eliana | authorlink5 = Eliana Lacerda
| last6 = Authier | first6 = Jerome | authorlink6 = Jerome Authier
| last7 = Meeus | first7 = Mira | authorlink7 = Mira Meeus
| last8 = Castro Marrero | first8 = Jesus | authorlink8 = Jesus Castro Marrero
| last9 = Nora-Krukle | first9 = Zaiga | authorlink9 = Zaiga Nora-Krukle
| last10 = Oltra | first10 = Elisa | authorlink10 = Elisa Oltra
| last11 = Bolle Strand | first11 = Elin | authorlink11 = Elin Bolle Strand
| last12 = Shikova | first12 = Evelina | authorlink12 = Evelina Shikova
| last13 = Sekulic | first13 = Slobodan | authorlink13 = Slobodan Sekulic
| last14 = Murovska | first14 = Modra | authorlink14 = Modra Murovska
| title = The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE
| journal = Journal of Translational Medicine | volume = 15 | page = 162
| date = 2017
| doi = 10.1186/s12967-017-1263-z
}}
</ref>

</references>

[[Category:Research initiatives]]
[[Category:European research initiatives]]

EUROMENE

2018-06-08T17:35:18Z

Suelala:minor reformat

'''EUROMENE''' stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization. Funding was approved for four years and may be extended longer upon approval. COST refers to the formation of EUROMENE as COST Action 15111 or CA15111.<ref name="COST-CA15111-MOU"/>

The official start date of the organization was 21 April 2016 and is funded until 20 April 2020 unless extension is approved.<ref name="COST-CA15111-PAR"/>

==Countries==
As of spring 2018, the following countries were participating in EUROMENE: [[Belarus]], [[Belgium]], [[Bulgaria]], [[Denmark]], [[Finland]], [[France]], [[Germany]], [[Greece]], [[Ireland]], [[Italy]], [[Latvia]], the [[Netherlands]], [[Norway]], [[Portugal]], [[Serbia]], [[Slovenia]], [[Spain]], [[Sweden]], and the [[United Kingdom]].

==Goals==
The following objectives were listed on the memorandum for the implementation of the network:

'''Research Coordination'''<ref name="COST-CA15111-MOU"/>
* Develop strategies to collect population-based data on the prevalence of ME/CFS, including standardized procedures with pilot studies in selected locations; develop a geographical mapping of ME/CFS epidemiology involving correlations with other mapped information
* Promote co-operation and involvement of research groups with an objective to assess potential biomarkers for ME/CFS capable to evaluation of various infections and immunological disorders as causal factors or comorbidities
* Define a standardized clinical diagnosis for ME/CFS for clinicians and researchers that allows the identification of relatively homogenous sets of patients, who can be studied to identify pathogenesis mechanisms, biomarkers and disease process in a stratified way, as well as to be compared with other researched populations
* Coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease
* Establish communication links with industrial organisations, especially small/medium-sized enterprise (SMEs), in the pharmaceutical, biotechnology and ICT industries in each participating country to develop collaborative research and innovation proposals

'''Capacity Building'''<ref name="COST-CA15111-MOU"/>
* Integrate Early Career Investigators (ECI) into network activities, providing optimal diffusion of knowledge and special translational research skills; Demonstrate ME/CFS as a promising field for carrier development in science
* Foster knowledge exchange on use of synchronised diagnostic criteria and management of research in ME/CFS, -omics and bioinformatics, translational research in ME/CFS by involving relevant stakeholders, interested researchers, ECIs and clinicians, and organizing working groups, seminars, training schools, and Short-Term Scientific Missions (STSMs)
* Provide update in novel ME/CFS knowledge via short training events with an efficient participant involvement

==Management committee==
The following are listed as being participants of the COST Action CA15111 / EUROMENE<ref name="COST-CA15111-MAC"/>:
*Chair - Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
*Vice Chair - Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK

==Working groups==
===Epidemiology working group===
'''Members'''
:Dr. [[Jesus Castro-Marrero]], Vall d'Hebron University Hospital, Spain
:Dr. [[Slobodan Sekulic]], Medical Faculty Novi Sad, Serbia
:Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK
:Dr. [[Fernando Estévez-López]], University of Granada, Granada, Spain
:Dr. [[Nuno Sepulveda]], Centre of Statistics and Application of University of Lisbon, Portugal
'''Substitutes'''
:Dr. [[Maja Vukadinovic]], Novi Sad Business School, Novi Sad, Serbia
:Professor [[Jordi Miro]], Universitat Rovira i Virgili, Spain
'''Participants'''
:Inger Johanne Bakken
:Andrejs Ivanovs
:Francis Guillemin

===Biomarkers working group===
'''Members'''
:Professor [[Carmen Scheibenbogen]], Charite, Germany
:Professor [[Enrica Capelli]], University of Pavia, Pavia, Italy
:Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
:Dr. [[Henrik Nielsen]], PrivatHospitalet Danmark, Denmark
:Professor [[Thomas Harrer]], Universitatsklinikum Erlangen, Germany
:Professor [[Jonas Blomberg]], Uppsala University, Sweden
:Professor [[Jonas Bergquist]], Uppsala University, Sweden
:Professor [[Svetlana Orlova]], RRPCEM, Minsk, Belarus
:Professor [[Mira Meeus]], Universiteit Antwerpen, Belgium
:Professor [[Ivan Brandslund]], Vejle, Denmark
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''Substitutes'''
:Dr. [[Bhupesh Prusty]], Julius Maximilian University of Wuerzburg, Germany
:Dr. Patricia Grabowski, Charite-Universitatsmedizin Berlin, Germany
:Ms. Santa Rasa, Riga Stradins University, Latvia
:Ms. Zaiga Nora-Krukle, Riga Stradins University, Latvia;
:Ms. Helma Freitag, Charite-Universitatsmedizin Berlin, Germany
'''Participants'''
:Professor [[Elisa Oltra]], Universidad Católica de Valencia "San Vicente Mártir", Valencia, Spain
:Dr.Franziska Sotzny, Charité University Medicine Berlin, Campus Virchow, Berlin, Germany
:Dr. Jacqueline Cliff, London School of Hygiene & Tropical Medicine, London, UK
:Artsiom Shtyrau, Belarus

===Socio-economics working group===
'''Members'''
:Professor [[Derek Pheby]], Buckinghamshire New University, United Kingdom
:Dr. [[Uldis Berkis]], Riga Stradins University, Latvia
:Dr [[John Cullinan]], NUI Galway Discipline of Economics, Ireland
:Dr. [[Dominic Trepel]], University of Leeds, Leeds, United Kingdom
:Professor [[Jean-Dominique de Korwin]], Lorraine University and Nancy University Hospital, France
'''Substitutes'''
:Professor [[Jonathan Edwards]], University College London, UK
:Dr [[Julià Blanco]], Fundacio Institut Germans trias i Pujol, Spain
'''Participants'''
:Dr. Lara Gito, University of Rome Tor Vergata, Rome, Italy
:Rachael Hunt
:Elenka Brenna, Università Cattolica del Sacro Cuore, Milano, Italy
:Dr. Xia Wang-Steverding, University of East Anglia, Norwich, U.K.
:Asja Lunga, Riga Stradins University, Latvia

===Clinical research enablers and diagnostic criteria working group===
'''Members'''
:Dr. [[Elin Strand|Elin B. Strand]], Oslo University Hospital HF CFS/ME Centre, Norway;
:Professor [[Jerome Authier]], Paris Est-Creteil University, France
:Dr. [[Magdalena Budisteanu]], "Prof. Dr. Alex. Obregia" Clinical Hospital of Psychiatry, Romania
:Dr. [[Jose Alegre-Martin]], Vall d'Hebron University Hospital, Barcelona, Spain
:Dr [[Olli Polo]], Unesta Research Center, Tampere, Finland
:[[Giorgos Sakkas]]
:Dr [[Ruud Vermeulen]], CVS/ME Medisch Centrum, Amsterdam, Netherlands
:[[Uros Marusic]]
'''Substitutes'''
:Dr. [[Luis Nacul]], London School of Hygiene and Tropical Medicine, UK
:Dr. Ingrid Bergliot Helland, Oslo University Hospital, Norway
:Professor Angelika Krumina, Riga Stradins University, Latvia
:Rado Pišot

===Working Group on conferences, seminars, training schools, STSMs===
'''Conferences, seminars, training schools'''
:Professor [[Evelina Shikova-Lekova]], National Center of Infectious and Parasitic Diseases, Bulgaria
'''STSM'''
:Dr. [[Els Tobback]], (STSM COORDINATION), University Hospital Ghent, Belgium
:Dr. [[Carmen Adella Sirbu]], Central Military Emergency Hospital, Romania

===Working Group on dissemination and exploitation, patient involvement, digitalisation===
:Dr [[Lorenzo Lorusso]], A.O. Mellino Mellini, Italy
:Professor [[Anne Marit Mengshoel]], University of Oslo, Norway

==Online presence==
*[http://www.euromene.eu/ EUROMENE Website]

==Learn More==
*2017 - [https://translational-medicine.biomedcentral.com/track/pdf/10.1186/s12967-017-1263-z?site=translational-medicine.biomedcentral.com The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE]<ref>Scheibenbogen, C., Freitag, H., Blanco, J., Capelli, E., Lacerda, E., Authier, J., … Murovska, M. (2017). The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE. Journal of Translational Medicine, 15, 162. http://doi.org/10.1186/s12967-017-1263-z</ref>
*2015 - [https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf Memorandum of Understanding for the implementation of the COST Action “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (EUROMENE) CA15111]

==References==
<references>

<ref name="COST-CA15111-MAC">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Management Committee of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?management
| date = 2015
}}
</ref>

<ref name="COST-CA15111-PAR">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Parties of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = http://www.cost.eu/COST_Actions/ca/CA15111?parties
| date = 2015
}}
</ref>

<ref name="COST-CA15111-MOU">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Memorandum of Understanding for the implementation of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf
| date = 30 Oct 2015
}}
</ref>

</references>
[[Category:Research initiatives]]
[[Category:European research initiatives]]

EUROMENE

2018-06-08T16:56:03Z

Suelala:tidy the text, update hyperlink

'''EUROMENE''' stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization. Funding was approved for four years and may be extended longer upon approval. COST refers to the formation of EUROMENE as COST Action 15111 or CA15111.<ref name="COST-CA15111-MOU"/>

The official start date of the organization was 21 April 2016 and is funded until 20 April 2020 unless extension is approved.<ref>http://www.cost.eu/COST_Actions/ca/CA15111?parties</ref>

==Countries==
As of spring 2018, the following countries were participating in EUROMENE: [[Belarus]], [[Belgium]], [[Bulgaria]], [[Denmark]], [[Finland]], [[France]], [[Germany]], [[Greece]], [[Ireland]], [[Italy]], [[Latvia]], the [[Netherlands]], [[Norway]], [[Portugal]], [[Serbia]], [[Slovenia]], [[Spain]], [[Sweden]], and the [[United Kingdom]].

==Goals==
The following objectives were listed on the memorandum for the implementation of the network:

'''Research Coordination'''<ref name="COST-CA15111-MOU"/>
* Develop strategies to collect population-based data on the prevalence of ME/CFS, including standardized procedures with pilot studies in selected locations; develop a geographical mapping of ME/CFS epidemiology involving correlations with other mapped information
* Promote co-operation and involvement of research groups with an objective to assess potential biomarkers for ME/CFS capable to evaluation of various infections and immunological disorders as causal factors or comorbidities
* Define a standardized clinical diagnosis for ME/CFS for clinicians and researchers that allows the identification of relatively homogenous sets of patients, who can be studied to identify pathogenesis mechanisms, biomarkers and disease process in a stratified way, as well as to be compared with other researched populations
* Coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease
* Establish communication links with industrial organisations, especially small/medium-sized enterprise (SMEs), in the pharmaceutical, biotechnology and ICT industries in each participating country to develop collaborative research and innovation proposals

'''Capacity Building'''<ref name="COST-CA15111-MOU"/>
* Integrate Early Career Investigators (ECI) into network activities, providing optimal diffusion of knowledge and special translational research skills; Demonstrate ME/CFS as a promising field for carrier development in science
* Foster knowledge exchange on use of synchronised diagnostic criteria and management of research in ME/CFS, -omics and bioinformatics, translational research in ME/CFS by involving relevant stakeholders, interested researchers, ECIs and clinicians, and organizing working groups, seminars, training schools, and Short-Term Scientific Missions (STSMs)
* Provide update in novel ME/CFS knowledge via short training events with an efficient participant involvement

==Management committee==
The following are listed as being participants of the COST Action CA15111/EUROMENE<ref>http://www.cost.eu/COST_Actions/ca/CA15111?management</ref>:
*Chair - Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
*Vice Chair - Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK

==Working groups==
===Epidemiology working group===
'''Members'''
:Dr. [[Jesus Castro-Marrero]], Vall d'Hebron University Hospital, Spain
:Dr. Slobodan Sekulic, Medical Faculty Novi Sad, Serbia
:Dr. [[Eliana Lacerda]], London School of Hygiene & Tropical Medicine, London, UK
:Dr. Fernando Estévez-López, University of Granada, Granada, Spain
:Dr. Nuno Sepulveda, Centre of Statistics and Application of University of Lisbon, Portugal
'''Substitutes'''
:Dr. Maja Vukadinovic, Novi Sad Business School, Novi Sad, Serbia
:Professor Jordi Miro, Universitat Rovira i Virgili, Spain
'''Participants'''
:Inger Johanne Bakken
:Andrejs Ivanovs
:Francis Guillemin

===Biomarkers working group===
'''Members'''
:Professor [[Carmen Scheibenbogen]], Charite, Germany
:Professor Enrica Capelli, University of Pavia, Pavia, Italy
:Professor [[Modra Murovska]], Riga Stradins University, Riga, Latvia
:Dr. Henrik Nielsen, PrivatHospitalet Danmark, Denmark
:Professor Thomas Harrer, Universitatsklinikum Erlangen, Germany
:Professor [[Jonas Blomberg]], Uppsala University, Sweden
:Professor [[Jonas Bergquist]], Uppsala University, Sweden
:Professor Svetlana Orlova, RRPCEM, Minsk, Belarus
:Professor Mira Meeus, Universiteit Antwerpen, Belgium
:Professor Ivan Brandslund, Vejle, Denmark
:Professor Evelina Shikova-Lekova, National Center of Infectious and Parasitic Diseases, Bulgaria
'''Substitutes'''
:Dr. [[Bhupesh Prusty]], Julius Maximilian University of Wuerzburg, Germany
:Dr. Patricia Grabowski, Charite-Universitatsmedizin Berlin, Germany
:Ms. Santa Rasa, Riga Stradins University, Latvia
:Ms. Zaiga Nora-Krukle, Riga Stradins University, Latvia;
:Ms. Helma Freitag, Charite-Universitatsmedizin Berlin, Germany
'''Participants'''
:Professor [[Elisa Oltra]], Universidad Católica de Valencia "San Vicente Mártir", Valencia, Spain
:Dr.Franziska Sotzny, Charité University Medicine Berlin, Campus Virchow, Berlin, Germany
:Dr. Jacqueline Cliff, London School of Hygiene & Tropical Medicine, London, UK
:Artsiom Shtyrau, Belarus

===Socio-economics working group===
'''Members'''
:Professor [[Derek Pheby]], Buckinghamshire New University, United Kingdom
:Dr. Uldis Berkis, Riga Stradins University, Latvia
:Dr John Cullinan, NUI Galway Discipline of Economics, Ireland
:Dr. Dominic Trepel, University of Leeds, Leeds, United Kingdom
:Professor Jean-Dominique de Korwin, Lorraine University and Nancy University Hospital, France
'''Substitutes'''
:Professor [[Jonathan Edwards]], University College London, UK
:Dr [[Julià Blanco]], Fundacio Institut Germans trias i Pujol, Spain
'''Participants'''
:Dr. Lara Gito, University of Rome Tor Vergata, Rome, Italy
:Rachael Hunt
:Elenka Brenna, Università Cattolica del Sacro Cuore, Milano, Italy
:Dr. Xia Wang-Steverding, University of East Anglia, Norwich, U.K.
:Asja Lunga, Riga Stradins University, Latvia

===Clinical Research Enablers and Diagnostic Criteria working group===
'''Members'''
:Dr. [[Elin Strand|Elin B. Strand]], Oslo University Hospital HF CFS/ME Centre, Norway;
:Professor Jerome Authier, Paris Est-Creteil University, France
:Dr. Magdalena Budisteanu, "Prof. Dr. Alex. Obregia" Clinical Hospital of Psychiatry, Romania
:Dr. [[Jose Alegre-Martin]], Vall d'Hebron University Hospital, Barcelona, Spain
:Dr [[Olli Polo]], Unesta Research Center, Tampere, Finland
:Giorgos Sakkas
:Dr Ruud Vermeulen, CVS/ME Medisch Centrum, Amsterdam, Netherlands
:Uros Marusic
'''Substitutes'''
:Dr. [[Luis Nacul]], London School of Hygiene and Tropical Medicine, UK
:Dr. Ingrid Bergliot Helland, Oslo University Hospital, Norway
:Professor Angelika Krumina, Riga Stradins University, Latvia
:Rado Pišot

===Working Group on conferences, seminars, training schools, STSMs===
'''Conferences, seminars, training schools'''
:Professor Evelina Shikova-Lekova, National Center of Infectious and Parasitic Diseases, Bulgaria
'''STSM'''
:Dr. Els Tobback, (STSM COORDINATION), University Hospital Ghent, Belgium
:Dr. Carmen Adella Sirbu, Central Military Emergency Hospital, Romania

===Working Group on dissemination and exploitation, patient involvement, digitalisation===
:Dr Lorenzo Lorusso, A.O. Mellino Mellini, Italy
:Professor Anne Marit Mengshoel, University of Oslo, Norway

==Online presence==
*[http://www.euromene.eu/ EUROMENE Website]

==Learn More==
*2017 - [https://translational-medicine.biomedcentral.com/track/pdf/10.1186/s12967-017-1263-z?site=translational-medicine.biomedcentral.com The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE]<ref>Scheibenbogen, C., Freitag, H., Blanco, J., Capelli, E., Lacerda, E., Authier, J., … Murovska, M. (2017). The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE. Journal of Translational Medicine, 15, 162. http://doi.org/10.1186/s12967-017-1263-z</ref>
*2015 - [https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf Memorandum of Understanding for the implementation of the COST Action “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (EUROMENE) CA15111]

==References==
<references>

<ref name="COST-CA15111-MOU">
{{citation
| author = European Cooperation in Science and Technology (COST)
| title = Memorandum of Understanding for the implementation of the COST Action "European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (EUROMENE) CA15111
| url = https://e-services.cost.eu/files/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf
| date = 30 Oct 2015
}}
</ref>

</references>
[[Category:Research initiatives]]
[[Category:European research initiatives]]

José Alegre

2018-06-08T16:17:08Z

Suelala:fix accent on 'José'

'''José Alegre''', (AKA '''José Alegre-Martin'''), MD, PhD, works in the Internal Medicine Division, [[ME/CFS|CFS/ME]] Clinical Unit, Vall d ́Hebron University Hospital, Research Institute Vall d’Hebron Campus, Universitat Autònoma de Barcelona (UAB), Barcelona, Spain.<ref name="Euromene-AlegreCV2017"/>

==EUROMENE==
Dr. Alegre is a Member of the Clinical Research Enablers And Diagnostic Criteria Working Group for [[EUROMENE]], a European Union not-for-profit research organization committed to tackling the cause and treatment for [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]].<ref name="Euromene-CREDCWG"/>

==Notable studies==
*2018, Circadian rhythm abnormalities and [[autonomic dysfunction]] in patients with [[ME/CFS|Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]<ref>Cambras T, Castro-Marrero J, Zaragoza MC, Díez-Noguera A, Alegre J (2018) Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. PLoS ONE 13(6): e0198106. https://doi.org/10.1371/journal.pone.0198106</ref> [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0198106 (Full Text)]
*2018, Poor self‐reported sleep quality and health‐related quality of life in patients with chronic fatigue syndrome/myalgic encephalomyelitis<ref name="Castro-Marrero, 2018 May 16"/> [https://www.ncbi.nlm.nih.gov/pubmed/29770505 (Abstract)]
*2018, Circulating extracellular vesicles as potential [[biomarker]]s in [[ME/CFS|chronic fatigue syndrome/myalgic encephalomyelitis]]: an exploratory pilot study<ref name="Castro-Marrero, 2018"/> [https://www.tandfonline.com/doi/full/10.1080/20013078.2018.1453730 (Full Text)]
*2017, Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome<ref name="Castro-Marrero, 2017"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/ (Full Text)]
*2017, Comorbidity in [[ME/CFS|Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]: A Nationwide Population-Based Cohort Study<ref name="Faro, 2017"/> [https://www.ncbi.nlm.nih.gov/pubmed/28596045 (Abstract)]
*2015, Does Oral [[Coenzyme Q10]] Plus [[NADH]] Supplementation Improve Fatigue and Biochemical Parameters in [[Chronic Fatigue Syndrome]]?<ref name="Castro-Marrero, 2015"/>
*2015, Childhood trauma in [[Chronic Fatigue Syndrome]]: focus on personality disorders and psychopathology<ref name="Sáez-Francàs, 2015"/> [https://www.ncbi.nlm.nih.gov/pubmed/26343462 (Abstract)]
*2015, [[Gender]] Differences in [[Chronic Fatigue Syndrome]]<ref name="Faro, 2015"/> [http://www.reumatologiaclinica.org/en/gender-differences-in-chronic-fatigue/articulo/S2173574316000289/ (Full Text)]
*2015, Diagnostic concordance between categorical and dimensional instrument to assess personality in [[chronic fatigue syndrome]]: PDQ-4+ and TCI-R<ref name="Calvo, 2015"/> [https://econtent.hogrefe.com/doi/abs/10.1027/1015-5759/a000281 (Abstract)]
*2014, Impact of the [[fibromyalgia]] in the [[chronic fatigue syndrome]]<ref name="Faro, 2014"/> [http://europepmc.org/abstract/med/24387955 (Abstract)]
*2014, Neuropsychological Impairment in Female Patients with [[Chronic Fatigue Syndrome]]: A Preliminary Study<ref>Pilar Santamarina-Perez , Francisco Jose Eiroa-Orosa , Amanda Rodriguez-Urrutia , Adil Qureshi & Jose Alegre. (2013). Neuropsychological Impairment in Female Patients with Chronic Fatigue Syndrome: A Preliminary Study. Applied Neuropsychology: Adult, Volume 21, Issue 2, pp 120-127. doi:10.1080/09084282.2013.771264</ref> [https://www.tandfonline.com/doi/abs/10.1080/09084282.2013.771264 (Abstract)]
*2013, Screening [[Natural killer cell|NK-]], [[B cell|B-]] and [[T cell|T-Cell]] phenotype and function in patients suffering from [[Chronic Fatigue Syndrome]]<ref name="Curriu, 2013"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614537/ (Full Text)]
*2013, Could [[Mitochondria|mitochondrial]] dysfunction be a differentiating marker between [[chronic fatigue syndrome]] and [[fibromyalgia]]?<ref name="Castro-Marrero, 2013"/> [https://www.liebertpub.com/doi/abs/10.1089/ars.2013.5346 (Abstract)]

==Talks and interviews==

==Online presence==
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Alegre%20J%5BAuthor%5D&cauthor=true&cauthor_uid=25386668 PubMed]

==Learn more==
*[http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf Curriculum Vitae - José Alegre]

==See also==

==References==
<references>

<ref name="Euromene-AlegreCV2017">{{citation
| title = Euromene: Curriculum Vitae - José Alegre, MD; PhD
| url = http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf
| date = Nov 2017
}}</ref>
<ref name="Euromene-CREDCWG">{{citation
| title = Euromene: Clinical Research Enablers and Diagnostic Criteria Working Group
| url = http://www.euromene.eu/workinggroups/researchenablers.html
| date =
}}</ref>

<ref name="Calvo, 2015">
{{Citation
| last1 = Calvo | first1 = N. | authorlink1 =
| last2 = Sáez-Francas | first2 = N. | authorlink2 =
| last3 = Valero | first3 = S. | authorlink3 =
| last4 = Castro-Marrero | first4 = J. | authorlink4 = Jesús Castro-Marrero
| last5 = Alegre | first5 = J. | authorlink5 = José Alegre
| last6 = Casas | first6 = M. | authorlink6 =
| title = Diagnostic concordance between categorical and dimensional instrument to assess personality in chronic fatigue syndrome: PDQ-4+ and TCI-R
| journal = European Journal of Psychological Assessment | volume = 33 | issue = | page = 158-165
| date = 2015
| pmid =
| doi = 10.1027/1015-5759/a000281
}}
</ref>
<ref name="Castro-Marrero, 2013">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Cordero | first2 = M.D. | authorlink2 =
| last3 = Sáez-Francas | first3 = N. | authorlink3 =
| last4 = Jimenez-Gutierrez | first4 = C. | authorlink4 =
| last5 = Aguilar-Montilla | first5 = F.J. | authorlink5 =
| last6 = Aliste | first6 = L. | authorlink6 =
| last7 = Alegre-Martin | first7 = J. | authorlink7 = José Alegre
| title = Could mitochondrial dysfunction be a differentiating marker between chronic fatigue syndrome and fibromyalgia?
| journal = Antioxidants & Redox Signaling | volume = 19 | issue = 15 | page = 1855-1860
| date = 2013
| pmid = 23600892
| doi = 10.1089/ars.2013.5346
}}
</ref>
<ref name="Castro-Marrero, 2015">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Cordero | first2 = M.D. | authorlink2 =
| last3 = Segundo | first3 = M.J. | authorlink3 =
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Calvo | first5 = N. | authorlink5 =
| last6 = Román-Malo | first6 = L. | authorlink6 =
| last7 = Aliste | first7 = L. | authorlink7 =
| last8 = Fernández de Sevilla | first8 = T. | authorlink8 =
| last9 = Alegre | first9 = J. | authorlink9 = José Alegre
| title = Does Oral Coenzyme Q10 Plus NADH Supplementation Improve Fatigue and Biochemical Parameters in Chronic Fatigue Syndrome?
| journal = Antioxidants & Redox Signaling | volume = 22 | issue = 8 | page = 679–685
| date = 2015
| pmid = 25386668
| doi = 10.1089/ars.2014.6181
}}
</ref>
<ref name="Castro-Marrero, 2017">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Santillo | first5 = D. | authorlink5 =
| last9 = Alegre | first9 = J. | authorlink9 = José Alegre
| title = Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome
| journal = British Journal of Pharmacology | volume = 174 | issue = 5 | page = 345–369
| date = 2017
| pmid = 28052319
| doi = 10.1111/bph.13702
}}
</ref>
<ref name="Castro-Marrero, 2018">
{{Citation
| last1 = Castro-Marrero | first1 = Jesús | authorlink1 = Jesús Castro-Marrero
| last2 = Serrano-Pertierra | first2 = Esther | authorlink2 =
| last3 = Oliveira-Rodríguez | first3 = Myriam | authorlink3 =
| last4 = Zaragozá | first4 = Maria Cleofé | authorlink4 =
| last5 = Martínez-Martínez | first5 = Alba | authorlink5 =
| last6 = Blanco-López | first6 = María del Carmen | authorlink6 =
| last7 = Alegre | first7 = José | authorlink7 = José Alegre
| title = Circulating extracellular vesicles as potential biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis: an exploratory pilot study
| journal = Journal of Extracellular Vesicles | volume = 7 | issue = 1 | page =
| date = 2018
| pmid =
| doi = 10.1080/20013078.2018.1453730
}}
</ref>
<ref name="Castro-Marrero, 2018 May 16">
{{Citation
| last1 = Castro-Marrero | first1 = Jesús | authorlink1 = Jesús Castro-Marrero
| last2 = Zaragozá | first2 = Maria Cleofé | authorlink2 =
| last3 = González-Garcia | first3 = Sergio | authorlink3 =
| last4 = Aliste | first4 = Luisa | authorlink4 =
| last5 = Sáez-Francàs | first5 = Naia | authorlink5 =
| last6 = Romero | first6 = Odile | authorlink6 =
| last7 = Ferré | first7 = Alex | authorlink7 =
| last8 = Fernández de Sevilla | first8 = Tomás | authorlink8 =
| last9 = Alegre | first9 = José | authorlink9 = José Alegre
| title = Poor self-reported sleep quality and health-related quality of life in patients with chronic fatigue syndrome/myalgic encephalomyelitis
| journal = J Sleep Res | volume = | issue = | page = e12703
| date = 2018
| pmid = 29770505
| doi = 10.1111/jsr.12703
}}
</ref>
<ref name="Curriu, 2013">
{{Citation
| last1 = Curriu | first1 = Marta | authorlink1 =
| last2 = Carrillo | first2 = Jorge | authorlink2 =
| last3 = Massanella | first3 = Marta | authorlink3 =
| last4 = Rigau | first4 = Josepa | authorlink4 =
| last5 = Alegre | first5 = José | authorlink5 = José Alegre
| last6 = Puig | first6 = Jordi | authorlink6 =
| last7 = Garcia-Quintana | first7 = Ana M | authorlink7 =
| last8 = Castro-Marrero | first8 = Jesús | authorlink8 = Jesús Castro-Marrero
| last9 = Negredo | first9 = Eugènia | authorlink9 =
| last10 = Clotet | first10 = Bonaventura | authorlink10 =
| last11 = Cabrera | first11 = Cecilia | authorlink11 =
| last12 = Blanco | first12 = Julià | authorlink12 = Julià Blanco
| title = Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome
| journal = Journal of Translational Medicine | volume = 11 | issue = 68 | page =
| date = 2013
| pmid =
| doi = 10.1186/1479-5876-11-68
}}
</ref>
<ref name="Faro, 2014">
{{Citation
| last1 = Faro | first1 = M. | authorlink1 =
| last2 = Sáez-Francàs | first2 = N. | authorlink2 =
| last3 = Castro-Marrero | first3 = J. | authorlink3 = Jesús Castro-Marrero
| last4 = Aliste | first4 = L. | authorlink4 =
| last5 = Collado | first5 = A. | authorlink5 =
| last6 = Alegre | first6 = J. | authorlink6 = José Alegre
| title = Impact of the fibromyalgia in the chronic fatigue syndrome
| journal = Medicina Clinica (Barc) | volume = 142 | issue = 12 | page = 519-525
| date = 2014
| pmid = 24387955
| doi = 10.1016/j.medcli.2013.06.030
}}
</ref>
<ref name="Faro, 2015">
{{Citation
| last1 = Faro | first1 = Mónica | authorlink1 =
| last2 = Sáez-Francàs | first2 = Naia | authorlink2 =
| last3 = Castro-Marrero | first3 = Jesús | authorlink3 = Jesús Castro-Marrero
| last4 = Aliste | first4 = Luisa | authorlink4 =
| last5 = Fernández de Sevilla | first5 = Tomás | authorlink5 =
| last6 = Alegre | first6 = Jose | authorlink6 = José Alegre
| title = Gender Differences in Chronic Fatigue Syndrome
| journal = Reumatologia clinica | volume = 12 | issue = 2 | page =
| date = 2015
| pmid =
| doi = 10.1016/j.reuma.2015.05.007
}}
</ref>
<ref name="Faro, 2017">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Faro | first2 = M. | authorlink2 =
| last3 = Aliste | first3 = L. | authorlink3 =
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Calvo | first5 = N. | authorlink5 =
| last6 = Martínez-Martínez | first6 = A. | authorlink6 =
| last7 = de Sevilla | first7 = T.F. | authorlink7 =
| last8 = Alegre | first8 = J. | authorlink8 = José Alegre
| title = Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study
| journal = Psychosomatics | volume = 58 | issue = 5 | page = 533 - 543
| date = 2017
| pmid =
| doi = 10.1016/j.psym.2017.04.010
}}
</ref>
<ref name="Sáez-Francàs, 2015">
{{Citation
| last1 = Sáez-Francàs | first1 = Naia | authorlink1 =
| last2 = Calvo | first2 = Natalia | authorlink2 =
| last3 = Alegre | first3 = José | authorlink3 = José Alegre
| last4 = Castro-Marrero | first4 = Jesús | authorlink4 = Jesús Castro-Marrero
| last5 = Casas | first5 = Miguel | authorlink5 =
| title = Childhood trauma in Chronic Fatigue Syndrome: focus on personality disorders and psychopathology
| journal = Comprehensive Psychiatry | volume = 62 | issue = | page = 13-19
| date = 2015
| pmid =
| doi = 10.1016/j.comppsych.2015.06.010
}}
</ref>

</references>

[[Category:Researchers]]
[[Category:Spain researchers]]
[[Category:Clinicians]]
[[Category:Spanish clinicians]]

José Alegre

2018-06-08T16:13:17Z

Suelala:adjust citations

'''José Alegre''', (AKA '''José Alegre-Martin'''), MD, PhD, works in the Internal Medicine Division, [[ME/CFS|CFS/ME]] Clinical Unit, Vall d ́Hebron University Hospital, Research Institute Vall d’Hebron Campus, Universitat Autònoma de Barcelona (UAB), Barcelona, Spain.<ref name="Euromene-AlegreCV2017"/>

==EUROMENE==
Dr. Alegre is a Member of the Clinical Research Enablers And Diagnostic Criteria Working Group for [[EUROMENE]], a European Union not-for-profit research organization committed to tackling the cause and treatment for [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]].<ref name="Euromene-CREDCWG"/>

==Notable studies==
*2018, Circadian rhythm abnormalities and [[autonomic dysfunction]] in patients with [[ME/CFS|Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]<ref>Cambras T, Castro-Marrero J, Zaragoza MC, Díez-Noguera A, Alegre J (2018) Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. PLoS ONE 13(6): e0198106. https://doi.org/10.1371/journal.pone.0198106</ref> [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0198106 (Full Text)]
*2018, Poor self‐reported sleep quality and health‐related quality of life in patients with chronic fatigue syndrome/myalgic encephalomyelitis<ref name="Castro-Marrero, 2018 May 16"/> [https://www.ncbi.nlm.nih.gov/pubmed/29770505 (Abstract)]
*2018, Circulating extracellular vesicles as potential [[biomarker]]s in [[ME/CFS|chronic fatigue syndrome/myalgic encephalomyelitis]]: an exploratory pilot study<ref name="Castro-Marrero, 2018"/> [https://www.tandfonline.com/doi/full/10.1080/20013078.2018.1453730 (Full Text)]
*2017, Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome<ref name="Castro-Marrero, 2017"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/ (Full Text)]
*2017, Comorbidity in [[ME/CFS|Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]: A Nationwide Population-Based Cohort Study<ref name="Faro, 2017"/> [https://www.ncbi.nlm.nih.gov/pubmed/28596045 (Abstract)]
*2015, Does Oral [[Coenzyme Q10]] Plus [[NADH]] Supplementation Improve Fatigue and Biochemical Parameters in [[Chronic Fatigue Syndrome]]?<ref name="Castro-Marrero, 2015"/>
*2015, Childhood trauma in [[Chronic Fatigue Syndrome]]: focus on personality disorders and psychopathology<ref name="Sáez-Francàs, 2015"/> [https://www.ncbi.nlm.nih.gov/pubmed/26343462 (Abstract)]
*2015, [[Gender]] Differences in [[Chronic Fatigue Syndrome]]<ref name="Faro, 2015"/> [http://www.reumatologiaclinica.org/en/gender-differences-in-chronic-fatigue/articulo/S2173574316000289/ (Full Text)]
*2015, Diagnostic concordance between categorical and dimensional instrument to assess personality in [[chronic fatigue syndrome]]: PDQ-4+ and TCI-R<ref name="Calvo, 2015"/> [https://econtent.hogrefe.com/doi/abs/10.1027/1015-5759/a000281 (Abstract)]
*2014, Impact of the [[fibromyalgia]] in the [[chronic fatigue syndrome]]<ref name="Faro, 2014"/> [http://europepmc.org/abstract/med/24387955 (Abstract)]
*2014, Neuropsychological Impairment in Female Patients with [[Chronic Fatigue Syndrome]]: A Preliminary Study<ref>Pilar Santamarina-Perez , Francisco Jose Eiroa-Orosa , Amanda Rodriguez-Urrutia , Adil Qureshi & Jose Alegre. (2013). Neuropsychological Impairment in Female Patients with Chronic Fatigue Syndrome: A Preliminary Study. Applied Neuropsychology: Adult, Volume 21, Issue 2, pp 120-127. doi:10.1080/09084282.2013.771264</ref> [https://www.tandfonline.com/doi/abs/10.1080/09084282.2013.771264 (Abstract)]
*2013, Screening [[Natural killer cell|NK-]], [[B cell|B-]] and [[T cell|T-Cell]] phenotype and function in patients suffering from [[Chronic Fatigue Syndrome]]<ref name="Curriu, 2013"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614537/ (Full Text)]
*2013, Could [[Mitochondria|mitochondrial]] dysfunction be a differentiating marker between [[chronic fatigue syndrome]] and [[fibromyalgia]]?<ref name="Castro-Marrero, 2013"/> [https://www.liebertpub.com/doi/abs/10.1089/ars.2013.5346 (Abstract)]

==Talks and interviews==

==Online presence==
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Alegre%20J%5BAuthor%5D&cauthor=true&cauthor_uid=25386668 PubMed]

==Learn more==
*[http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf Curriculum Vitae - Jose Alegre]

==See also==

==References==
<references>

<ref name="Euromene-AlegreCV2017">{{citation
| title = Euromene: Curriculum Vitae - Jose Alegre, MD; PhD
| url = http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf
| date = Nov 2017
}}</ref>
<ref name="Euromene-CREDCWG">{{citation
| title = Euromene: Clinical Research Enablers and Diagnostic Criteria Working Group
| url = http://www.euromene.eu/workinggroups/researchenablers.html
| date =
}}</ref>

<ref name="Calvo, 2015">
{{Citation
| last1 = Calvo | first1 = N. | authorlink1 =
| last2 = Sáez-Francas | first2 = N. | authorlink2 =
| last3 = Valero | first3 = S. | authorlink3 =
| last4 = Castro-Marrero | first4 = J. | authorlink4 = Jesús Castro-Marrero
| last5 = Alegre | first5 = J. | authorlink5 = José Alegre
| last6 = Casas | first6 = M. | authorlink6 =
| title = Diagnostic concordance between categorical and dimensional instrument to assess personality in chronic fatigue syndrome: PDQ-4+ and TCI-R
| journal = European Journal of Psychological Assessment | volume = 33 | issue = | page = 158-165
| date = 2015
| pmid =
| doi = 10.1027/1015-5759/a000281
}}
</ref>
<ref name="Castro-Marrero, 2013">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Cordero | first2 = M.D. | authorlink2 =
| last3 = Sáez-Francas | first3 = N. | authorlink3 =
| last4 = Jimenez-Gutierrez | first4 = C. | authorlink4 =
| last5 = Aguilar-Montilla | first5 = F.J. | authorlink5 =
| last6 = Aliste | first6 = L. | authorlink6 =
| last7 = Alegre-Martin | first7 = J. | authorlink7 = José Alegre
| title = Could mitochondrial dysfunction be a differentiating marker between chronic fatigue syndrome and fibromyalgia?
| journal = Antioxidants & Redox Signaling | volume = 19 | issue = 15 | page = 1855-1860
| date = 2013
| pmid = 23600892
| doi = 10.1089/ars.2013.5346
}}
</ref>
<ref name="Castro-Marrero, 2015">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Cordero | first2 = M.D. | authorlink2 =
| last3 = Segundo | first3 = M.J. | authorlink3 =
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Calvo | first5 = N. | authorlink5 =
| last6 = Román-Malo | first6 = L. | authorlink6 =
| last7 = Aliste | first7 = L. | authorlink7 =
| last8 = Fernández de Sevilla | first8 = T. | authorlink8 =
| last9 = Alegre | first9 = J. | authorlink9 = José Alegre
| title = Does Oral Coenzyme Q10 Plus NADH Supplementation Improve Fatigue and Biochemical Parameters in Chronic Fatigue Syndrome?
| journal = Antioxidants & Redox Signaling | volume = 22 | issue = 8 | page = 679–685
| date = 2015
| pmid = 25386668
| doi = 10.1089/ars.2014.6181
}}
</ref>
<ref name="Castro-Marrero, 2017">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Santillo | first5 = D. | authorlink5 =
| last9 = Alegre | first9 = J. | authorlink9 = José Alegre
| title = Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome
| journal = British Journal of Pharmacology | volume = 174 | issue = 5 | page = 345–369
| date = 2017
| pmid = 28052319
| doi = 10.1111/bph.13702
}}
</ref>
<ref name="Castro-Marrero, 2018">
{{Citation
| last1 = Castro-Marrero | first1 = Jesús | authorlink1 = Jesús Castro-Marrero
| last2 = Serrano-Pertierra | first2 = Esther | authorlink2 =
| last3 = Oliveira-Rodríguez | first3 = Myriam | authorlink3 =
| last4 = Zaragozá | first4 = Maria Cleofé | authorlink4 =
| last5 = Martínez-Martínez | first5 = Alba | authorlink5 =
| last6 = Blanco-López | first6 = María del Carmen | authorlink6 =
| last7 = Alegre | first7 = José | authorlink7 = José Alegre
| title = Circulating extracellular vesicles as potential biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis: an exploratory pilot study
| journal = Journal of Extracellular Vesicles | volume = 7 | issue = 1 | page =
| date = 2018
| pmid =
| doi = 10.1080/20013078.2018.1453730
}}
</ref>
<ref name="Castro-Marrero, 2018 May 16">
{{Citation
| last1 = Castro-Marrero | first1 = Jesús | authorlink1 = Jesús Castro-Marrero
| last2 = Zaragozá | first2 = Maria Cleofé | authorlink2 =
| last3 = González-Garcia | first3 = Sergio | authorlink3 =
| last4 = Aliste | first4 = Luisa | authorlink4 =
| last5 = Sáez-Francàs | first5 = Naia | authorlink5 =
| last6 = Romero | first6 = Odile | authorlink6 =
| last7 = Ferré | first7 = Alex | authorlink7 =
| last8 = Fernández de Sevilla | first8 = Tomás | authorlink8 =
| last9 = Alegre | first9 = José | authorlink9 = José Alegre
| title = Poor self-reported sleep quality and health-related quality of life in patients with chronic fatigue syndrome/myalgic encephalomyelitis
| journal = J Sleep Res | volume = | issue = | page = e12703
| date = 2018
| pmid = 29770505
| doi = 10.1111/jsr.12703
}}
</ref>
<ref name="Curriu, 2013">
{{Citation
| last1 = Curriu | first1 = Marta | authorlink1 =
| last2 = Carrillo | first2 = Jorge | authorlink2 =
| last3 = Massanella | first3 = Marta | authorlink3 =
| last4 = Rigau | first4 = Josepa | authorlink4 =
| last5 = Alegre | first5 = José | authorlink5 = José Alegre
| last6 = Puig | first6 = Jordi | authorlink6 =
| last7 = Garcia-Quintana | first7 = Ana M | authorlink7 =
| last8 = Castro-Marrero | first8 = Jesús | authorlink8 = Jesús Castro-Marrero
| last9 = Negredo | first9 = Eugènia | authorlink9 =
| last10 = Clotet | first10 = Bonaventura | authorlink10 =
| last11 = Cabrera | first11 = Cecilia | authorlink11 =
| last12 = Blanco | first12 = Julià | authorlink12 = Julià Blanco
| title = Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome
| journal = Journal of Translational Medicine | volume = 11 | issue = 68 | page =
| date = 2013
| pmid =
| doi = 10.1186/1479-5876-11-68
}}
</ref>
<ref name="Faro, 2014">
{{Citation
| last1 = Faro | first1 = M. | authorlink1 =
| last2 = Sáez-Francàs | first2 = N. | authorlink2 =
| last3 = Castro-Marrero | first3 = J. | authorlink3 = Jesús Castro-Marrero
| last4 = Aliste | first4 = L. | authorlink4 =
| last5 = Collado | first5 = A. | authorlink5 =
| last6 = Alegre | first6 = J. | authorlink6 = José Alegre
| title = Impact of the fibromyalgia in the chronic fatigue syndrome
| journal = Medicina Clinica (Barc) | volume = 142 | issue = 12 | page = 519-525
| date = 2014
| pmid = 24387955
| doi = 10.1016/j.medcli.2013.06.030
}}
</ref>
<ref name="Faro, 2015">
{{Citation
| last1 = Faro | first1 = Mónica | authorlink1 =
| last2 = Sáez-Francàs | first2 = Naia | authorlink2 =
| last3 = Castro-Marrero | first3 = Jesús | authorlink3 = Jesús Castro-Marrero
| last4 = Aliste | first4 = Luisa | authorlink4 =
| last5 = Fernández de Sevilla | first5 = Tomás | authorlink5 =
| last6 = Alegre | first6 = Jose | authorlink6 = José Alegre
| title = Gender Differences in Chronic Fatigue Syndrome
| journal = Reumatologia clinica | volume = 12 | issue = 2 | page =
| date = 2015
| pmid =
| doi = 10.1016/j.reuma.2015.05.007
}}
</ref>
<ref name="Faro, 2017">
{{Citation
| last1 = Castro-Marrero | first1 = J. | authorlink1 = Jesús Castro-Marrero
| last2 = Faro | first2 = M. | authorlink2 =
| last3 = Aliste | first3 = L. | authorlink3 =
| last4 = Sáez-Francàs | first4 = N. | authorlink4 =
| last5 = Calvo | first5 = N. | authorlink5 =
| last6 = Martínez-Martínez | first6 = A. | authorlink6 =
| last7 = de Sevilla | first7 = T.F. | authorlink7 =
| last8 = Alegre | first8 = J. | authorlink8 = José Alegre
| title = Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study
| journal = Psychosomatics | volume = 58 | issue = 5 | page = 533 - 543
| date = 2017
| pmid =
| doi = 10.1016/j.psym.2017.04.010
}}
</ref>
<ref name="Sáez-Francàs, 2015">
{{Citation
| last1 = Sáez-Francàs | first1 = Naia | authorlink1 =
| last2 = Calvo | first2 = Natalia | authorlink2 =
| last3 = Alegre | first3 = José | authorlink3 = José Alegre
| last4 = Castro-Marrero | first4 = Jesús | authorlink4 = Jesús Castro-Marrero
| last5 = Casas | first5 = Miguel | authorlink5 =
| title = Childhood trauma in Chronic Fatigue Syndrome: focus on personality disorders and psychopathology
| journal = Comprehensive Psychiatry | volume = 62 | issue = | page = 13-19
| date = 2015
| pmid =
| doi = 10.1016/j.comppsych.2015.06.010
}}
</ref>

</references>

[[Category:Researchers]]
[[Category:Spain researchers]]
[[Category:Clinicians]]
[[Category:Spanish clinicians]]

Paralysis

2018-06-03T15:50:58Z

Suelala:add mention of hypo- & hyper-kalemic periodic paralysis, and sensory overstimulation

'''Paralysis''' in medical terms refers to the loss of muscle function and sensation in part or most of the body resulting from illness, injury, medication, or poison. It can be localized or generalized, partial or complete, and temporary or permanent.<ref>https://www.healthline.com/health/paralysis</ref>

==Presentation==

==Prevalence==
*In a 2001 Belgian study, 27.2% of patients meeting the [[Fukuda criteria]] and 33.2% of patients meeting the [[Holmes criteria]], in a cohort of 2073 [[CFS]] patients, reported paralysis.<ref name="symptoms2001" />

==Symptom recognition==

==Notable studies==

==Possible causes==

*There are known ion channel dysfunctions that can cause similar symptoms - eg [https://en.wikipedia.org/wiki/Hyperkalemic_periodic_paralysis Hyperkalemic periodic paralysis], [https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis Hypokalemic period paralysis], [https://en.wikipedia.org/wiki/Hypokalemic_sensory_overstimulation Hypokalemic sensory overstimulation].

==Potential treatments==

==Learn more==

==See also==
*[[Muscle fatigability]]

==References==
<references>

<ref name="symptoms2001">{{citation
| last1 = De Becker | first1 = P | authorlink1 = Pascale De Becker
| last2 = McGregor | first2 = N | authorlink2 = Neil McGregor
| last3 = De Meirleir | first3 = K | authorlink3 = Kenny de Meirleir
| title = A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome.
| journal = Journal of Internal Medicine | volume = 250 | issue = 3 | page = 234-240
| date = Sep 2001
| pmid = 11555128
| url = http://www.ncbi.nlm.nih.gov/pubmed/11555128
}}</ref>

</references>

[[Category:Signs and symptoms]]
[[Category:Muscular signs and symptoms]]

Donald Lewis

2018-06-01T16:11:43Z

Suelala:add radio interview

[[File:DonaldLewis.png|right]]

Dr '''Donald P. Lewis''' is a general practitioner specialising in ME/CFS working in Melbourne, [[Australia]]. He has been treating patients with ME/CFS, and researching the condition, since 1985.

==[[International Consensus Criteria]]==
Dr Lewis is one of the authors of the 2011 case definition, [[International Consensus Criteria]].<ref name="Carruthers, 2011"/>

==Books==
*2017, Chapter 31 - Sleep, Cognitive and Mood Symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, in ''The Handbook of Stress and Health: A Guide to Research and Practice''<ref name="Wallis, book, 2017"/>

==Notable studies==
*2018, Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection<ref name="Richardson, 2018"/>
*2018, Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons<ref name="Wallis, 2018"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5801817/ (Full Text)] [https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1413-y (Correction)]
*2017 - Examining clinical similarities between [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] and d-lactic acidosis: a systematic review<ref name="Wallis2017"/> [https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1229-1 (Full Text)]
*2017 - The association of fecal microbiota and fecal, blood serum and urine metabolites in [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]]<ref name="Armstrong, 2017"/>
*2016 - Widespread pain and altered renal function in [[ME/CFS]] patients<ref name="McGregor, 2016"/> [http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1207400?journalCode=rftg20 (Abstract)]
*2016 - Support for the [[Microgenderome]]: Associations in a Human Clinical Population<ref name="Wallis2016"/> [http://www.nature.com/articles/srep19171 (Full Text)]
* 2015 - Sleep quality and the treatment of intestinal microbiota imbalance in [[Chronic Fatigue Syndrome]]: A pilot study<ref name="Jackson2015"/> [http://www.sciencedirect.com/science/article/pii/S1984006315000632 (Full text)]
* 2015 - Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients<ref name="Armstrong, 2015"/>
* 2014 - Comorbidity of postural orthostatic tachycardia syndrome and chronic fatigue syndrome in an Australian cohort<ref name="Reynolds2014"/>
* 2009 - Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome<ref name="Sheedy2009"/>

==Clinic location==
Dr Lewis founded the [http://www.cfsdiscovery.com.au CFS Discovery] clinic, which is in Donvale, Melbourne.

==Talks and interviews==
* 2011 - Dr Don Lewis: Latest Understanding of ME/CFS (video)<ref name="Lewis2011Emerge"/>
* 01 Jun 2018 - Radio Interview - ABC Radio National (Australia) - Evenings with Christine Anu - [http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314 What do we know about Chronic Fatigue Syndrome]<ref name="LewisD20180601"/> with Dr [[Donald Lewis]] & Dr [[Mark Guthridge]] (from timestamp 1:34:40 to 1:54:45)

==Online presence==
*[http://www.cfsdiscovery.com.au Website]
*PubMed
*Twitter
*Facebook
*YouTube

==Learn more==
*Wikipedia
*Institution

==See also==

==References==
<references>



<ref name="Sheedy2009">{{citation
| last1 = Sheedy | first1 = John R | authorlink1 =
| last2 = Wettenhall | first2 = Richard EH | authorlink2 =
| last3 = Scanlon | first3 = Denis | authorlink3 =
| last4 = Gooley | first4 = Paul R | authorlink4 = Paul Gooley
| last5 = Lewis | first5 = Donald P | authorlink5 = Donald Lewis
| last6 = McGregor | first6 = Neil | authorlink6 = Neil McGregor
| last7 = Stapleton | first7 = David I | authorlink7 = David Stapleton
| last8 = Butt | first8 = Henry L | authorlink8 = Henry Butt
| last9 = De Meirleir | first9 = Kenny L | authorlink9 = Kenny de Meirleir
| display-authors =
| title = Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome
| journal = In Vivo | volume = 2009 Jul-Aug;23(4) | page = 621-8
| date = Jul 2009
| pmid = 19567398
| url = http://iv.iiarjournals.org/content/23/4/621.long
}}</ref>

<ref name="Lewis2011Emerge">{{citation
| last1 = Lewis | first1 = Donald P | authorlink1 = Donald Lewis
| title = Dr Don Lewis: Latest Understanding of ME/CFS (video)
| journal = Emerge Australia Seminar | location = Melbourne
| date = May 2011
| url = https://vimeo.com/107656181
}}</ref>

<ref name="Carruthers, 2011">
{{Citation
| last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers
| last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande
| last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir
| last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas
| last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick
| last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell
| last7 = Staines | first7 = D | authorlink7 = Donald Staines
| last8 = Powles | first8 = A C P | authorlink8 = A C Peter Powles
| last9 = Speight | first9 = N | authorlink9 = Nigel Speight
| last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings
| last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman
| last12 = Baumgarten-Austrheim| first12 = B | authorlink12 = Barbara Baumgarten-Austrheim
| last13 = Bell | first13 = DS | authorlink13 = David Bell
| last14 = Carlo-Stella | first14 = N | authorlink14 = Nicoletta Carlo-Stella
| last15 = Chia | first15 = J | authorlink15 = John Chia
| last16 = Darragh | first16 = A | authorlink16 = Austin Darragh
| last17 = Jo | first17 = D | authorlink17 = Daehyun Jo
| last18 = Lewis | first18 = D | authorlink18 = Donald Lewis
| last19 = Light | first19 = A | authorlink19 = Alan Light
| last20 = Marshall-Gradisnik | first20 = S | authorlink20 = Sonya Marshall-Gradisnik
| last21 = Mena | first21 = I | authorlink21 = Ismael Mena
| last22 = Mikovits | first22 = JA | authorlink22 = Judy Mikovits
| last23 = Miwa | first23 = K | authorlink23 = Kunihisa Miwa
| last24 = Murovska | first24 = M | authorlink24 = Modra Murovska
| last25 = Pall | first25 = ML | authorlink25 = Martin Pall
| last26 = Stevens | first26 = S | authorlink26 = Staci Stevens
| title = Myalgic encephalomyelitis: International Consensus Criteria.
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327-38
| date = 2011
| pmid = 21777306
| doi = 10.1111/j.1365-2796.2011.02428.x
}}
</ref>
<ref name="Reynolds2014">{{citation
| last1 = Reynolds | first1 = GK | authorlink1 =
| last2 = Lewis | first2 = Donald P | authorlink2 = Donald Lewis
| last3 = Richardson | first3 = AM | authorlink3 =
| last4 = Lidbury | first4 = Brett A | authorlink4 = Brett Lidbury
| display-authors =
| title = Comorbidity of postural orthostatic tachycardia syndrome and chronic fatigue syndrome in an Australian cohort
| journal = Journal of Internal Medicine | volume = Volume 275, Issue 4 | pages = 409–417
| date = April 2014
| pmid = 24206536 | doi = 10.1111/joim.12161
| url = http://onlinelibrary.wiley.com/doi/10.1111/joim.12161/abstract
}}</ref>
<ref name="Armstrong, 2015">
{{Citation
| last1 = Armstrong | first1 = Christopher W. | authorlink1 = Christopher Armstrong
| last2 = McGregor | first2 = Neil R. | authorlink2 = Neil McGregor
| last3 = Lewis | first3 = Donald P. | authorlink3 = Donald Lewis
| last4 = Butt | first4 = Henry L. | authorlink4 = Henry Butt
| last5 = Gooley | first5 = Paul R. | authorlink5 = Paul Gooley
| title = Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients
| journal = Metabolomics | volume = 11 | issue = 6 | page = 1626–1639
| date = 2015
| doi = 10.1007/s11306-015-0816-5
}}
</ref>
<ref name="Jackson2015">{{citation
| last1 = Jackson | first1 = Melinda L | authorlink1 = Melinda Jackson
| last2 = Butt | first2 = Henry L | authorlink2 = Henry Butt
| last3 = Ball | first3 = Michelle | authorlink3 =
| last4 = Lewis | first4 = Donald P | authorlink4 = Donald Lewis
| last5 = Bruck | first5 = Dorothy | authorlink5 = Dorothy Bruck
| display-authors =
| title = Sleep quality and the treatment of intestinal microbiota imbalance in Chronic Fatigue Syndrome: A pilot study
| journal = Sleep Science | volume = 2015 Nov;8(3) | page = 124-33
| date = 23 Oct 2015
| pmid = 26779319 | doi = 10.1016/j.slsci.2015.10.001
| url = http://www.sciencedirect.com/science/article/pii/S1984006315000632
}}</ref>
<ref name="Richardson, 2018">
{{Citation
| last1 = Richardson | first1 = Alice | authorlink1 =
| last2 = Lewis | first2 = Donald | authorlink2 = Donald Lewis
| last3 = Kita | first3 = Badia | authorlink3 =
| last4 = Ludlow | first4 = Helen | authorlink4 =
| last5 = Groome | first5 = Nigel | authorlink5 =
| last6 = Hedger | first6 = Mark | authorlink6 =
| last7 = de Kretser | first7 = David | authorlink7 =
| last8 = Lidbury | first8 = Brett | authorlink8 = Brett Lidbury
| title = Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection
| journal = Journal of Translational Medicine | volume = 16 | issue = | page = 97
| date = 2018
| pmid =
| doi = 10.1186/s12967-018-1473-z
}}</ref>
<ref name="Wallis2016">{{citation
| last1 = Wallis | first1 = Amy | authorlink1 = Amy Wallis
| last2 = Butt | first2 = Henry L | authorlink2 = Henry Butt
| last3 = Ball | first3 = Michelle | authorlink3 = Michelle Ball
| last4 = Lewis | first4 = Donald P | authorlink4 = Donald Lewis
| last5 = Bruck | first5 = Dorothy | authorlink5 = Dorothy Bruck
| display-authors =
| title = Support for the Microgenderome: Associations in a Human Clinical Population
| journal = Scientific Reports | volume = volume 6; article 19171
| date = 13 Jan 2016
| pmid = 26757840 | doi = 10.1038/srep19171
| url = http://www.nature.com/articles/srep19171
}}</ref>
<ref name="Wallis, book, 2017">{{citation
| last1 = Wallis | first1 = Amy | authorlink1 = Amy Wallis
| last2 = Jackson | first2 = Melinda L | authorlink2 = Melinda Jackson
| last3 = Ball | first3 = Michelle | authorlink3 = Michelle Ball
| last4 = Lewis | first4 = Donald | authorlink4 = Donald Lewis
| last5 = Bruck | first5 = Dorothy | authorlink5 = Dorothy Bruck
| title = Sleep, Cognitive and Mood Symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, in ''The Handbook of Stress and Health: A Guide to Research and Practice''
| date = 2017
| doi = 10.1002/9781118993811.ch31
}}</ref>
<ref name="McGregor, 2016">
{{Citation
| last1 = McGregor | first1 = Neil R. | authorlink1 = Neil McGregor
| last2 = Armstrong | first2 = Christopher W. | authorlink2 = Christopher Armstrong
| last3 = Lewis | first3 = Donald P. | authorlink3 = Donald Lewis
| last4 = Butt | first4 = Henry L. | authorlink4 = Henry Butt
| last5 = Gooley | first5 = Paul R. | authorlink5 = Paul Gooley
| title = Widespread pain and altered renal function in ME/CFS patients
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 3 | page = 132-145
| date = 2016
| doi = 10.1080/21641846.2016.1207400
}}
</ref>
<ref name="Wallis2017">{{citation
| last1 = Wallis | first1 = Amy | authorlink1 = Amy Wallis
| last2 = Ball | first2 = Michelle | authorlink2 = Michelle Ball
| last3 = McKechnie | first3 = Sandra | authorlink3 =
| last4 = Butt | first4 = Henry L | authorlink4 = Henry Butt
| last5 = Lewis | first5 = Donald P | authorlink5 = Donald Lewis
| last6 = Bruck | first6 = Dorothy | authorlink6 = Dorothy Bruck
| title = Examining clinical similarities between myalgic encephalomyelitis/chronic fatigue syndrome and d-lactic acidosis: a systematic review
| journal = Journal of Translational Medicine | volume = 2017 | issue = 15 | page = 129
| date = 2017
| doi = 10.1186/s12967-017-1229-1
}}</ref>
<ref name="Armstrong, 2017">
{{Citation
| last1 = Armstrong | first1 = Christopher W. | authorlink1 = Christopher Armstrong
| last2 = McGregor | first2 = Neil R. | authorlink2 = Neil McGregor
| last3 = Lewis | first3 = Donald P. | authorlink3 = Donald Lewis
| last4 = Butt | first4 = Henry L. | authorlink4 = Henry Butt
| last5 = Gooley | first5 = Paul R. | authorlink5 = Paul Gooley
| title = The association of fecal microbiota and fecal, blood serum and urine metabolites in myalgic encephalomyelitis/chronic fatigue syndrome
| journal = Metabolomics | volume = 13 | issue = 1 | page =
| date = 2017
| doi = 10.1007/s11306-016-1145-z
}}
</ref>
<ref name="Wallis, 2018">{{citation
| last1 = Wallis | first1 = Amy | authorlink1 = Amy Wallis
| last2 = Ball | first2 = Michelle | authorlink2 = Michelle Ball
| last3 = Butt | first3 = Henry L | authorlink3 = Henry Butt
| last4 = Lewis | first4 = Donald P | authorlink4 = Donald Lewis
| last5 = McKechnie | first5 = Sandra | authorlink5 =
| last6 = Paull | first6 = Phillip | authorlink6 =
| last7 = Jaa-Kwee | first7 = Amber | authorlink7 =
| last8 = Bruck | first8 = Dorothy | authorlink8 = Dorothy Bruck
| title = Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons
| journal = Journal of Translational Medicine | volume = 16 | issue = 1 | page = 24
| date = 2018
| doi = 10.1186/s12967-018-1392-z
}}</ref>

<ref name="LewisD20180601">{{citation
| last1 = Lewis | first1 = Donald P | authorlink1 = Donald Lewis
| last2 = Guthridge | first2 = Mark | authorlink2 = Mark Guthridge
| title = What Do We Know About Chronic Fatigue Syndrome ?
| journal = ABC Radio National (Australia) - Evenings with Christine Anu
| date = 1 Jun 2018
| url = http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314
}}</ref>

</references>

[[Category:Researchers]]
[[Category:Australia researchers]]
[[Category:Clinicians]]
[[Category:Australian clinicians]]

Mark Guthridge

2018-06-01T16:07:42Z

Suelala:add link to radio intervidew

{{stub}}
Dr '''Mark Guthridge''' is a senior research fellow for the Australian Centre for Blood Diseases at Monash University<ref name="GuthridgeM20180528b"/>, with an interest in ME/cfs, immunology, metabolism, hematology, cancer research, cytokines.

==Articles, talks & interviews==
* 01 Jun 2018 - Radio Interview - ABC Radio National (Australia) - Evenings with Christine Anu - [http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314 What do we know about Chronic Fatigue Syndrome]<ref name="GuthridgeM20180601"/> with Dr [[Donald Lewis]] & Dr [[Mark Guthridge]] (from timestamp 1:34:40 to 1:54:45)

* 28 May 2018 - Radio Interview - ABC Sydney - [http://www.abc.net.au/radio/sydney/programs/breakfast/cfs-edit/9807668 How much do you know about Chronic Fatigue Syndrome?] <ref name="GuthridgeM20180528b"/>

* 28 May 2018 - Radio Interview - 2SER Sydney - [https://2ser.com/chronic-fatigue-syndrome-a-misunderstood-illness/ Chronic Fatigue Syndrome: A Misunderstood Illness] <ref name="GuthridgeM20180528a"/>

* 24 May 2018 - Written Article - The Conversation - [https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 What causes chronic fatigue? What we know, don’t know and suspect] <ref name="GuthridgeM20180524"/>
** [https://player.fm/series/most-viral-science-news/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect via podcast]
** [https://www.sciencealert.com/here-s-what-science-knows-so-far-on-the-causes-of-chronic-fatigue-syndrome via Science Alert]
** [http://www.businesses.com.au/general-business/428075-what-causes-chronic-fatigue-what-we-know-don%E2%80%99t-know-and-suspect via Business Daily]

==Online presence==
* [https://twitter.com/dr_m_guthridge Twitter]

==Learn more==
*

==See also==
*

==References==
<references>

<ref name="GuthridgeM20180524">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = What causes chronic fatigue? What we know, don’t know and suspect
| journal = The Conversation (Australia)
| date = 24 May 2018
| url = https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395
}}</ref>
<ref name="GuthridgeM20180528b">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = How much do you know about Chronic Fatigue Syndrome?
| journal = ABC Radio Sydney (Australia) - Breakfast Show
| date = 28 May 2018
| url = http://www.abc.net.au/radio/sydney/programs/breakfast/cfs-edit/9807668
}}</ref>
<ref name="GuthridgeM20180528a">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = Chronic Fatigue Syndrome: A Misunderstood Illness
| journal = 2SER Radio Sydney (Australia) - Health, science & tech
| date = 28 May 2018
| url = https://2ser.com/chronic-fatigue-syndrome-a-misunderstood-illness/
}}</ref>

<ref name="GuthridgeM20180601">{{citation
| last1 = Lewis | first1 = Donald P | authorlink1 = Donald Lewis
| last2 = Guthridge | first2 = Mark | authorlink2 = Mark Guthridge
| title = What Do We Know About Chronic Fatigue Syndrome ?
| journal = ABC Radio National (Australia) - Evenings with Christine Anu
| date = 1 Jun 2018
| url = http://www.abc.net.au/radio/programs/nationalevenings/evenings/9802314
}}</ref>

</references>

[[Category:Advocates or allies]][[Category:Australian advocates or allies]]

ASSSEMBiomédics

2018-05-30T17:06:41Z

Suelala:fix category name

Doctors specialized in Fibromyalgia, Chronic Fatigue Syndrome / MS, Multiple chemical sensitivity and Electrohypersensitivity. With José Luis Rivas at the helm, they have published a pioneering study that opens the doors to the development of a definitive biomarker for CFS / ME

==Notable studies==

* 2018 - Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)<ref name="RivasJL2018" />

==Talks and interviews==

* 2018 - [http://www.infosalus.com/asistencia/noticia-desarrollan-modelo-diagnosticar-sindrome-fatiga-cronica-70-casos-20180529192544.html They develop a model to diagnose chronic fatigue syndrome in 70% of cases]

==Online presence==

* http://asssembiomedics.com/
* https://www.facebook.com/AsssemBiomedics/

==Learn more==

==See also==

* [[Jose Luis Rivas]]
* [[Teresa Palencia]]
* [[Guerau Fernández]]
* [[Milagros García]]

==References==

<references>
<ref name="RivasJL2018">{{Citation
| last1 = Rivas | first1 = Jose Luis | authorlink1 = Jose L Rivas
| last2 = Palencia | first2 = Teresa | authorlink2 = Teresa Palencia
| last3 = Fernández | first3 = Guerau | authorlink3 = Guerau Fernández
| last4 = García | first4 = Milagros | authorlink4 = Milagros García
| title = Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
| journal = Frontiers in Immunology | volume = 9 | issue = 2018
| date = 9 May 2018
| doi = 10.3389/fimmu.2018.01028
}}</ref>

</references>

[[Category:Researchers]]
[[Category:Spain researchers]]

ASSSEMBiomédics

2018-05-30T16:52:45Z

Suelala:add detail for online article

Doctors specialized in Fibromyalgia, Chronic Fatigue Syndrome / MS, Multiple chemical sensitivity and Electrohypersensitivity. With José Luis Rivas at the helm, they have published a pioneering study that opens the doors to the development of a definitive biomarker for CFS / ME

==Notable studies==

* 2018 - Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)<ref name="RivasJL2018" />

==Talks and interviews==

* 2018 - [http://www.infosalus.com/asistencia/noticia-desarrollan-modelo-diagnosticar-sindrome-fatiga-cronica-70-casos-20180529192544.html They develop a model to diagnose chronic fatigue syndrome in 70% of cases]

==Online presence==

* http://asssembiomedics.com/
* https://www.facebook.com/AsssemBiomedics/?ref=br_rs

==Learn more==

==See also==

* [[Jose Luis Rivas]]
* [[Teresa Palencia]]
* [[Guerau Fernández]]
* [[Milagros García]]

==References==

<references>
<ref name="RivasJL2018">{{Citation
| last1 = Rivas | first1 = Jose Luis | authorlink1 = Jose L Rivas
| last2 = Palencia | first2 = Teresa | authorlink2 = Teresa Palencia
| last3 = Fernández | first3 = Guerau | authorlink3 = Guerau Fernández
| last4 = García | first4 = Milagros | authorlink4 = Milagros García
| title = Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
| journal = Frontiers in Immunology | volume = 9 | issue = 2018
| date = 9 May 2018
| doi = 10.3389/fimmu.2018.01028
}}</ref>

</references>

[[Category:Researchers]]
[[Category:Spanish researchers]]

ASSSEMBiomédics

2018-05-30T11:32:30Z

Suelala:fix minor error in citation

'''ASSEMBiomed''' is

==Notable studies==
* 2018 - Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)<ref name="RivasJL2018"/>

==Talks and interviews==
*

==Online presence==
* Twitter
* Research Gate

==Learn more==

==See also==
* [[Jose Luis Rivas]]
* [[Teresa Palencia]]
* [[Guerau Fernández]]
* [[Milagros García]]

==References==

<references>
<ref name="RivasJL2018">{{Citation
| last1 = Rivas | first1 = Jose Luis | authorlink1 = Jose L Rivas
| last2 = Palencia | first2 = Teresa | authorlink2 = Teresa Palencia
| last3 = Fernández | first3 = Guerau | authorlink3 = Guerau Fernández
| last4 = García | first4 = Milagros | authorlink4 = Milagros García
| title = Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
| journal = Frontiers in Immunology | volume = 9 | issue = 2018
| date = 9 May 2018
| doi = 10.3389/fimmu.2018.01028
}}</ref>
</references>

[[Category:Researchers]]
[[Category:Spanish researchers]]

ASSSEMBiomédics

2018-05-30T11:12:33Z

Suelala:add headings links & reference

'''ASSEMBiomed''' is

==Notable studies==
* <ref name="RivasJL2018"/>

==Talks and interviews==
*

==Online presence==
* Twitter
* Research Gate

==Learn more==

==See also==
* [[Jose Luis Rivas]]
* [[Teresa Palencia]]
* [[Guerau Fernández]]
* [[Milagros García]]

==References==

<references>
<ref name="RivasJL2018">{{Citation
| last1 = Rivas | first1 = Jose Luis | authorlink1 = Jose L Rivas
| last2 = Palencia | first2 = Teresa | authorlink2 = Teresa Palencia
| last3 = Fernández | first3 = Guerau | authorlink3 = Guerau Fernández
| last4 = García | first4 = Milagros | authorlink4 = Milagros García
| title = Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
| journal = Frontiers in Immunology | volume = 9 | issue = 2018
| date = 9 May 2018
| doi = 10.3389/fimmu.2018.01028
}}</ref>
�</references>

[[Category:Researchers]]
[[Category:Spanish researchers]]

ASSSEMBIOMEDICS

2018-05-30T11:07:19Z

Suelala:Suelala moved page ASSSEMBIOMEDICS to ASSSEMBiomédics: correction to page name

#REDIRECT [[ASSSEMBiomédics]]

ASSSEMBiomédics

2018-05-30T11:07:18Z

Suelala:Suelala moved page ASSSEMBIOMEDICS to ASSSEMBiomédics: correction to page name

Mark Guthridge

2018-05-28T08:55:22Z

Suelala:add link

Mark Guthridge

2018-05-28T06:33:53Z

Suelala:update links to radio interviews

Jamison Hill

2018-05-27T16:35:45Z

Suelala:added link to NYT article, reformat references

'''Jamison Graham Hill''' is an author and, prior to becoming stricken with severe [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] (ME/CFS), a bodybuilder and certified personal trainer. He is featured in the 2015 documentary, ''[[Forgotten Plague]]'', by [[Ryan Prior]] and [[Nicole Castillo]]. In addition to writing a book on fitness, he has written articles for ''Ultra-FIT'', ''Physique Magazine'', ''ExtraFit Magazine'', ''World Physique Magazine'', and ''Inside Fitness.''<ref name="HillJamBlog-Bio"/>

Hill first became ill with [[ME]] in 2010 following a case of mononucleosis in his senior year of college at Sonoma State.<ref>https://www.gofundme.com/z72amn3c</ref> His health gradually declined until he was bedridden and unable to speak or eat solid food. Slowly, his health is now improving.<ref name="HillJamBlog-Bio"/>

Hill's blog, [https://jamisonwrites.com/ Jamison Writes] began as a fitness blog. After a three and a half year hiatus due to illness, Hill is continuing his blog, now writing about his experiences as a patient with ME. He states: "This site is dedicated to Jamison’s journey to regain his health and help others realize the seriousness of his disease and the devastation it causes."<ref name="HillJamBlog-Bio"/>

==Articles and op-eds==
*May 25, 2018 - [https://www.nytimes.com/2018/05/25/style/modern-love-means-never-having-to-say-anything.html "Love Means Never Having to Say … Anything"] in the ''New York Times''<ref name="HillJam20180525"/>
*June 21, 2017 - [https://mic.com/articles/180369/as-a-disabled-person-siri-changed-my-life-then-i-lost-the-ability-to-speak#.XhM8RZ5tQ "I'm a disabled person, and Siri changed my life. Then I lost the ability to speak."] in ''Mic''<ref name="HillJam20170621"/>
*April 24, 2017 - [http://www.latimes.com/opinion/op-ed/la-oe-hill-smartphone-addiction-disability-20170424-story.html "I'm not 'addicted' to my smartphone. I depend on it to survive"] in the ''Los Angeles Times''<ref name="HillJam20170424"/>
*Feb 10, 2017 - "Dear anti-Trump protesters: don’t forget those of us with disabilities" : <blockquote>"Between 3 million and 5 million people took to the streets as part of the Women's March the day after Donald Trump's inauguration. And on January 28 and 29, thousands of people descended on airports throughout the nation to protest Trump's 'Muslim ban'. I was not one of the protesters. I have myalgic encephalomyelitis (or chronic fatigue syndrome), a disease that has left me bedridden and unable to speak full sentences for the past two years, more than a year of which I was unable to eat, tolerate light, elevate my head, or laterally move my limbs. I am one of the disabled who cannot march. I can't even attend a demonstration in a wheelchair..."<ref name="HillJam20170210"/></blockquote>

==Publications==
*2012, [https://www.amazon.com/Optimal-Balance-Plan-Transform-Sustainable/dp/1105273261 The Optimal Balance Plan: Transform Your Body, Find Sustainable Fitness, Improve Your Life]

==Online Presence==
*[https://jamisonwrites.com/ Blog - Jamison Writes]
*[https://twitter.com/NotTheWhiskey?lang=en Twitter]
*[http://www.jamisonfit.com/ Fitness training website]
*[https://www.youtube.com/channel/UCe3qylXQQMM0hGcyUlJJq1g YouTube]

==Learn more==
*[http://theblueribbonfoundation.org/2016/07/29/share-your-story-jamison-hill/ The Blue Ribbon Foundation, Share your Story: Jamison Hill]
*[https://www.teezily.com/mecfs Support Jamison Hill and ME/CFS Awareness]

==See also==
*[[Forgotten Plague]]
*November 17, 2016, [https://stepville.com/2016/11/17/sometimes-you-go-to-california/ ''Sometimes You Go To California'' - blog post by Stephanie Land about visiting Jamison Hill]

==References==
<references>

<ref name="HillJamBlog-Bio">{{citation
| title = Jamison Writes (blog)
| url = https://jamisonwrites.com/about-me/
}}</ref>

<ref name="HillJam20170210">{{citation
| last1 = Hill | first1 = Jamison Graham | authorlink1 = Jamison Hill
| title = Dear anti-Trump protesters: don’t forget those of us with disabilities
| newspaper = VOX | location = Washington, DC and New York, NY (USA)
| date = 10 Feb 2017
| url = http://www.vox.com/first-person/2017/2/10/14567112/trump-protest-disabilities-inclusivity
}}</ref>

<ref name="HillJam20170424">{{citation
| last1 = Hill | first1 = Jamison Graham | authorlink1 = Jamison Hill
| title = I'm not 'addicted' to my smartphone. I depend on it to survive
| journal = Los Angeles Times (USA)
| date = 24 Apr 2017
| url = http://www.latimes.com/opinion/op-ed/la-oe-hill-smartphone-addiction-disability-20170424-story.html
}}</ref>

<ref name="HillJam20170621">{{citation
| last1 = Hill | first1 = Jamison Graham | authorlink1 = Jamison Hill
| title = I'm a disabled person, and Siri changed my life. Then I lost the ability to speak.
| journal = Mic Network (USA)
| date = 21 Jun 2017
| url = https://mic.com/articles/180369/as-a-disabled-person-siri-changed-my-life-then-i-lost-the-ability-to-speak
}}</ref>

<ref name="HillJam20180525">{{citation
| last1 = Hill | first1 = Jamison Graham | authorlink1 = Jamison Hill
| title = Love Means Never Having to Say … Anything
| journal = The New York Times
| date = 25 May 2018
| url = https://www.nytimes.com/2018/05/25/style/modern-love-means-never-having-to-say-anything.html
}}</ref>

</references>

[[Category:People with ME, CFS, and/or FMS]]
[[Category:Authors]]
[[Category:Journalists]]
[[Category:Advocates or allies]]
[[Category:American advocates or allies]]

Mark Guthridge

2018-05-27T14:51:48Z

Suelala:add new links

{{stub}}
Dr '''Mark Guthridge''' is a Research Scientist (PhD) examining immunology, metabolism, hematology, cancer research, #cytokines, and ME/cfs.

==Articles, talks & interviews==
* 24 May 2018 - Written Article - [https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 What causes chronic fatigue? What we know, don’t know and suspect] <ref name="GuthridgeM20180524"/>
** [https://player.fm/series/most-viral-science-news/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect podcast]
** [https://www.sciencealert.com/here-s-what-science-knows-so-far-on-the-causes-of-chronic-fatigue-syndrome via Science Alert]

* 28 May 2018 - Radio Interview - Breakfast Program, Sydney ABC 702

==Online presence==
* [https://twitter.com/dr_m_guthridge Twitter]

==Learn more==
*

==See also==
*

==References==
<references>

<ref name="GuthridgeM20180524">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = What causes chronic fatigue? What we know, don’t know and suspect
| journal = The Conversation (Australia)
| date = 24 May 2018
| url = https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395
}}</ref>

</references>

[[Category:Advocates or allies]][[Category:Australian advocates or allies]]

Mark Guthridge

2018-05-27T14:40:57Z

Suelala:added links

{{stub}}
Dr '''Mark Guthridge''' is a Research Scientist (PhD) examining immunology, metabolism, hematology, cancer research, #cytokines, and ME/cfs.

==Articles, talks & interviews==
* 24 May 2018 - [https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 What causes chronic fatigue? What we know, don’t know and suspect] <ref name="GuthridgeM20180524"/>
** [https://player.fm/series/most-viral-science-news/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect podcast]
** [https://www.sciencealert.com/here-s-what-science-knows-so-far-on-the-causes-of-chronic-fatigue-syndrome via Science Alert]

==Online presence==
* [https://twitter.com/dr_m_guthridge Twitter]

==Learn more==
*

==See also==
*

==References==
<references>

<ref name="GuthridgeM20180524">{{citation
| last1 = Guthridge | first1 = Mark | authorlink1 = Mark Guthridge
| title = What causes chronic fatigue? What we know, don’t know and suspect
| journal = The Conversation (Australia)
| date = 24 May 2018
| url = https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395
}}</ref>

</references>

[[Category:Advocates or allies]][[Category:Australian advocates or allies]]

Mark Guthridge

2018-05-27T14:23:41Z

Suelala:create new page

Dr '''Mark Guthridge''' is a Research Scientist (PhD) examining immunology, metabolism, hematology, cancer research, #cytokines, and ME/cfs.

==Articles, talks & interviews==
* 25 May 2018 - [https://www.sciencealert.com/here-s-what-science-knows-so-far-on-the-causes-of-chronic-fatigue-syndrome Here's What Science Knows So Far on The Causes of Chronic Fatigue Syndrome - It's much more than just "being tired".]

==Online presence==
* [https://twitter.com/dr_m_guthridge Twitter]

==Learn more==
*

==See also==

==References==
<references>

</references>

[[Category:Advocates or allies]][[Category:Australian advocates or allies]]
[stub]

Pacing with a heart rate monitor

2018-05-23T17:10:04Z

Suelala:marked this page as a stub

==Theory==

People with Myalgic Encephalomyelitis have dysfunctional mitochondria<ref name="THE1" />. This limits their ability to generate cellular energy. Doing activities that exceed available energy, usually triggers a flood of cytokines, and other negative affects, known as [[post exertional malaise]].<ref name="THE2" />

Some researchers believe that each time PEM is triggered, it is reactivating the disease process of ME.<ref name="THE3" />

Using a heart rate monitor, to measure heart rate, heart rate variability, and other factors, allows people with ME to observe their energy usage, and learn how to stay within their safe limits.<ref name="THE4" />

This pacing method is often used in conjunction with other treatments (electrolyte loading, pharmaceuticals to assist blood volume & cardiovascular function, extreme resting and meditation, etc).<ref name="THE5" />

==Evidence==

Anecdotally, some people experience gradual improvements in their health, with occasional setbacks due to over-exertion, infections & immune reactivity.<ref name="EVI1" />

==Clinicians==

* [[Workwell Foundation]]

==Risks and Safety==

==Costs and Availability==

==Notable studies==

==Examples==

==Learn More==

* Workwell Foundation - [http://www.workwellfoundation.org/sample-page/ Videos & Publications]
* Leela Play - [https://www.facebook.com/notes/leela-play/intro-to-pacing-using-a-heart-rate-monitor-for-me-patients/1502884386402097/ Intro to pacing using a heart rate monitor for ME patients]
* CFIDS & Fibromyalgia Self-Help - [http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope]
* Sally Burch 'Just ME' blog - [http://sallyjustme.blogspot.com.au/2015/12/startingHRmonitoring.html Starting Heart Rate Monitoring for ME]
* Health Rising - [https://www.healthrising.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/ Heart Rate Monitor Based Exercise Program Improves Heart Functioning in ME/CFS]
* Sue Jackson 'Living with ME/cfs' blog - [http://livewithcfs.blogspot.com.au/2011/02/heart-rate-and-post-exertional-crashes.html Heart Rate and post-exertional crashes]
* Clark Ellis 'Autodidact' blog - [https://autodidactauthor.wordpress.com/2017/12/18/which-heart-rate-monitor-for-me-cfs/ Which heart rate monitor for ME/CFS?]

==See also==

* [[Activity management based on 2-day cardiopulmonary exercise testing results]]
* [[Energy Envelope Theory]]
* [[Pacing]]

==References==
<references>
<ref name="THE1">reference needed</ref>
<ref name="THE2">reference needed</ref>
<ref name="THE3">reference needed</ref>
<ref name="THE4">reference needed</ref>
<ref name="THE5">reference needed</ref>
<ref name="EVI1">reference needed</ref>
</references>

[[Category:Potential treatments]]
[[Category:Management strategies]]
[[Category:Stubs]]

Pacing with a heart rate monitor

2018-05-23T11:43:27Z

Suelala:added links to blogs & related topics

==Theory==

People with Myalgic Encephalomyelitis have dysfunctional mitochondria<ref name="THE1"/>. This limits their ability to generate cellular energy. Doing activities that exceed available energy, usually triggers a flood of cytokines, and other negative affects, known as [[post exertional malaise]].<ref name="THE2"/>

Some researchers believe that each time PEM is triggered, it is reactivating the disease process of ME.<ref name="THE3"/>

Using a heart rate monitor, to measure heart rate, heart rate variability, and other factors, allows people with ME to observe their energy usage, and learn how to stay within their safe limits.<ref name="THE4"/>

This pacing method is often used in conjunction with other treatments (electrolyte loading, pharmaceuticals to assist blood volume & cardiovascular function, extreme resting and meditation, etc).<ref name="THE5"/>

==Evidence==

Anecdotally, some people experience gradual improvements in their health, with occasional setbacks due to over-exertion, infections & immune reactivity.<ref name="EVI1"/>

==Clinicians==
* [[Workwell Foundation]]

==Risks and Safety==

==Costs and Availability==

==Notable studies==

==Examples==

==Learn More==
* Workwell Foundation - [http://www.workwellfoundation.org/sample-page/ Videos & Publications]
* Leela Play - [https://www.facebook.com/notes/leela-play/intro-to-pacing-using-a-heart-rate-monitor-for-me-patients/1502884386402097/ Intro to pacing using a heart rate monitor for ME patients]
* CFIDS & Fibromyalgia Self-Help - [http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope]
* Sally Burch 'Just ME' blog - [http://sallyjustme.blogspot.com.au/2015/12/startingHRmonitoring.html Starting Heart Rate Monitoring for ME]
* Health Rising - [https://www.healthrising.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/ Heart Rate Monitor Based Exercise Program Improves Heart Functioning in ME/CFS]
* Sue Jackson 'Living with ME/cfs' blog - [http://livewithcfs.blogspot.com.au/2011/02/heart-rate-and-post-exertional-crashes.html Heart Rate and post-exertional crashes]
* Clark Ellis 'Autodidact' blog - [https://autodidactauthor.wordpress.com/2017/12/18/which-heart-rate-monitor-for-me-cfs/ Which heart rate monitor for ME/CFS?]

==See also==
* [[Activity management based on 2-day cardiopulmonary exercise testing results]]
* [[Energy Envelope Theory]]
* [[Pacing]]

==References==
<references>

<ref name="THE1">reference needed</ref>
<ref name="THE2">reference needed</ref>
<ref name="THE3">reference needed</ref>
<ref name="THE4">reference needed</ref>
<ref name="THE5">reference needed</ref>

<ref name="EVI1">reference needed</ref>

</references>

[[Category:Potential treatments]]
[[Category:Management strategies]]

Pacing with a heart rate monitor

2018-05-23T09:08:41Z

Suelala:add basic theory

Glossary

2018-05-22T00:38:45Z

Suelala:added heart rate monitor, heart rate variability

A glossary of ME-related terminology

== 1-10 ==

== A ==

== B ==

== C ==

== D ==

== E ==

== F ==

== G ==

== H ==
Heart rate monitor (HRM) - (noun) a device that measures your heart rate / pulse. Typically a chest strap, wrist strap, or mobile phone app. See also [[Pacing with a heart rate monitor]]

Heart rate variability (HRV) - a measurement of the specific changes in time (or variability) between successive heart beats. This is related to autonomic and cardiovascular function. See also [[Pacing with a heart rate monitor]]

== I ==

== J ==

== K ==

== L ==

== M ==

== N ==

== O ==

== P ==
[[post-exertional malaise]] (PEM)- (noun) a worsening of ME symptoms due to physical or cognitive exertion

[[post-exertional neuroimmune exhaustion]] -- see post-exertional malaise

== Q ==

== R ==

== S ==

== T ==

== U ==

== V ==

== W ==

== X ==

== Y ==

== Z ==

Pacing with a heart rate monitor

2018-05-22T00:06:52Z

Suelala:create new page

==Theory==

==Evidence==

==Clinicians==

==Risks and Safety==

==Costs and Availability==

==Notable studies==

==Examples==

==Learn More==

==See also==
*[[topic]]

==References==
<references>

</references>

[[Category:Potential treatments]]
[[Category:Management strategies]]

Carolyn Wilshire

2018-03-29T18:06:48Z

Suelala:minor changes to citations

[[File:Carolyn Wilshire .png|200px|thumb|right|ResearchGate]]
'''Carolyn Wilshire''', PhD., is a Senior Lecturer at Victoria University of Wellington, School of Psychology, Wellington, New Zealand. She specializes in Language, Aphasia, Cognitive Psychology, Neuropsychology, Cognitive Neuroscience.

==Education==
*PhD - University of Cambridge
*BSc - (Hons) Monash University

==Notable studies/articles on ME/CFS==
*2018, Rethinking the treatment of [[chronic fatigue syndrome]] — A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT<ref name="Wilshire, 2018"/> [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT (Full Text)]
*2017, The problem of bias in behavioural intervention studies: Lessons from the [[PACE trial]]<ref name="Wilshire, 2017"/> [https://www.researchgate.net/profile/Carolyn_Wilshire/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial/links/58d4b6fd92851c44d4416c14/The-problem-of-bias-in-behavioural-intervention-studies-Lessons-from-the-PACE-trial.pdf (Abstract - Full text available on request)]
*2017, Can patients with [[chronic fatigue syndrome]] really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the [[PACE trial]]<ref name="Wilshire,et al, 2017"/> [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724 (Abstract)]
*2017, [[PACE trial]] claims of recovery are not justified by the data: a rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)<ref name="Wilshire C, et al, 2017"/> [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1299358 (Abstract)]
*2015, Psychogenic explanations of physical illness: Time to examine the evidence<ref name="Wilshire, 2015"/> [https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence (Full Text)]

==Talks & interviews==

==Online presence==
*[https://scholar.google.com/citations?user=Cs7ZDbEAAAAJ Google Scholar]
*[https://www.researchgate.net/profile/Carolyn_Wilshire ResearchGate]
*[https://twitter.com/wilshica?lang=en Twitter]
*[https://aeon.co/users/carolyn-wilshire Aeon]

==Learn more==
*[http://www.victoria.ac.nz/psyc/about/staff/carolyn-wilshire Victoria University of Wellington Staff Bio page]

==See also==

==References==
<references>
<ref name="Wilshire, 2015">
{{Citation
| last1 = Wilshire | first1 = Carolyn | authorlink1 = Carolyn Wilshire
| last2 = Ward | first2 = Tony | authorlink2 =
| title = Psychogenic explanations of physical illness: Time to examine the evidence
| journal = Psychological Science | volume = 11 | issue = 5 | page = 606–631
| date = 2015
| doi = 10.13140/RG.2.1.1344.7125
}}
</ref>
<ref name="Wilshire, 2017">
{{Citation
| last1 = Wilshire | first1 = Carolyn | authorlink1 = Carolyn Wilshire
| title = The problem of bias in behavioural intervention studies: Lessons from the PACE trial
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page =
| date = 2017
| doi = 10.1177/1359105317700885
}}
</ref>
<ref name="Wilshire C, et al, 2017">
{{Citation
| last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire
| last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon
| last3 = McGrath | first3 = S | authorlink3 = Simon McGrath
| title = PACE trial claims of recovery are not justified by the data: a rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 62-67
| date = 2017
| doi = 10.1080/21641846.2017.1259724
}}
</ref>
<ref name="Wilshire,et al, 2017">
{{Citation
| last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire
| last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon
| last3 = Matthees | first3 = A | authorlink3 = Alem Matthees
| last4 = McGrath | first4 = S | authorlink4 = Simon McGrath
| title = Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 43-56
| date = 2017
| doi = 10.1080/21641846.2017.1259724
}}
</ref>
<ref name="Wilshire, 2018">
{{Citation
| last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire
| last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon
| last3 = Courtney | first3 = R | authorlink3 = Robert Courtney
| last4 = Matthees | first4 = A | authorlink4 = Alem Matthees
| last5 = Tuller | first5 = D | authorlink5 = David Tuller
| last6 = Geraghty | first6 = K | authorlink6 = Keith Geraghty
| last7 = Levin | first7 = B | authorlink7 = Bruce Levin
| title = Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
| journal = BMC Psychology | volume = 6 | issue = 6 | page =
| date = 2018
| doi = 10.1186/s40359-018-0218-3
| url = https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT
}}
</ref>
</references>

[[Category:Researchers]]
[[Category:New Zealand researchers]]

PACE trial

2018-03-28T13:30:23Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/><ref name="SwissRe2011b"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/><ref name="SwissRe2011b"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”<ref name="MEAction20160514"/>

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity.<ref name="openletrIMET"/>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: an open letter from two Belgian patient organisations, ME-Gids and WUCB.<ref name="openletrBelg"/>
*2016: an open letter from a Dutch patient group, Groep ME-DenHaag / The Dutch Citizen’s Initiative for ME patients<ref name="openletrNeth1"/> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref name="openletrNeth2"/>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake .. the inevitable conclusion is that they have something to hide."<ref name="SmithR20151216"/> and in article for F1000 Research.<ref name="SmithR20160429"/>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released'.<ref name="MEASSUK201603poll"/>

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]].<ref name="WSJ20160307"/><ref name="MEASSUK201603WSJ"/>

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrIMET">{{citation
| author = Irish ME Trust | authorlink1 = Irish ME Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 22 Feb 2016
| url = https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf
}}</ref>
<ref name="openletrNeth1">{{citation
| author = Groep ME Den-Haag
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 24 Feb 2016
| url = https://www.facebook.com/GroepMEDenHaag/posts/678816975555397
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>
<ref name="openletrBelg">{{citation
| last1 = Wake Up Call Beweging (WUCB)
| last2 = ME-gids
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrNeth2">{{citation
| last1 = ME/cvs Vereniging
| last2 = ME/CVS Stichting Nederland
| last3 = Steungroep ME en Arbeidsongeschiktheid
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 15 Mar 2016
| url = http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf }}</ref>
<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEAction20160514">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Racianello: PACE Obfuscation will continue “until we are all dead”
| journal = #MEAction
| date = 14 May 2016
| url = http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>
<ref name="MEASSUK201603WSJ">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Patients, Scientists Fight Over Research-Data Access (Wall Street Journal)
| date = 7 Mar 2016
| url = http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/
}}</ref>
<ref name="MEASSUK201603poll">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = PACE Trial data release : Our March website poll gathers 1,322 votes so far
| date = 16 Mar 2016
| url = http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ }}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="SmithR20160429">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| last2 = Roberts | first2 = Ian | authorlink2 = Ian Roberts
| title = Time for sharing data to become routine: the seven excuses for not doing so are all invalid
| journal = F1000Research | volume = 2016 | issue = 5 | page = 781
| date = 29 Apr 2016
| url = http://f1000research.com/articles/5-781/v1
| doi = 10.12688/f1000research.8422.1
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| type = image
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>
<ref name="SwissRe2011b">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| type = webpage
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://web.archive.org/web/20130824093822/http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-date = 24 Aug 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2018-03-28T12:08:20Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”<ref name="MEAction20160514"/>

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity.<ref name="openletrIMET"/>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: an open letter from two Belgian patient organisations, ME-Gids and WUCB.<ref name="openletrBelg"/>
*2016: an open letter from a Dutch patient group, Groep ME-DenHaag / The Dutch Citizen’s Initiative for ME patients<ref name="openletrNeth1"/> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref name="openletrNeth2"/>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake .. the inevitable conclusion is that they have something to hide."<ref name="SmithR20151216"/> and in article for F1000 Research.<ref name="SmithR20160429"/>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released'.<ref name="MEASSUK201603poll"/>

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]].<ref name="WSJ20160307"/><ref name="MEASSUK201603WSJ"/>

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrIMET">{{citation
| author = Irish ME Trust | authorlink1 = Irish ME Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 22 Feb 2016
| url = https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf
}}</ref>
<ref name="openletrNeth1">{{citation
| author = Groep ME Den-Haag
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 24 Feb 2016
| url = https://www.facebook.com/GroepMEDenHaag/posts/678816975555397
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>
<ref name="openletrBelg">{{citation
| last1 = Wake Up Call Beweging (WUCB)
| last2 = ME-gids
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrNeth2">{{citation
| last1 = ME/cvs Vereniging
| last2 = ME/CVS Stichting Nederland
| last3 = Steungroep ME en Arbeidsongeschiktheid
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 15 Mar 2016
| url = http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf }}</ref>
<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEAction20160514">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Racianello: PACE Obfuscation will continue “until we are all dead”
| journal = #MEAction
| date = 14 May 2016
| url = http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>
<ref name="MEASSUK201603WSJ">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Patients, Scientists Fight Over Research-Data Access (Wall Street Journal)
| date = 7 Mar 2016
| url = http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/
}}</ref>
<ref name="MEASSUK201603poll">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = PACE Trial data release : Our March website poll gathers 1,322 votes so far
| date = 16 Mar 2016
| url = http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ }}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="SmithR20160429">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| last2 = Roberts | first2 = Ian | authorlink2 = Ian Roberts
| title = Time for sharing data to become routine: the seven excuses for not doing so are all invalid
| journal = F1000Research | volume = 2016 | issue = 5 | page = 781
| date = 29 Apr 2016
| url = http://f1000research.com/articles/5-781/v1
| doi = 10.12688/f1000research.8422.1
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2018-03-28T11:56:23Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”<ref name="MEAction20160514"/>

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity.<ref name="openletrIMET"/>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: an open letter from two Belgian patient organisations, ME-Gids and WUCB.<ref name="openletrBelg"/>
*2016: an open letter from a Dutch patient group, Groep ME-DenHaag / The Dutch Citizen’s Initiative for ME patients<ref name="openletrNeth1"/> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref name="openletrNeth2"/>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake .. the inevitable conclusion is that they have something to hide."<ref name="SmithR20151216"/> and in article for F1000 Research.<ref name="SmithR20160429"/>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released'.<ref name="MEASSUK201603poll"/>

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]],<ref name="WSJ20160307"/>. <ref> http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/ </ref>.

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrIMET">{{citation
| author = Irish ME Trust | authorlink1 = Irish ME Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 22 Feb 2016
| url = https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf
}}</ref>
<ref name="openletrNeth1">{{citation
| author = Groep ME Den-Haag
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 24 Feb 2016
| url = https://www.facebook.com/GroepMEDenHaag/posts/678816975555397
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>
<ref name="openletrBelg">{{citation
| last1 = Wake Up Call Beweging (WUCB)
| last2 = ME-gids
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrNeth2">{{citation
| last1 = ME/cvs Vereniging
| last2 = ME/CVS Stichting Nederland
| last3 = Steungroep ME en Arbeidsongeschiktheid
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 15 Mar 2016
| url = http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf }}</ref>
<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEAction20160514">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Racianello: PACE Obfuscation will continue “until we are all dead”
| journal = #MEAction
| date = 14 May 2016
| url = http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>
<ref name="MEASSUK201603poll">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = PACE Trial data release : Our March website poll gathers 1,322 votes so far
| date = 16 Mar 2016
| url = http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ }}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="SmithR20160429">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| last2 = Roberts | first2 = Ian | authorlink2 = Ian Roberts
| title = Time for sharing data to become routine: the seven excuses for not doing so are all invalid
| journal = F1000Research | volume = 2016 | issue = 5 | page = 781
| date = 29 Apr 2016
| url = http://f1000research.com/articles/5-781/v1
| doi = 10.12688/f1000research.8422.1
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2018-03-28T11:41:42Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”<ref name="MEAction20160514"/>

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity.<ref name="openletrIMET"/>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: open letter from two Belgian patient organisations, ME-Gids.net and WUCB.<ref name="openletrBelg"/>
*2016: an open letter from Dutch patient group, Groep ME-DenHaag / The Dutch Citizen’s Initiative for ME patients<ref name="openletrNeth1"/> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref name="openletrNeth2"/>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake .. the inevitable conclusion is that they have something to hide."<ref name="SmithR20151216"/> and in article for F1000 Research.<ref name="SmithR20160429"/>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released' <ref> http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ </ref>.

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]],<ref name="WSJ20160307"/>. <ref> http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/ </ref>.

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrIMET">{{citation
| author = Irish ME Trust | authorlink1 = Irish ME Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 22 Feb 2016
| url = https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf
}}</ref>
<ref name="openletrNeth1">{{citation
| author = Groep ME Den-Haag
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 24 Feb 2016
| url = https://www.facebook.com/GroepMEDenHaag/posts/678816975555397
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>
<ref name="openletrBelg">{{citation
| last1 = Wake Up Call Beweging (WUCB)
| last2 = ME-gids
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrNeth2">{{citation
| last1 = ME/cvs Vereniging
| last2 = ME/CVS Stichting Nederland
| last3 = Steungroep ME en Arbeidsongeschiktheid
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 15 Mar 2016
| url = http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf }}</ref>
<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEAction20160514">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Racianello: PACE Obfuscation will continue “until we are all dead”
| journal = #MEAction
| date = 14 May 2016
| url = http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="SmithR20160429">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| last2 = Roberts | first2 = Ian | authorlink2 = Ian Roberts
| title = Time for sharing data to become routine: the seven excuses for not doing so are all invalid
| journal = F1000Research | volume = 2016 | issue = 5 | page = 781
| date = 29 Apr 2016
| url = http://f1000research.com/articles/5-781/v1
| doi = 10.12688/f1000research.8422.1
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2018-03-28T09:52:12Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”<ref name="MEAction20160514"/>

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity <ref> https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf?oref=e </ref>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: open letter from two Belgian patient organisations, ME-Gids.net and WUCB <ref> https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news </ref>
* 2016: an open letter from Dutch patient group, Groep ME-DenHaag/ The Dutch Citizen’s Initiative for ME patients <ref> https://www.facebook.com/GroepMEDenHaag/posts/678816975555397 </ref> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref> http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf </ref>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake... the inevitable conclusion is that they have something to hide.”<ref name="SmithR20151216"/> and in article for F1000 Research <ref> http://f1000research.com/articles/5-781/v1 </ref>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released' <ref> http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ </ref>.

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]],<ref name="WSJ20160307"/>. <ref> http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/ </ref>.

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEAction20160514">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Racianello: PACE Obfuscation will continue “until we are all dead”
| journal = #MEAction
| date = 14 May 2016
| url = http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2018-03-28T09:37:18Z

Suelala:minor reformat of citations

[[File:Pace trial.png|right|300px]]'''The PACE Trial'''<ref name="pace2007protocol"/> (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name="pace2007protocol"/> was a large-scale trial of treatments for people with [[chronic fatigue syndrome|Chronic Fatigue Syndrome]] (CFS), also known as [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus [[adaptive pacing therapy|Adaptive Pacing Therapy]] (APT), [[cognitive behavioral therapy|Cognitive Behavioral Therapy]] (CBT), or [[graded exercise therapy|Graded Exercise Therapy]] (GET). The experimenters hypothesised that the CBT and GET groups would do best,<ref name="pace2007protocol"/> and reported that this is what the trial's results showed<ref name="pace2011a"/><ref name="pace2013a"/><ref name="pace2015FU"/> but the claim has proved controversial.<ref name="MEACTIONpacepetition"/><ref name="openletrLANCET1"/>

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care<ref name="NICEguideCG53"/> and private medical insurance.<ref name="SwissRe2011"/>

 

==Background==

The PACE trial<ref name="pace2011a"/> was funded by the UK Medical Research Council, [[Department of Health]] for England, Scottish Chief Scientist Office, and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]]. It cost £5 million<ref name="RAE2008cost"/> and is the most expensive piece of research into [[ME/CFS]] ever conducted.

Recruitment of patients began in March 2005 and data collection was completed in January 2010.<ref name="pace2011a"/> The study protocol was published in BMC Neurology in 2007.<ref name="pace2007protocol"/> The main study outcomes were published in [[The Lancet]] in 2011<ref name="pace2011a"/> and the experimenters continue to publish papers on the trial.<ref name="paceLIST"/>

The principal investigators were Professors [[Peter White]], [[Trudie Chalder]], and [[Michael Sharpe]]. Although not an author, Professor [[Simon Wessely]] provided feedback on their report.<ref name="pace2011a"/> He stated in November 2015 that "there are also more trials in the pipeline".<ref name="paceWesselyTitanic"/>

==Study design==

641 patients were randomised into four groups in the study.<ref name="pace2011a"/> All received specialist medical care (SMC), which consisted of medication for symptoms such as insomnia and pain, and general advice to avoid extremes of rest and inactivity.<ref name="PACEmanualSSMC"/> One group received SMC alone. Patients in another group additionally received adaptive pacing therapy (APT), and were advised to stay within the limits of activity imposed by the disease to give their bodies the best chance of recovery.<ref name="PACEmanualPAPT"/> The other two groups were both told that they were not ill but deconditioned, and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> The cognitive behavioural therapy (CBT) group focused on addressing their presumed fear of activity while the graded exercise (GET) group focused on increasing their activity in a structured manner, with regular aerobic exercise as the eventual goal.

Patients in the APT, CBT and GET groups were offered up to 14 sessions with a therapist over a six-month period, to support them in following their therapy programmes, with a top-up session at 36 weeks. They also received a lengthy manual<ref name="PACEmanualPAPT"/><ref name="PACEmanualPCBT"/><ref name="PACEmanualPGET"/> explaining their therapy. All participants were offered at least three sessions of SMC.

Patients were assessed at baseline, 12 weeks, 24 weeks and 52 weeks. The main outcome measures were self-rated fatigue and physical function. Secondary measures included the study's objective variables such as a six-minute walking test, a fitness test and economic measures including the number of days of work lost due to fatigue, and the receipt of sickness benefits.<ref name="pace2007protocol"/>

Patients were also followed up (using subjective ratings only) at least two years after randomisation.<ref name="pace2015FU"/>

==Findings==

The trial's results showed that patients in the CBT and GET groups improved more in self-rated fatigue and physical function than the APT or SMC-only groups.<ref name="pace2011a"/> Apart from the GET group improving slightly more than the others on the six-minute walking test,<ref name="pace2011a"/> all of the study's objective measures<ref name="pace2012CE"/><ref name="pace2015SMA"/> and the long-term follow-up data<ref name="pace2015FU"/> (self-ratings of fatigue and physical function) showed no difference between groups.

The authors reported, in a 2013 paper specifically about recovery, that 22% of patients in the CBT and GET groups had recovered following these therapies, compared to 8% in the APT group and 7% in the SMC-only group.

==Impact==

The PACE trial and other studies that use the [[Oxford criteria]] for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and also on public policies toward treating and researching it.

===Media===
[[File:DailyTelegraphExercisePositivity.jpg|400px|thumb|right|Daily Telegraph headline suggesting positivity and exercise]]

On February 27, 2011, when the first PACE trial paper was published, researchers Michael Sharpe and Trudie Chalder held a press conference<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> to discuss their findings. Chalder stated, “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal.”<ref name="Guardian20110218"/> That assertion has been criticized for grossly overstating the study's actual findings.<ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/>

The claims made about the study were covered in the UK and international press.<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/><ref name="CNNnews20110218"/><ref name="MedNewsToday2013"/> For example, The Daily Mail stated, "Fatigued patients who go out and exercise have best hope of recovery",<ref name="DailyMail20110218"/> while The New York Times declared "Psychotherapy Eases Chronic Fatigue Syndrome".<ref name="NYT20110218"/> According to the British Medical Journal's report on the trial, some participants were "cured."<ref name="Tuller20151021"/>

Many other PACE papers followed, although with relatively little media attention until October 2015, when long-term follow-up results were published in [[The Lancet Psychiatry]].<ref name="pace2015FU"/><ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="FoxNews20150114"/><ref name="Guardian20150114"/> The Daily Telegraph ran a front-page story with the headline, "Exercise and positivity can overcome ME."<ref name="Telegraph20151028"/><ref name="MEAction20151028ptcg"/> The piece stated, "Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found". The article quoted Professor Sharpe describing ME as a “self-fulfilling prophesy” that happens when patients live within their limits. The article was altered following public pressure but no formal retraction was made. Science Magazine also published an article in October 2015 along with comments from Sharpe about the growing criticism outwith the patient community from the broader science community.<ref name="ScienceMag20151027"/>

In the UK the [[Science Media Centre]] is a government-funded body that describes its purpose as being to improve science journalism. Its reporting on ME/CFS has been criticized for bias towards a psychological etiology for the disease.<ref name="MEACTUK20110416"/>

===Influence on treatment===

The sheer size of the PACE trial means that it dominates the evidence base in ME/CFS. Together with other studies of CBT and GET, it is highly influential in UK clinical policy and that of many other countries, both in terms of healthcare provided by government<ref name="NICEguideCG53"/> and by private medical insurance.<ref name="SwissRe2011"/>

In the UK, the NICE guidelines for NHS-provided care<ref name="NICEguideCG53"/> recommend CBT and GET for ME/CFS. They were published in 2007, before the PACE trial was conducted, but the evidence was based on a few small trials and was considered "somewhat limited".<ref name="BACME201103"/> The ME Association has asked for the guidelines to be updated to take into account new treatment evidence, noting, "we assume that the guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET."<ref name="MEASSUK20131023"/> NICE responded, "we still do not feel that the evidence base is substantially evolving in this area at this time" and the guidelines currently remain on the "static" list.<ref name="NICEguideCG53static"/>

In the US, the Mayo Clinic, Cleveland Clinic, Kaiser Permanente, and numerous key secondary medical education providers, such as UpToDate and WebMD, recommend CBT and GET, using PACE as a reference. CBT and GET are included in the Center for Disease Control's clinical guidelines for CFS, based on the PACE trial evidence.<ref name="CDCguideMECFS"/>

==Criticisms of the study==

===Selection of patients===

The PACE trial used the [[Oxford criteria]] for diagnosis. Many patients and specialist clinicians consider them overly broad,<ref name="EgelandT2015"/><ref name="JasonLA2016casedef"/> and the National Institutes of Health 2015 P2P report<ref name="NIHP2PFIN"/> on ME/CFS recommended that the Oxford definition be retired for this reason.

===Changes in criteria for effectiveness and recovery===

[[File:PACEthreshold.jpg|right|upright=1.5|PACE recovery thresholds - author confusion]]

The authors abandoned their protocol-specified main outcome and recovery analyses partway through the trial and replaced them with others.<ref name="pace2011a"/><ref name="pace2013a"/> They have defended the changes, noting, "All these changes were made before any outcome data were analyzed (i.e. they were pre-specified), and were all approved by the independent Trial Steering Committee and Data Monitoring and Ethics committee."<ref name="Tuller20151030a"/> However, 42 scientists, in an open letter to The Lancet, stated that the changes were of "of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol."<ref name="openletrLANCET2"/>

Most notably, the authors introduced post-hoc "normal ranges" for fatigue and physical function.<ref name="pace2011a"/> These ranges have been heavily criticised for having thresholds so low that patients could worsen from trial entry and yet be within these normal ranges. The "normal range" for physical function (measured on the [[SF-36]] 100-point scale) was 60 and above, even though patients had to score 65 or lower to enter the trial. A score of 60 is close to the mean physical function score (57) of patients with Class II coronary heart failure.<ref name="Juenger2012"/>

[[File:PACE-SF36-stats.org.png|right|upright=0.8|PACE recovery thresholds - much lower than for healthy people of similar age]]<blockquote>"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60."<ref name="GoldinR20160321"/></blockquote>

The PACE authors used the "normal ranges", in conjunction with other thresholds, to define clinical effectiveness in the Lancet<ref name="MEAction20151028lancet"/> paper and recovery rates in a later paper in Psychological Medicine.<ref name="MEAction20151028psymed"/>

All Freedom of Information requests to the authors for the main outcome and recovery results according to the protocol-specified analyses, or for the underlying data so that others could conduct the analyses, have been refused.<ref name="FOI20131029C"/><ref name="FOI20140324M"/><ref name="FOI20150629GM"/><ref name="FOI20160309AS"/>

===Use of subjective main outcome measures===

The study has been criticised for having subjective primary analyses in an unblinded trial.<ref name="EdwardsJC20150118"/> Subjective measures are known to be susceptible to bias, as can arise from expectations and social pressure. The CBT and GET groups, but not the others, were told that there was nothing to stop them from recovering if they gradually increased their activity, and critics have argued that these differential expectations could have inflated their self-assessments.<ref name="openletrLANCET1"/><ref name="EdwardsJC20151101"/>

===Conflicts of interest and lack of informed consent===

The forty-two scientists and clinicians who wrote an [[open letter to the Lancet]] complaining about the PACE trial criticized the study authors' failure to disclose a potential conflict of interest to trial participants.<ref name="openletrLANCET2"/> They wrote:

<blockquote>"The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be 'adequately informed' about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate."</blockquote>

===Newsletter to participants===

The investigators published newsletters for participants<ref name="pacenwsltr1"/><ref name="pacenwsltr2"/><ref name="pacenwsltr3"/><ref name="pacenwsltr4"/> while the trial was still underway. Critics have said that the material in the third newsletter<ref name="pacenwsltr3"/> could have influenced patients' self-reported outcomes. It included a number of positive testimonials from patients in the trial, but without naming their therapies. The PACE authors have argued that this meant that there would be no bias in favour of CBT and GET<ref name="Tuller20151030a"/> but Professor James Coyne has dismissed the idea that bias would be expected to affect all four groups equally.<ref name="Coyne20151029po"/><ref name="Coyne20151029mb"/>

The newsletter did, however, announce that the new NICE guidelines, "based on the best available evidence... recommended therapies [that] include Cognitive Behavioural Therapy, Graded Exercise Therapy and Activity Management." There was no explanation of what "Activity Management" was: no group had that title in the PACE trial. Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.<ref name="Tuller20151021"/>
The newsletter also contained a less than positive assessment of research on the possibility of an infectious component of ME/CFS, including research by [[Jose Montoya]] on [[herpesvirus]]es and by [[John Chia]] on [[enterovirus]]es. The newsletter said of Dr Chia's work, for example, "The laboratory work looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients." It is possible that this negative view of evidence of an ongoing infection would have made the rationale for APT appear less plausible and that for CBT and GET more plausible, thus biasing the participants.

An account of another study, in contrast, gave a positive assessment of CBT, saying "cognitive behaviour therapy was associated with an increase in grey matter of the brain and this increase was associated with improved cognitive function".

===Risks and side effects===

A survey<ref name="MEASSUK20150529survey"/> conducted by the [[ME Association]] in 2012 showed that 74% of patients had their symptoms worsen after a course of GET. In contrast, the PACE trial found no apparently meaningful difference in rates of adverse events between the four trial groups,<ref name="pace2014AE"/> suggesting that APT, CBT and GET added no risk to SMC alone (since all four groups received SMC). However, critics have questioned whether patients actually increased their activity sufficiently in the CBT and GET groups to trigger many serious adverse events:<ref name="Kindlon2011"/><ref name="Tuller20160107"/> the lack of improvement in the step-fitness test in all groups indicates that this is distinctly possible.<ref name="pace2015SMA"/>

==Analysis by "citizen-scientists" - ME Sufferers and Charities==

Several patients and other interested parties have produced critiques of PACE's statistical analyses and trial methodology.

===[[Robert Courtney]]===
Mr Courtney has written a number of published letters in the medical journals, criticising PACE.

<blockquote>"Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical [[deconditioning]] model of GET for chronic fatigue syndrome".<ref name="CourtneyRob201504lanpsy"/></blockquote>

=== [[Peter Kemp]] ===

[[Peter Kemp]] has written a detailed 30 page critique of the study split into 10 sections called the [https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view#heading=h.d4e0wlbznjk1 'PACE Trial Analysis'] <ref name="KempPet201602"/>.

===[[Angela Kennedy]]===
[[Angela Kennedy]] has made specific critiques of PACE regarding the following areas:<ref name="KennedyAng20160210"/>

# Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
# Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
# Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
# Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
# The inclusion of major mental illnesses in the research cohort;
# The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
# The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
# The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

===[[Frank Twisk]]===
Dutch patient Frank Twisk of the ME-de-patiënten Foundation has also published criticism of the PACE trial.<ref name="Twisk20160118"/>

<blockquote>"The PACE trial investigated the effects of CBT and GET in chronic fatigue, as defined by the Oxford criteria, not in chronic fatigue syndrome, let alone myalgic encephalomyelitis".</blockquote>

<blockquote>"[T]he positive effect of CBT and GET in subjective measures, fatigue and physical functioning, cannot be qualified as sufficient. Mean short form-36 physical functioning scores in the CBT group (62·2) and the GET group (59·8) at follow-up were below the inclusion cutoff score for the PACE trial (≤65)3 and far below the objective for recovery as defined in the PACE protocol (≥85)."</blockquote>

<blockquote>"The vast majority of patients improved subjectively by specialist medical care and APT to the same level as by CBT and GET, without any additional therapies, including CBT and GET, or by other therapies."</blockquote>

<blockquote>"[L]ooking at subjective outcomes at follow-up and objective outcomes in earlier studies, such as physical fitness, return to employment, social welfare benefits, and health-care usage, CBT and GET, like specialist medical care and APT, cannot be qualified as effective".</blockquote>

===[[Tom Kindlon]]===

[[Tom Kindlon]] a patient and Vice-Chairman of the [[Irish ME/CFS Association]]. He has published extensive criticism of the PACE trial. In 2011 he published a paper on harms associated with [[Graded exercise therapy]].<ref name="Kindlon2011"/>

Mr Kindlon has also written a large number of letters and comments that have been published in medical journals in response to the published papers.

Among many other published letters that have been critical of the trial, many are from people who have identified themselves as patients. For example, most of the letters published by The Lancet criticising the 2011 PACE paper were from patients or representatives of patients' groups.<ref name="Mitchell20110517"/><ref name="FeehanSar20110517lancet"/><ref name="Giakoumakis20110517lancet"/>

===ME Analysis: Evaluating the results of the PACE Trial study===

[[Janelle Wiley]] and [[Graham McPhee]] also collaborated with others from Phoenix Rising to create [http://evaluatingpace.phoenixrising.me/ 'ME Analysis: Evaluating the results of the PACE Trial' website] summarising their critique of the trial.

It examined the flaws with the PACE trial and came up with 10 conclusions. The 'ME Analysis: Evaluating the results of the PACE Trial' is presented in the form of [http://evaluatingpace.phoenixrising.me/summary.html 10 conclusions]. Clicking on each conclusion will lead to a short summary, and clicking on the links underneath each summary will, if you wish, lead you ever deeper into our analysis.

===ME Analysis videos by Phoenix Rising===

Members of [[Phoenix Rising]] including [[Graham McPhee]] and [[Tom Kindlon]] have collaborated on a set of explanatory videos about flaws in PACE's statistical analyses on YouTube:

* [https://www.youtube.com/watch?v=Sa3LyYxu49s Video 1: The PACE Race]
* [https://www.youtube.com/watch?v=PJf27ExfyMA Video 2: 60 - The new 75]
* [https://www.youtube.com/watch?v=qXMZv0MzFCo Video 3: Not so bad]
* [https://www.youtube.com/watch?v=b3_mjQe-t1M Video 4: The force of LOGic]
* [https://www.youtube.com/watch?v=QbKTBMyZfX0 Video 6: ME Recovery Song]
* [https://www.youtube.com/watch?v=d_7J5ELjArU Video 7: How's That Recovery?]

=== ME Charities criticism and complaints ===

Charities have criticised it including Invest in ME <ref name="InvIME20151114"/>. [[Jane Colby]] of [[Tymes Trust]] wrote a letter to the Guardian <ref name="Guardian20110224truth"/>. The ME Association have also criticised the PACE trial.

=== [[MEAction]] ===
[[MEAction]] has published a [http://www.meaction.net/pace-trial/ 'PACE Trial overview'] of the PACE trial and its flaws, produced by patients.<ref name="MEACTION20151028pto"/> MEAction have also produced a factsheet of [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf 'Why ME patients are critical of the PACE trial'] which addresses three major myths which have been created by the PACE trial investigators and the harms that these myths have caused [http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf]<ref name="MEACTION201505pvpt"/>. The myths busted include MYTH: 1 'The controversy is fueled by a vocal minority of “vociferous” ME militants on the internet, 2. MYTH: M E sufferers oppose GET because they are afraid of exercise 3. MYTH: M E sufferers oppose CBT because they are afraid of the stigma of mental illness.

=== Briefing document from a [[Science for ME]] working group ===

Consisting of patients including [[Tom Kindlon]], [[Sean Kirby]] and [[Graham McPhee]], this working group has produced a document to concisely explain the flaws in the PACE trial.
* [https://s4me.info/threads/science-for-me-pace-briefing-document.3140/ The PACE Trial Controversy: A Summary]

==Controversy==

The PACE Trial has been heavily criticised by patient groups and some researchers and science journalists for a number of methodological problems since its publication. <ref name="Tuller20151021"/><ref name="Tuller20151022"/><ref name="Tuller20151023"/><ref name="Tuller20151030a"/><ref name="Tuller20151030b"/><ref name="Tuller20151104"/><ref name="Tuller20151109"/><ref name="Tuller20151117"/><ref name="Tuller20160104"/>

=== Prof Malcolm Hooper's complaints ===
Prof [[Malcolm Hooper]] and [[Margaret Williams]] have followed the PACE trial from its inception in 2004 and provided salutary warnings about the possible issues and problems with the conduct of the trial due to their previous knowledge of the principal investigators research.<ref name="HoopWill20040620"/><ref name="HoopWill20091217"/>

They then published a 400 page critique of the PACE trial in February 2010 'Magical Medicine: How to make a disease disappear'.<ref name="HoopWill201002MM"/> In February 2011 upon publication of the PACE trial findings, Prof Hooper submitted a comprehensive complaint to the editor of the Lancet<ref name="HoopWill201103"/> and a further detailed response<ref name="HoopWill20110528"/>.

Prof Hooper et al in 2011 published further concerns about the PACE trial<ref name="HoopWill20110604"/> and have also examined the role of the Science Media Centre and the insurance industry with the PACE trial<ref name="HoopWill201309a"/>. The Key Concerns about the PACE trial were also published in 2013 by MEActionUK.<ref name="HoopWill201309b"/> Prof Hooper has published a summary of the key dates and chronology of the trial since 2004.<ref name="HoopWill20151114"/>

=== Major Investigation by Investigative journalist and academic in public health & journalism - Dr David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr [[David Tuller]]'s investigative Tour de Force "Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" publication on Virology Blog which gave a detailed analysis of PACE's methodological problems. Dr Tuller continues to publish articles criticising different aspects of the trial.<ref name="viroblogMECFS"/> The main articles for the Trial by Error Series are listed below.

'''Trial by Error Series'''
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*July 10, 2016 - [http://www.microbe.tv/twiv/twiv-397/ TWiV 397 podcast] with Dr. Tuller and Dr Racaniello (1:03)
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Sep 1, 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Sept 6, 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sept 22, 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Oct 27, 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Mar 13, 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Mar 23, 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]

The PACE trial authors with the exception of their response to Virology on October 30 2015 have refused to respond to or engage with David Tuller about any of these concerns. They refused to respond and ignored a number of requests for comments by David Tuller in 2015 and 2016. Similarly Richard Horton, editor of the Lancet has refused to respond to Tuller about these concerns or about retraction of the PACE trial publication. Sir [[Simon Wessely]] on behalf of the PACE trial principal investigators did publish an article in November 2015 [https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ The PACE trial for chronic fatigue syndrome: choppy seas but a prosperous voyage] referring to the growing concerns over the PACE trial. This was published in a blog website called National Elf Service run by the Mental Elf in which he used an analogy of the clinical trial as an ocean liner crossing the Atlantic.<ref name="paceWesselyTitanic"/>

=== Further criticism from scientific community ===

Dr [[James Coyne]], Professor of Health Psychology, at the University Medical Centre Gronigen (UMCG), published on PLoS One Blog on 29 October 2015 [http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/ 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'].<ref name="Coyne20151029mb"/> He gave a talk at Edinburgh University in November 2015 heavily criticising the PACE trial <ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/><ref name="Coyne20151116-ss"/>. He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/> Professor Coyne has also questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/> He has continued to critique the PACE trial.<ref name="CoyneMECFSIndex"/>

Dr [[Keith Laws]], Professor of Neuropsychology, at the University of Hertfordshire has also criticised the PACE trial in a number of blogs on his website in November 2015 <ref name="LawsKth201511ptah"/><ref name="LawsKth201511sfs"/>. He also co-authored a letter in the Lancet Psychiatry in 2016 with [[James Coyne]] [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext 'Results of the PACE follow-up study are uninterpretable']<ref name="CoyneLaws20160118"/>.

Science journalist, [[Julie Rehmeyer]] published an article in Slate Magazine in November 2015 called [http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html "Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting"] and contrasted the hope that sufferers had with research being conducted in the US and the UK researchers involved with PACE trial <ref name="Rehmeyer20151113"/>. Julie Rehmeyer has continued to criticise the PACE trial with further publications and in conferences.

Lucy Bailey, a former editor of the Lancet, analysed the PACE trial and provided her comments on the controversy and concluded "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back"<ref name="BaileyL201601"/>. Lucy Bailey also wrote a letter to the Lancet Infectious Disease called 'A case for Retraction?' <ref name="BaileyL201710"/>.

Dr [[Mark Vink]], a family physician in the Netherlands, published in the Journal of Neurology and Neurobiology on 30 March 2016
[https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review"]<ref name="VinkM2016"/>.

Prof [[Jonathan Edwards]] has declared that "PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is". He also stated "the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias." <ref name="EdwardsJC20151101"/>.

In early 2016, Leonid Schneider, a science journalist, entered the debate and criticised the lack of data sharing by the PACE trial authors and the Lancet and its editor Richard Horton's role in the scandal and compared it to other recent Lancet scandals. <ref name="Schneider20160405"/> <ref name="Schneider20160219"/> <ref name="SchneiderIndex"/>

Prof [https://en.wikipedia.org/wiki/Andrew_Gelman Andrew Gelman], Professor of Statistics and Political Science at Columbia University, examined the Lancet's role in how the PACE trial got taken so seriously and stayed afloat for so long.<ref name="GelmanA20151223"/><ref name="GelmanA20151225"/><ref name="GelmanA20160105"/><ref name="GelmanA20170709"/>

Dr Sten Helmfrid published an article in the journal Socialmedicinsk tidskrift in September 2016 [https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading 'Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading'] that criticized not only the PACE trial, but the entire CBT/GET paradigm for ME/CFS. "The underlying model has no theoretical foundation and is at odds with physiological findings. Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."<ref name="HelmfridS201609"/>

Sonia Lee, a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and gave a damning conclusion that the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide"/><ref name="LeeSonia-video"/>

Professor Leonard Jason in the Journal of Health Psychology wrote in February 2017 [http://journals.sagepub.com/doi/full/10.1177/1359105317695801 'The PACE trial missteps on pacing and patient selection'] which criticised the issue of patient selection in the trial with the use of the [[Oxford criteria]] included those without the disease and the PACE trial investigators did not design and implement a valid pacing intervention in the trial.<ref name="JasonLA201702"/>

Dr [[Sarah Myhill]] in her August 2017 video on 'Medical Abuse in ME Sufferers (MAIMES)' called the PACE trial "fraudulent" and "a criminal act" and is an "abuse" of "vulnerable people" and "defrauds them of benefits".<ref name="MyhillS201708-video"/>

===Scientists' open letter to The Lancet and Psychological Medicine===

In November 2015, scientists [[Ronald Davis]], [[David Tuller]], [[Vincent Racaniello]], [[Jonathan Edwards]], [[Leonard Jason]], [[Bruce Levin]] and [[Arthur Reingold]] wrote an open letter to The Lancet citing "major flaws" in the original trial publication and asking for an independent re-analysis of the individual-level trial data.<ref name="openletrLANCET1"/> The journal failed to respond.

In February 2016 the open letter was re-published with 36 additional signatures from doctors and researchers including: [[Dharam Ablashi]], [[Lisa Barcellos]], [[James Baraniuk]], [[Lucinda Bateman]], [[David Bell]], [[Alison Bested]], [[Gordon Broderick]], [[John Chia]], [[Lily Chu]], [[Derek Enlander]], [[Mary Ann Fletcher]], [[Kenneth Friedman]], [[David Kaufman]], [[Nancy Klimas]], [[Charles Lapp]], [[Susan Levine]], [[Alan Light]], [[Sonya Marshall-Gradisnik]], [[Peter Medveczky]], [[Zaher Nahle]], [[James Oleske]], [[Richard Podell]], [[Charles Shepherd]], [[Christopher Snell]], [[Nigel Speight]], [[Donald Staines]], [[Philip Stark]], [[John Swartzberg]], [[Ronald Tompkins]], [[Rosemary Underhill]], [[Rosamund Vallings]], [[Michael VanElzakker]], [[William Weir]], [[Marcie Zinn]] and [[Mark Zinn]].<ref name="openletrLANCET2"/>

Richard Horton, the editor of the Lancet, requested it to be submitted as an official letter but after 6 months of chasing he rejected it and refused to publish the letter.<ref name="MEACTION20160905"/><ref name="TWIV20160821"/>

On 13 March 2017 [[David Tuller]] and the original signatories to the open letter to the Lancet in 2016 and an additional 37 signatories signed an open letter to the Journal of Psychological Medicine. In total 102 signatories signed this open letter regarding the recovery paper of 2013 to the Journal of Psychological Medicine.

These included scientists and medical professionals including [[Molly Brown]], [[Todd Davenport|Todd E. Davenport]], [[Simon Duffy]], [[Meredyth Evans]], [[Robert Garry|Robert F. Garry]], [[Keith Geraghty]], [[Ian Gibson]], [[Rebecca Goldin]], [[Ellen Goudsmit]], [[Maureen Hanson]], [[Malcolm Hooper]], [[Betsy Keller]], [[Andreas Kogelnik|Andreas M. Kogelnik]], [[Eliana Lacerda|Eliana M. Lacerda]], [[Vincent Lombardi|Vincent C. Lombardi]], [[Alex Lubet]], [[Steven Lubet]], [[Patrick McKnight|Patrick E. McKnight]], [[Jose Montoya|Jose G. Montoya]], [[Henrik Nielsen]], [[Elisa Oltra]], [[Nicole Porter]], [[Anders Rosén]], [[Peter Rowe|Peter C. Rowe]], [[William Satariano]], [[Ola Saugstad|Ola Didrik Saugstad]], [[Eleanor Stein]], [[Staci Stevens]], [[Julian Stewart]], [[Leonie Sugarman]], [[Mark VanNess]], [[Mark Vink]], [[Frans Visser]], [[Tony Ward]], [[John Whiting]], [[Carolyn Wilshire]] and [[Michael Zeineh]].

27 ME Charities from 17 countries also co-signed the open letter including [[25 Percent ME Group]] (UK), [[Emerge Australia]], [[European ME Alliance]], Belgium ME/CFS Association, ME Foreningen (Denmark), Suomen CFS-Yhdistys (Finland), Fatigatio e.V. (Germany), Het Alternatief (Netherlands), Icelandic ME Association, [[Irish ME Trust]], Associazione Malati di CFS (Italy), Norges ME-forening (Norway), Liga SFC (Spain), Riksföreningen för ME-patienter (Sweden), Verein ME/CFS Schweiz (Switzerland), [[Invest in ME]] Research (UK), Hope 4 ME & Fibro Northern Ireland, Irish ME/CFS Association, Massachusetts CFIDS/ME & FM Association (USA), [[ME Association]] (UK), ME/cvs Vereniging (Netherlands), [[National ME/FM Action Network]] (Canada), New Jersey ME/CFS Association (USA), Pandora Org (USA), [[Phoenix Rising]], International Solve ME/CFS Initiative (USA), [[Tymes Trust]] (UK), and Wisconsin ME & CFS Association (USA).

On 23 March 2017 David Tuller reported that one of the editors of the Journal of Psychological Medicine, Sir Robin Murray, responded with "an unacceptable response." Tuller restated that "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling." The open letter was reposted with 17 additional individuals and 23 more charities. These included more scientists, medical p, rofessionals and lawyers including [[Norman E. Booth]], PhD, FInstP, Joan Crawford, CPsychol, CEng, CSci, MA, MSc, Lucy Dechene, PhD, [[Valerie Eliot Smith]], Margaret C. Fernald, PhD, Simin Ghatineh, MSc, PhD, Alan Gurwitt, M.D., Geoffrey Hallmann, LLB, DipLegPrac, Susan Levine, MD, Marvin S. Medow, Ph.D., Sarah Myhill MB BS, Pamela Phillips, Gwenda L Schmidt-Snoek, PhD, Robin Callender Smith, PhD, Samuel Tucker, MD, AM Uyttersprot, MD, Paul Wadeson, Bsc, MBChB, MRCGP.

An additional 25 charities to sign included Action CND (Canada), Associated New Zealand ME Society, Chester MESH group, Deutsche Gesellschaft für ME/CFS, Lost Voices Stiftung (Germany), M.E. Victoria Association
(Canada), ME North East (UK), ME Research UK, ME Self Help Group Nottingham (UK), ME/CFS and Lyme Association of WA, Inc. (Australia), ME/CFS (Australia) Ltd, ME/CFS Australia (SA), Inc., ME/CVS Stichting Nederland, ME/FM Society of British Columbia (Canada), [[MEAction]], Millions Missing Canada, National CFIDS Foundation, Inc. (USA), North London ME Network (UK), Oxfordshire ME Group for Action (UK), Open Medicine Foundation
(USA), Quebec ME Association (Canada), The York ME Community (UK), Welsh Association of ME & CFS Support (UK) and Steungroep ME en Arbeidsongeschiktheid (Netherlands).

===Petitions and Protests===

On October 28, 2015, [[MEAction]] launched a petition addressed to The Lancet, Psychological Medicine and the PACE trial authors, calling for an independent analysis of the data and the retraction of some of the PACE trial's "misleading claims" based on "absurd 'normal ranges' for fatigue and physical function". The petition was closed in February 2016, having gathered 11,897 signatures from people in sixty-four countries.<ref name="MEACTIONpacepetition"/><ref name="MEACTIONpacepetitiondelivered"/>

A US petition to the [[Agency for Healthcare Research and Quality]] (AHRQ) and the [[Centers for Disease Control]] was also launched in late 2015, asking government agencies to remove guidelines and recommendations based on PACE and other studies using the [[Oxford definition]] of ME/CFS.<ref name="MEAction20151116petition"/>

During International ME Awareness day (12 May) in 2017 due to the intransigence of the PACE researchers for years, a [[Millions Missing]] protest in London resulted in hundreds of patients protesting against the PACE trial <ref> https://twitter.com/lacooperUK/status/863505581298130945 </ref> <ref> https://twitter.com/lacooperUK/status/863701801165606913 </ref> <ref> http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw</ref>

===Breaches of patient's data security by study investigators===

In 2006 confidential PACE trial patient data was stolen from an unlocked drawer at King's College London.<ref name="pace20060331theft"/>

[[Malcolm Hooper]] documents in ''Magical Medicine'' how in 2005 confidential patient data was erroneously released by PACE author Professor [[Michael Sharpe]] in relation to another study.<ref name="HoopWill201002MM-b"/>

=== The Centre for Welfare Reform - 'In the Expectation of Recovery' ===

The [[Centre for Welfare Reform]] published a 64 page report in April 2016 examining the PACE trial and relating the study to the biopsychosocial model and its links and influence from the insurance industry and government welfare reforms. The report titled [http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html 'In the Expectation of Recovery'] by George Faulkner heavily criticised the PACE trial and stated “The way in which the biopsychosocial model has been used and promoted, without good supporting evidence for many of the claims being made, is unethical.” and “Had homeopaths or a pharmaceutical company conducted a trial and presented results in the manner of the PACE trial the British research community would have been unlikely to overlook its problems.”<ref>
http://www.meaction.net/2016/04/26/centre-for-welfare-reform-criticises-pace-trial </ref> Dr [[Simon Duffy]] writing in the Huffington Post questioned the motive of the research in [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html 'The Misleading Research at the Heart of Disability Cuts'].<ref name="DuffyS20160420"/>

=== Sense About Science USA ===

[http://www.senseaboutscienceusa.org Sense about Science USA] (SAS USA) published a major statistical examination of the PACE trial in March 2016. The Executive Director of SAS USA, Trevor Butterworth wrote an accompanying [http://www.stats.org/editorial-on-pace/ editorial on PACE].<ref name="ButterworthT20160321"/> Prof Rebecca Goldin of Mathematical Sciences at George Mason University and Director of STATS (a collaboration between SAS USA and the American Statistical Association) wrote the 7000 word statistical critique [http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ PACE: The research that sparked a patient rebellion and challenged medicine.] <ref name="GoldinR20160321"/>

=== Other major investigations and reports ===
In August 2016 [[Julie Rehmeyer]] presented a critique of the PACE trial at the largest gathering of statisticians in North America, the [https://ww2.amstat.org/meetings/jsm/2016/conferenceinfo.cfm Joint Statistical Meeting 2016], in Chicago titled [https://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial]. Rehmeyer said “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.” <ref name="Rehmeyer20160808"/>

=== PACE Trial in UK Parliament ===

The PACE Trial has been the subject of a number of [http://www.parliament.uk/search/results/?pagesize=100&q=%22pace+trial%22&page=0 parliamentary enquiries] by parliamentarians mainly the [[Countess of Mar]]. The [[Countess of Mar]] asked questions of the government via a short debate in the House of Lords on the assessment of the PACE trial on 6 February 2013. A video and transcript is available on YouTube and Hansard.<ref name="UKParl20130206-video"/><ref name="UKParl20130206-transcript"/> Comments and analysis on the PACE trial and its establishment defenders has also been made by advocates.<ref name="HoopWill20130206"/>

During the court case below in 2015 by [[Alem Matthees |Matthees]] and the Information Commissioners Office v QMUL it was stated by [[Peter White]] that he regarded parliamentary debates as harassment and had to brief those taking part in the debate.

In November 2016 [https://www.parliament.uk/biographies/commons/Kelvin-Hopkins/2 Kelvin Hopkins MP] asked [http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome seven written questions ] relating to the PACE Trial including "request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred." and "prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted."

The Countess of Mar has also asked in February 2017 the Committee of Public Accounts to investigate the use of public funds on the PACE Trial and the PACE authors use of public funds to resist requests to release anonymised clinical trial data. Her letter included a report which stated the trial was "professional misconduct and/or fraud" and "Professor White obtained ethical approval for the study under false pretences".<ref name="HoopWill20170201"/>

==Response to criticism==

===Response===

The trial investigators have replied to some criticism of the trial but have been much criticised as being evasive and not responding to the issues raised.

Some of their response to letters to The Lancet concerning their main analyses,<ref name="pace20110517corr"/> Psychological Medicine concerning their recovery analyses,<ref name="various201308psymed"/> and Lancet Psychiatry concerning their secondary mediation analyses <ref name="pace2015corrlanpsy0114-5"/> and long-term follow-up paper.<ref name="pace2016corrlanpsy00018-3"/> A letter to the BMJ by Tom Kindlon<ref name="Kindlon20130830bmj6559900"/> drew a reply from the authors<ref name="pace2013corrbmj664559"/> that in turn received 31 responses of its own.<ref name="various2013bmjf5963"/>

Since the controversy with criticism from the scientific community they have largely not responded to the key concerns and have repeated their earlier arguments.

The investigators have also responded to a 14,000-word critique by public health expert and journalist Dr David Tuller.<ref name="Tuller20151030a"/> Dr Tuller wrote a rebuttal to their response.<ref name="Tuller20151030b"/> He has said, “The PACE authors have long demonstrated great facility in evading questions they don’t want to answer”.

Professor [[James Coyne]] reported that he agreed to debate the authors on health website National Elf about the trial but that they declined.<ref name="Coyne20151104"/> Professor [[Simon Wessely]] was given the vacated National Elf spot and wrote a lengthy article praising the trial, noting that he once described it as "a thing of beauty" and saying, "We can accept that PACE was a good trial and we can have some confidence in its findings".<ref name="paceWesselyTitanic"/>

===Allegations of harassment, death threats and smear campaign===

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists publicised that they were receiving death threats and harassment.

The PACE trial investigators and Professor [[Simon Wessely]] have publicly claimed they have been harassed and subjected to death threats.<ref name="Guardian20110821"/><ref name="paceWessely20110827"/><ref name="paceWessely20110729"/><ref name="ZimmerC20110821"/><ref name="ScienceMag20110906"/><ref name="Telegraph20110729"/><ref name="StuffNon20121117"/> <ref name="BBCUK20110721"/> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called 'Dangers of research into chronic fatigue syndrome'.<ref name="Hawkes2011"/> The Times article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806"/>. An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative.<ref name="SunTimesUK20130505"/> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928"/>

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts"/> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318"/> and who have dismissed several as "vexatious":<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318"/>

The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd"/> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio"/> <ref name="pace20110418radio-archive"/>

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119"/>

The PACE trial authors refused to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article was published during this period by their associates in Nature in which they bizarrely in [https://en.wikipedia.org/wiki/Psychological_projection projection] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125"/><ref name="Lewandowsky20160204"/> Public health expert and journalist [[David Tuller]], who has said, “Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.” <ref name="Tuller20160201"/> <ref name="MEAction20160201victim"/>

The [[Science Media Centre]] (SMC) was found to have orchestrated and publicised the false narrative in 2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP"/><ref name="SMCUK201302ETE"/> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [https://en.wikipedia.org/wiki/Gaslighting gaslighting] when patients were question the scientific validity of the trial and to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512"/>

[https://en.wikipedia.org/wiki/Peter_Tatchell Peter Tatchell], a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008"/><ref name="TatchellP20160921"/><ref name="TatchellP20160923"/>

No evidence of anyone with ME/CFS being charged by the police with harassment and death threats has come to light.

==Calls to release data==

===Open data commitments===

The study authors have been criticised for failing to follow the requirements of the [[Medical Research Council]] (who provided significant funding for the trial) to release anonymised trial data.<ref name="Schneider20160219comm"/>

The 2012 PACE cost-effectiveness paper<ref name="pace2012CE"/> was published in the journal [[PLoS One]]. That journal requires authors, as a condition of submitting their papers, to agree to release the anonymized trial data underlying the paper's analyses upon request. In November 2015 Professor [[James Coyne]] made a request to the PACE authors on that basis, but the authors treated his request as a Freedom of Information request and refused it.<ref name="Coyne20151204"/><ref name="Coyne20160214"/> However in March 2016 the [[PLoS One]] journal confirmed they had requested the investigators to release the trial data, as they committed to do prior to publication.<ref name="PLOSONE-F10.1371"/><ref name="Coyne20160307"/>

In 2015 Peter White lobbied the UK government through his university QMUK and the [[Science Media Centre]] to restrict the Freedom of Information Act 2000 for universities especially for controversial research and cited the PACE trial and compared ME patients requesting data with "climate change science, and research into the health effects of tobacco".<ref name="SMCUK20131031"/><ref name="PhoenixRisingPWFOI"/>

===Freedom of Information requests===

The PACE trial investigators have been asked for 160 pieces of separate information in 35 Freedom of Information requests since 2011.<ref name="FOI20150318"/> They have dismissed at least three of these claims as "vexatious".<ref name="FOI20151211JC"/><ref name="FOI20151101AS"/><ref name="FOI20150629GM-c"/><ref name="FOI20160309AS"/><ref name="FOI20160329"/>

A ruling by a UK government body, the [https://ico.org.uk/ Information Commissioner's Office] (ICO), on 27 October 2015 ordered [[Queen Mary University of London]] (QMUL, the institutional base of the PACE trial's lead investigator [[Peter White]]) to release the trial data to a patient who had requested it, subject to appeal within 28 days.<ref name="FOI20151027QMUL"/> Three Freedom of Information requests from 2012 and 2013 were included in the ICO's decision.<ref name="FOI20121026"/><ref name="FOI20130903"/><ref name="FOI20131029C"/> An appeal by QMUL was heard by the First-Tier Tribunal on 20-22 April 2016. QMUL responded to a freedom of information request confirming the cost of its legal fees for the tribunal totalled £245,745.27 (around USD350,000).<ref name="johnthejack20160629"/><ref name="MEACTION20160709qmul"/><ref name="EliotSmith20160715"/> The First-Tier Tribunal judgement was published on 16 August 2016, roundly dismissing the appeal by QMUL, and deciding that the PACE trial data should be released.<ref name="FOI20160812"/><ref name="EliotSmith20160816"/> The university has not yet stated whether it will appeal the judgement.<ref name="QMUL20160816"/>

The PACE patient consent form was released through a Freedom of Information request.<ref name="FOI20140324M-b"/>

Dr [[Richard Horton]], editor of [[The Lancet]], stated on 18 April 2011 in a national Australian radio interview: "The Freedom of Information requests and the legal fees that have been racked up over the years because of these vexatious claims has added another £750,000 of taxpayers’ money to the conduct of this study".<ref name="HoopWill20110528"/>

===Data requests from scientists===

Professor [[James Coyne]] has publicly called for the trial data to be released. He has repeatedly criticized the PACE investigators for failing to abide by modern expectations concerning "open data".<ref name="Coyne20151111"/><ref name="Coyne20151202"/><ref name="Coyne20151218"/><ref name="Coyne20151222"/><ref name="Coyne20160102"/><ref name="Coyne20160131"/><ref name="Coyne20160220"/><ref name="Coyne20160309"/><ref name="Coyne20160326"/>

Professor Coyne's own request for the data was dismissed under the Freedom of Information Act by the study authors as "vexatious" and as having an "improper motive".<ref name="FOI20151211JC"/>

Scientists [[Ronald Davis]], [[David Tuller]], [[Bruce Levin]], and [[Vincent Racaniello]] requested the PACE trial data in December 2015.<ref name="openletrQMUL1"/> Their request was rejected by the trial investigators.<ref name="Tuller201601119v"/>. On International ME Awareness day in May 2016 in an interview with an advocate's article called [http://www.occupycfs.com/2016/05/12/pace-gate/ PACE-Gate], Dr Racaniello stated "“I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.” <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref>.

===ME Charities and others calls for data release===

A number of patient charity groups and individuals have called for the release of the PACE data, including some outside the ME/CFS community who advocate "open data" in science. These calls include:

*2016: open letters from two patient charities, in Australia, ME/CFS Australia (SA) Inc and Emerge Australia, calling for the data to be released.<ref name="openletrEmergeAust"/><ref name="openletrMECFSSthAust"/>
*2016: an open letter the European ME Alliance (EMEA) representing patient group charities from 12 European countries (Belgium, Denmark, Finland, Germany, Holland, Iceland, Ireland, Norway, Spain, Sweden, Switzerland and UK), calling for the data to be released.<ref name="openletrEMEA"/>
*2016: an open letter by [[Mark Berry]] of [[Phoenix Rising]], a US based non profit with the largest ME patient forum membership in the world, calling for the data to be released.<ref name="openletrPHOENIX"/>
*2016: open letters from British patient charities [[Action for ME]], [[Invest in ME]], [[ME Association]], [[Tymes Trust]], [[ME Research UK]], [[Hope 4 ME & Fibro NI]], the [[Welsh Association of ME & CFS Support]] and the [[25 Percent ME Group]].<ref name="openletrACTMEUK"/><ref name="openletrIIMElan"/><ref name="openletrIIMEmrc"/><ref name="openletrMEASSUK"/><ref name="openletrTymesTrust"/><ref name="openletrMERESEARCHUK"/><ref name="openletrHOPE4MEFNI"/><ref name="openletrWAMES"/><ref name="openletr25%MEGRP"/>
*2016: an open letter from the Irish ME Trust charity <ref> https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf?oref=e </ref>
*2016: an open letter from a Canadian patient group, the [[National ME/FM Action Network]].<ref name="openletrMEFMANCAN"/>
*2016: open letter from two Belgian patient organisations, ME-Gids.net and WUCB <ref> https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=me-gids-news </ref>
* 2016: an open letter from Dutch patient group, Groep ME-DenHaag/ The Dutch Citizen’s Initiative for ME patients <ref> https://www.facebook.com/GroepMEDenHaag/posts/678816975555397 </ref> and a joint letter from three further dutch patient group charities, ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid<ref> http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf </ref>
*2016: an article, "[https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia]", by [[Leonid Schneider]], an independent science journalist.<ref name="Schneider20160219"/>
*2015: a blog post by Dr [[Richard Smith]], former editor of [[The BMJ]], who said that the PACE authors' institutions were "making a mistake... the inevitable conclusion is that they have something to hide.”<ref name="SmithR20151216"/> and in article for F1000 Research <ref> http://f1000research.com/articles/5-781/v1 </ref>
*2016, [https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/ Release the PACE trial data: My submission to the UK Tribunal], James Coyne, 18 Aug 2016.<ref name="Coyne20160818"/>

A total of 29 patient charity groups from 15 countries wrote in support of releasing the anonymized PACE trial data.<ref name="EllisC20160125"/><ref name="EllisC20160829"/>

A ME charity polled on the question "Should or should not the anonymised data from the PACE trial be released for independent analysis?" As at 17 March 2016, 1391 voters took part and 99% (1378 voters) voted for 'Should be released'. 0% (5 voters) voted for 'Should not be released' <ref> http://www.meassociation.org.uk/2016/03/pace-trial-data-release-our-march-website-poll-gathers-1322-votes-so-far-16-march-2016/ </ref>.

Both cofounders of [https://en.wikipedia.org/wiki/Retraction_Watch Retraction Watch], [https://journalism.nyu.edu/about-us/profile/ivan-oransky-md/ Ivan Oransky] and Adam Marcus, added their weight behind patients in the refusal of the PACE trial investigators to release the anonymised data in article in STAT News feature 'The Watchdogs Keeping an eye on misconduct, fraud, and scientific integrity' [https://www.statnews.com/2015/12/23/sharing-data-science/ To keep science honest, study data must be shared] and concluded "when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science".<ref name="GelmanA20151223"/>

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]],<ref name="WSJ20160307"/>. <ref> http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/ </ref>.

==Release of Data==

[[Alem Matthees]] , an Australian ME sufferer, submitted a FOIA request to the PACE trial authors who were ordered to provide the requested data by the Information Commissioners Office. This decision was appealed by them to the Information Tribunal and was heard on April 20th 2016 at a three day hearing.

===Information Tribunal===

Mr [[Alem Matthees]] original Freedom of Information Act 2000 request to QMUL [https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-74511 Selected data on PACE Trial participants] was submitted on 24 March 2014. QMUL refused to release the requested data and Mathees complained to the Information Commissioners Office. The [https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf Information Commissioners decision] was made on 27 October 2015 and concluded that QMUL should release the data.

The PACE investigators appealed and the [https://valerieeliotsmith.files.wordpress.com/2016/04/002-231115-notice-of-appeal.pdf QMUL's Notice of Appeal] was submitted on 23 November 2015.<ref> https://valerieeliotsmith.com/2015/11/26/queen-mary-university-of-london-to-appeal-information-commissioners-decision-on-disclosure-of-pace-trial-data/</ref>

[https://valerieeliotsmith.files.wordpress.com/2016/04/004-120116-ic-response.pdf The Information Commissioners response to the Tribunal as First Respondent] of 12 January 2016 and [https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Mr Alem Mathees Main response to Tribunal as Second Respondent] was also submitted to the Tribunal for the three day hearing on 20, 21 and 22nd April 2016.

[http://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Rights Tribunal Judgement] was finally published on 16 August 2016. <ref name="EliotSmith20160816"/><ref> https://dl.dropboxusercontent.com/u/23608059/OCR-Queen%20Mary%20University%20of%20London%20EA-2015-0269%20%2812-8-16%29.pdf</ref> The Tribunal upheld the original ICO decision and rejected the appeal by the PACE investigators and ordered QMUL to release the anonymised data to Mr Matthees.

The tribunal took evidence under the normal rules of court. The tribunal also concluded of the expert witness for the PACE authors that "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder” and "clearly in our view had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation, with no actual evidence to support his assertions or counter the respondents arguments." The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”. <ref name="MEAction20160816"/>

The decision noted in the evidence that "Contrast instead Professor Chalder when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. There is no evidence either of a campaign to identify participants nor even of a risk of an 'insider threat'.”

Moreover, regarding the independent [[Cochrane]] review it was admitted in the tribunal that "Professor Chalder states that disclosure to the [[Cochrane]] review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Additionally, a UK ME sufferer submitted a FOI request in June 2016 and established that the PACE trial investigator's university paid £245,745.27 for legal fees to defend their case in the tribunal against the original ICO decision. <ref> http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/?mc_cid=4073cfdba0&mc_eid=2db0572c47 </ref> <ref> https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public </ref>

The lead PACE investigator's university issued a statement the same day stating "We are studying the decision carefully and considering our response" <ref> http://www.qmul.ac.uk/media/news/items/smd/179331.html </ref>. An open letter in support of Alem Matthees was sent to the university and signed by Dr [[Ronald Davis]], Dr [[Jonathan Edwards]], Dr [[Rebecca Goldin]], Dr [[Bruce Levin]], Dr [[Zaher Nahle]], Dr [[Vincent Racaniello]], Dr [[Charles Shepherd]] and Dr [[John Swartzberg]] strongly urging them to not appeal further.

The ME community through MEAction posted a [http://www.meaction.net/2016/09/21/a-plea-for-decency-to-white-chalder-sharpe/ 'Plea for Decency to White, Chalder & Sharpe'] with a plea to "pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals." and to "End this tragedy now.".

QMUL did not appeal and released the data to Matthees. <ref> http://www.qmul.ac.uk/media/news/items/smd/181216.html </ref>. It was uploaded online <ref> https://twitter.com/CoyneoftheRealm/status/778643034800005120 </ref> <ref>https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0 </ref> <ref> https://sites.google.com/site/pacefoir/pace-ipd_foia-%20qmul-%202014-f73.xlsx </ref>.

===Results of Reanalysis===

Virology blog published the re-analysis on 21 September [http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ No ‘Recovery’ in PACE Trial, New Analysis Finds] and concluded " The results should put to rest once and for all any question about whether the PACE trial’s enormous mid-trial changes in assessment methods allowed the investigators to report better results than they otherwise would have had. While the answer was obvious from Dr. Tuller’s reporting, the new analysis makes the argument incontrovertible."

The full re-analysis was published as '[http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data]' and was conducted by [[Alem Matthees]], [[Tom Kindlon]], Carly Maryhew, Philip Stark and [[Bruce Levin]] and stated "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold.".

On 19 August 2016 [[The Centre for Welfare Reform]] also published an update, to its earlier 64 page report from April 2016, called [http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter Major breakthrough on PACE trial]<ref name="CntrWelfRefm20160819"/>.

[http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& 'A critical commentary and preliminary re-analysis of the PACE trial'] was published in December 2016 in the Journal of '[[Fatigue: Biomedicine, Health & Behavior]]' by Dr [[Carolyn Wilshire]], [[Tom Kindlon]], [[Alem Matthees]] and [[Simon McGrath]] which found that "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments"<ref>http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20& </ref> <ref>http://www.meaction.net/2016/12/14/the-pace-trial-where-recovery-doesnt-mean-getting-your-health-back/ </ref>.

[https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 'A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White'] was published by Dr [[Carolyn Wilshire]], [[Tom Kindlon]] and [[Simon McGrath]] in response to the PACE authors reply to their original publication <ref> https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017 </ref>. Wilshire et al disproved again the PACE trials misleading claims as recovery was a strong claim and did not adhere to the core meaning of the word, no evidence that the original protocol specified definition was too stringent and absolute recovery rates from other studies were not legitimate source of support for the recovery definition used. It reinforced the original conclusion that "The PACE trial provides no evidence that CBT and GET can lead to recovery from CFS. The recovery claims made in the PACE trial are therefore misleading for patients and clinicians".

Instead of engaging with critics by releasing other additional requests for data, the PACE trial authors updated their guidelines in January 2017 for those requesting access to the PACE trial data which further restricted access by requiring "formal agreement" with "precise analytic plans, and plans for outputs" <ref> http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE%20Data%20Sharing%20Policy.pdf. </ref>. Prof [[James Coyne]] commented that it is "a ruse to trap the unwary in endless haggling and appeal, while protecting the PACE investigators from the independent reanalysis of the claims, which they have already declared poses a reputational risk to them".<ref name="Coyne20170318"/>

===Scientific and Media response===

Despite patients and critics not having access to the [[Science Media Centre]] the media coverage especially outside the UK was extensive.

* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study] .<ref name="RetractWatch20160817"/>
* 18 August 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 22 August 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref> http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref>
* 19 August 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM"/>
* 19 August 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG"/>
* 19 August 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial]
* 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822"/>
* 27 August 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827"/>
* 30 August 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you]
*6 September 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html?utm_hp_ref=blogs Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails]
*12 September 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study]
* 21 September 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back]
*21 September 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9?utm_source=feedburner&amp%3Butm_medium=referral&utm_medium=feed&utm_campaign=Feed%3A+businessinsider+(Business+Insider)?r=US&IR=T How millions of patients with a crippling, misunderstood disease were misled by bad science]/
*21 September 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/
*22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/
* 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown]
* 23 September 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data]
*23 September 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals]
*24 September 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed]
*26 September 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is. ]
*28 September 2016 - The Times [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’]
*29 September 2016 - BMJ [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment]
*2 October 2016 - The Canary [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released]
*6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?]
*6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham]
*7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy]
*9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?]
*17 October 2016 - The Telegraph [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts ]
*20 October 2016 - Hippocratic Post [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT]
*19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results]
* 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]]
* 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller
*2 November 2016 - The Times [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end]
* 17 August 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, 17 Aug 2016.<ref name="MEAction20160817qmul"/>
* 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref> https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref> <ref> https://twitter.com/pathcath/status/819232955155488769 </ref>
* 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)]
* 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi]
* 17 January 2017 - News.com Australia [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery]
*19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated
* 8 February 2017 - New Scientist [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine ] and response by PACE author. <ref> https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected </ref>.
* 20 February 2017 - [https://en.wikipedia.org/wiki/Carte_Blanche_(TV_series) Carte Blanche] South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing]
* 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors <ref> http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref>
* 18 March 2017 - The New York Times (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome]
* 21 March 2017 - The Guardian [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?]
* 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk ] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful" ]
*23 March 2017 - The Conversation (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref> https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref>
*27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]]
*29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]]
*26 March 2017 - Jerusalem Post, Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome]
*27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]]
* 4 April 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall
*30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54)
* 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709"/>
* 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation)
*3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']
* 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm%3Futm_source%3Ddlvr.it%26utm_medium%3Dtwitter&edit-text= CVS / ME - More uncomfortable (on) truths]
* 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm?utm_source=dlvr.it&utm_medium=twitter CVS/ME – de non-dialoog] /
* 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/?utm_source=dlvr.it&utm_medium=twitter 'Dags att förkasta PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study]
* 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon']
* 5 Oct 2017 - Metro, Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg.
* 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet]
*13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref> https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>.
*23 October 2017 - Morning Star [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals]
*2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film)
*10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up]
*3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others <ref> https://www.nature.com/articles/d41586-018-01285-x</ref> <ref> https://www.nature.com/articles/d41586-018-03055-1</ref>.
*7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film)
*8 February 2018 - The Herald [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]

'''Queen Mary University of London/Student Union - The Print Newspaper'''

*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/

'''Blogs'''

*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*The Faculty Lounge by [[Steven Lubet]] - [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful]
*Academic Health Economist - [https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/ Data sharing and the cost of error]
* BMJ - [http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork [[Simon McGrath]]: PACE trial shows why medicine needs patients to scrutinise studies about their health]
*Intelligent Medicine (Podcast) - [http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/ Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back] (20.53)
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]

'''Media Response by PACE authors'''

*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal. [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref> https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 - Discover Magazine [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)

'''Scientific Journals'''

* 5 October 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* 15 September 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* 1 November 2016 - Dr [[Keith Geraghty]] pubished in The Journal Of Health Psychology [http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf ‘PACE-Gate’: When clinical trial evidence meets open data access]

Some of the PACE authors had a [http://journals.sagepub.com/doi/full/10.1177/1359105316688953 'Response to the editorial'] in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

* 10 January 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology [https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf 'Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported']
* 1 March 2017 - [[Luis Nacul]], [[Eliana Lacerda|Eliana M Lacerda]], [[Caroline Kingdon|Caroline C Kingdon]], [[Hayley Curran]], [[Erinna Bowman|Erinna W Bowman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317695803 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?']
* 7 March 2017 - Prof [[Steven Lubet]], Law Professor at NorthWestern University published in the Journal of Health Psychology [http://journals.sagepub.com/doi/abs/10.1177/1359105317697324?journalCode=hpqa 'Investigator bias and the PACE trial']
* 20 March 2017 - [[Tom Kindlon]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317697323?journalCode=hpqa 'Do graded activity therapies cause harm in chronic fatigue syndrome?']
* 24 March 2017 - Dr [[Carolyn Wilshire]] in the Journal of Health Psychology [https://www.researchgate.net/publication/315574048_The_problem_of_bias_in_behavioural_intervention_studies_Lessons_from_the_PACE_trial 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial']
* 24 March 2017 - Prof [[Jonathan Edwards]] [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 'PACE team response shows a disregard for the principles of science']
* 9 April 2017 - Dr [[Charles Shepherd]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703786 ‘PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results’]
* 10 April 2017 - [[Keith Petrie]] and [[John Weinman]] [http://journals.sagepub.com/doi/full/10.1177/1359105317703789 'The PACE trial: It’s time to broaden perceptions and move on'] (see also response to this on 14 June by Lubet and 27 June by Agardy.
* 27 April 2017 - Dr [[Mark Vink]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703785?journalCode=hpqa#.WQHuLNbj4f4.twitter 'PACE trial authors continue to ignore their own null effect']
* 27 April 2017 - Dr [[David Tuller]] [http://journals.sagepub.com/doi/abs/10.1177/1359105317703788?journalCode=hpqa#.WQHuZsKSA7Y.twitter 'Once again, the PACE authors respond to concerns with empty answers']
*12 May 2017 - Karen Kirke [http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 'PACE investigators’ response is misleading regarding patient survey results']
*12 May 2017 - Bart Stouten [http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa 'PACE-GATE: An alternative view on a study with a poor trial protocol\]
*18 May 2017 - Prof [[Keith Laws]] [http://journals.sagepub.com/doi/full/10.1177/1359105317710246 "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"]
*29 May 2017 - Dr [[Ellen Goudsmit]] and [[Sandra Howes]] [http://journals.sagepub.com/doi/10.1177/1359105317707216 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment']
* 14 June 2017 - Prof [[Steven Lubet]] [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 'Defense of the PACE trial is based on argumentation fallacies']
* 14 June 2017 - Dr [[Keith Geraghty]] [http://journals.sagepub.com/eprint/iXpCNJk6zd34nFpSy4NK/full 'Further commentary on the PACE trial: Biased methods and unreliable outcomes']
* 19 June 2017 - [[Graham McPhee]] [http://journals.sagepub.com/doi/full/10.1177/1359105317707215 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome'] with accompanying video [https://www.youtube.com/watch?v=bPxhzMtKDnQ 'Objective Evidence & CFS']
* 27 June 2017 - Dr Susanna Agardy [http://journals.sagepub.com/doi/full/10.1177/1359105317715476 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman']
* 16 Aug 2017 - Meg Allen and Helen Spandler published [https://link.springer.com/article/10.1057/s41285-017-0047-0 'Contesting the psychiatric framing of ME/CFS'] in Social Theory and Health (examined the PACE Trial authors psychiatrisation of ME/CFS and responsibility for epistemic injustice and discrimination of sufferers).
* 8 Sept 2017 - [http://www.oatext.com/the-effects-of-therapies-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-should-be-assessed-using-objective-measures.php 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures']

===Journal of Health Psychology 'Special Issue on the PACE Trial'===

A special edition of the Journal of Health Psychology was published in 31 July by the editor, Dr David Marks with an editorial - [http://journals.sagepub.com/doi/full/10.1177/1359105317722370 'Special Issue on the PACE Trial'] and accompanying all [http://journals.sagepub.com/toc/hpqa/22/9 20 Editorials & Commentaries] <ref> http://journals.sagepub.com/toc/hpqa/22/9 </ref>.

A press release was put out for 31 July called [https://twitter.com/newhealthpsych/status/890828361387450369 'The PACE Trial: The Making of a Medical Scandal'] <ref> https://twitter.com/newhealthpsych/status/891389836954931200</ref> <ref> http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html </ref> <ref>http://www.meaction.net/2017/07/30/the-pace-trial-the-making-of-a-medical-scandal/</ref> <ref>https://jcoynester.wordpress.com/2017/07/29/pace-gate-the-making-of-a-medical-scandal</ref>.

Prof Coyne explained in his blog of the [https://jcoynester.wordpress.com/2017/07/30/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled/ 'Last ditch attempt to block publication of special issue of Journal of Health Psychology foiled'] and that anonymous and powerful PACE proponents made threats to the publisher of JHP, SAGE Publications, that made them reluctant to publish the special edition. He explained in his blog "Some threats were made to Sage Publications, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As often happens with these kind of pressures, we weren’t told the identity of the complainant. It was clear that whoever s/he was, this person was powerful in being able to grind to a halt of making the special issue available, complete with the introductory editorial that was not previously available.'"

It transpired that "When the effort to block publication of the special issue failed, the PACE investigators got criticism posted at Science Media Centre." <ref> https://jcoynester.wordpress.com/2017/08/01/part-2-what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial/ </ref>.

The [[Science Media Centre]] put out its own "expert reaction" press release to UK journalists minutes before the special edition was available to spin the story about the PACE scandal and distract and refocus away from the central problems with the scandal <ref> https://web.archive.org/web/20170731134503/http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/</ref>. The Science Media Centre ignored the glaring problems and instead made personal attacks agains the authors.

Dr [[David Tuller]] deconstructed "these rather pathetic efforts at defending the indefensible" from the Medical Research Council (MRC), an unnamed University of Oxford spokesperson, and Malcolm Macleod in [http://www.virology.ws/2017/08/02/trial-by-error-the-science-media-centres-desperate-efforts-to-defend-pace/ 'The Science Media Centre’s Desperate Efforts to Defend PACE']. It was stated by a whistleblower that [[Michael Sharpe]] was the person who complained to the Journal to block publication <ref> https://twitter.com/johnthejack/status/895013220875980800 </ref>. This was published on social media by a ME advocate and although unverified, due to its importance as it was the principal author of PACE trial, it is being documented and referenced here.

The Times (UK) published two articles [https://www.thetimes.co.uk/edition/news/scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-slk0cv5lj 'Scientists trade insults over myalgic encephalomyelitis (ME) study'] and [https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3 'A battle of prescriptions'] covered the issue but with a spin and focus on emails and resignations rather than the central issues in the Special Issue on the PACE trial scandal <ref> http://www.meassociation.org.uk/2017/08/the-times-scientists-trade-insults-over-myalgic-encephalomyelitis-me-study-01-august-2017/ </ref> <ref> http://www.meassociation.org.uk/2017/08/the-times-behind-the-story-a-battle-of-prescriptions-01-august-2017/</ref>. The impact of the decades long denial by the PACE authors of the disability could be seen in the Express article [http://www.express.co.uk/life-style/health/838619/chronic-fatigue-syndrome-real-me-yuppie-flu-symptoms-treatment-cure-controversy 'Is chronic fatigue syndrome real? Life-threatening condition can leave sufferers bed bound']. The Daily Mail reported on it with [http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX 'Angry scientists throw insults at each other over the results of a £5 million taxpayer-funded study into chronic fatigue syndrome']

US local media reported on it as [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study']. Other international media reporting it including the Metro Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/actueel/2017/07/wetenschap-valt-door-de-mand 'Wetenschappers vallen door de mand']. Forskning (Research) of Norway reported it as [http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter 'Hard kritikk av stor ME-studie'/'Hard criticism of major ME study'] . Seeker published on both the PACE trial scandal and the 2017 Stanford Cytokine study and concluded "The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said." <ref> https://www.seeker.com/health/a-new-clue-is-helping-to-solve-the-mystery-behind-chronic-fatigue-syndrome </ref>.

Journalist Jerome Burns in the Daily Mail wrote the article [http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4qTmFPJ9C 'Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine' ] . David Tuller commented on social media "Amazing to see a fair story on ME like this in the UK press. Seems like the PACE story has broken through" as it was a breakthrough in the UK media because of the influence of the PACE authors and the [[Science Media Centre]] <ref> https://twitter.com/MBVanElzakker/status/897337300971081728 </ref>.

The iNews reported it as [https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ 'You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study'] with a prominent and groundbreaking comment from Dr David Marks in the national UK media "The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”.

The Medical Independent in Ireland published an article referencing Dr [[Keith Geraghty]] and [[Nasim Marie Jafry]]'s work with a literary take on the changing narrative of ME from neurological to biopsychosocial and culminating in the PACE trial and a whole special issue dedicated to the scandal <ref> http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease </ref>.

The President of the [[IACFS/ME]] Prof [[Fred Friedberg]] stated of the Special Edition "the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery”" and "This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS". He continued "misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community" as far as the United States <ref> http://www.twitlonger.com/show/n_1sq55c3</ref>. In contrast a separate investigation into research funding it was established Peter White as receiving the most research funding and a near monopoly from the UK government and taxpayers out of all researchers despite protests from patients <ref> http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf</ref> .

The Journal of Health Psychology August Special Edition with all articles is also available on [https://www.ncbi.nlm.nih.gov/pubmed?term=Journal+of+health+psychology+aug+PACE&cmd=DetailsSearch PubMed].

===Learn more===

*2016, [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back], [[Julie Rehmeyer]], ''Stat News'', 21 Sep 2016.<ref name="Rehmeyer20160921"/>

== Reaction by Scientific, Medical and ME Communities==

[[Mary Dimmock]] wrote a comprehensive report [https://www.dropbox.com/s/kbjmmuc1utx67md/Concerns%20with%20ME%20Evidence%20Based%20Guidance%20January%202018.pdf?dl=0 'Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry'] in January 2018 that details how the PACE trial and similar studies based on flawed science led to evidence-based reviews and clinical guidance recommending harmful treatments for ME patients <ref> https://www.meaction.net/2018/02/05/the-failure-of-clinical-guidance-for-people-with-me/</ref>.

===Agency for Healthcare Research and Quality (AHRQ) amendment, US===
The US government agency called the [[Agency for Healthcare Research and Quality]] (AHRQ) revised its earlier recommendations about found that when studies of CBT and GET, including PACE, that used the Oxford Criteria were excluded, there was no evidence for graded exercise and only weak evidence for CBT.<ref name="MEACTION20160818ahrq"/> [[Mary Dimmock]] led the way on this issue with AHRQ and co-authored with [[Jennie Spotila]] [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions.]

===PLOS Expression of Concern===

Prof James Coyne had requested anonymised data in 2015 from the PACE trial authors from the Cost Effectiveness paper. He pursued this request throughout 2015 and 2016 but was also refused as "vexatious". After 18 months, PLOS issued an [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 Expression of Concern] on May 2nd 2017. It stated "We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article <ref> http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 </ref>. The Editors of PLOS One, Iratxe Puebla and Joerg Heber, wrote in PLOS One Blog "Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern to alert readers that the data are not available in line with the journal’s editorial policy" <ref>http://blogs.plos.org/everyone/2017/05/02/data-sharing-in-clinical-research/ </ref>. Retraction Watch reported on the development <ref> http://retractionwatch.com/2017/05/02/plos-upgrades-flag-controversial-pace-chronic-fatigue-syndrome-trial-authors-surprised/</ref>

===Centres for Disease Control & Prevention (CDC), US===

David Tuller reported in July 2017 [http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET] the [[CDC]] updated their treatment recommendations and "the agency has “disappeared” all mention of CBT and GET as treatment or management strategies." It was reported by Tuller that the key members of the PACE trial had a long history with the CDC and "For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website." The removal of CBT and GET has been "heralded as an important" by patient charities <ref> http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ </ref>. David Tuller in Undark reported on this development as [https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website]. <ref> https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ CDC Removes Reference to Disputed ME/CFS Therapies From Website </ref>.

In September, [[David Tuller]] and [[Julie Rehmeyer]] wrote an article in STAT exploring [https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ 'Why did it take the [[CDC]] so long to reverse course on debunked treatments for chronic fatigue syndrome?']. NPR reported on the change in the CDC recommendations and that exercise can make the disease worse and criticised the seminal paper Sir [[Simon Wessely]] from 1989 that led to exercise as a treatment and the PACE trial. <ref> http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better </ref>. The New York Times published an article 'New Recognition for Chronic Fatigue Syndrome'] that longstanding advice to exercise was now recognised as not only ineffective but counterproductive and referred to the CDC and NICE decision to review the recommendations <ref>https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html?smid=tw-share </ref>.

===UK reaction from the Journals - Lancet, Psychological Medicine and Guideline Provider - NICE===

The UK medical and scientific establishment have been obstinate in changing their position to reflect the flaws of the PACE trial as the PACE trial investigators are highly influential and senior members of the UK establishment. The Lancet have refused to retract the study as yet. Psychological Medicine have also refused to retract the study as well.

The controversial [[NICE guidelines]] were challenged by patient groups after the PACE trial was discredited by way of petitions and challenges by ME patient groups in 2017. ME sufferers have taken other actions due to the UK medical establishment intransigence of acknowledging the issues.

=== Additional Scientific Publications===

BMC Psychology will publish [https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT 'Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'] by Drs Carolyn Wilshire, David Tuller, Tom Kindlon, Alem Matthees, Keith Geraghty, Robert Courtney and Bruce Levin. It concluded these findings raise serious concerns about not only the PACE trial but the robustness of the claims made about the efficacy of CBT and GET as a whole.

===Complaint to medical regulator===

===Further FOIA requests===

Further Freedom of Information Act 2000 requests have been made to the PACE trial team at Queen Mary University of London (QMUL). The PACE authors have continued to refuse using various reasons including refusing an internal review and these decisions have been appealed again to the Information Commissioners Office. On 20 February 2018 the Information Commissioners Office ruled that the the university should release the Trial Steering Committee minutes and the Trial Management Group minutes. The PACE team and the university surprisingly repeated its earlier arguments to the ICO that the criticism is unwarranted and the trial is not controversial among the majority of scientists in the field and that there is a history of the researchers being personal abused, their integrity being questioned and even as far as saying they may risk threats of physical violence. The Information Tribunal in August 2016 in its court decision rejected these serious but unfounded assertions. The complainant, an ME sufferer, argued that this data should be released given the previous submissions by the PACE authors were unreliable and in the intervening period the scientific community in addition to patients had cast further concerns about the trial. The Commissioner found that the public interest favours publishing the anonymised information and ruled that the university should release the data and has 35 days to do so. <ref> https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258289/fs50687719.pdf</ref>. <ref> https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO%20decision%20minutes.pdf?dl=0</ref>.

=== Second Parliamentary debate on PACE Trial===

It was announced on 6 February 2018 by Carol Monaghan MP that a Westminster Hall debate would be held on the PACE trial called 'PACE trial and its effect on people with ME' <ref> http://www.carol.monaghan.scot/2018/02/07/pace-trial/</ref>. This was exactly five years to the date of the last PACE trial debate in 2013. Scottish media reported on it and The Herald published [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ 'Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial'] . On the day of the debate The National reported it as [http://www.thenational.scot/politics/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ 'SNP's Carol Monaghan to lead debate on treatment for ME patients]'.

The 'PACE Trial and its effect on people with ME' debate took place on 20 February 2018 at Westminster Hall. The debate is available on [http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 UK Parliament TV] and is available on [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME Hansard].<ref name="UKParl20180220-video"/><ref name="UKParl20180220-transcript"/> The debate is also available on YouTube.<ref name="UKParl20180220-video2"/><ref name="UKParl20180220-video3"/><ref name="UKParl20180220-video4"/>

It was concluded by Carol Monaghan MP "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."

ME charities Invest in ME, ME Association and others commented on the debate <ref> http://www.investinme.org/IIMER-Newslet-1802-02.shtml </ref> <ref> http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/ </ref> <ref> https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</ref> .

ME advocates have produced an analysis of Caroline Dinenage MP (Department of Health and Social Care) who responded on behalf of the government with mixed and inconsistent responses but continued support for the PACE trial. <ref> https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/ </ref>.

==Quotes from PACE trial critics==

===Professor [[Vincent Racaniello]]===
[[Vincent Racaniello]] is a virologist at Columbia University in New York in the [[United States]].

<blockquote>"This is a flawed study, it has to be fixed and people are being harmed by it."<ref name="Tuller20160710"/></blockquote>

<blockquote>"... multiple flaws that are inexcusable."<ref name="Tuller20160710"/></blockquote>

<blockquote> "In short, the PACE study is a sham, with meaningless results. In this case, the emperor truly has no clothes. Dr. Horton and his editorial team at The Lancet are stark naked."<ref>http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/</ref></blockquote>

<blockquote> "I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry." <ref> http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ </ref></blockquote>

===[[Trevor Butterworth]]===
Trevor Butterworth is the Editor of 'Sense About Statistics,' an online collaboration between the American Statistical Association and Sense About Science USA.<ref name="ButterworthT20160321"/>

<blockquote>"...the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked. There is really not a lot that can be said to mitigate that; it’s a terminal prognosis."</blockquote>

===[[James Coyne|Professor James Coyne]]===
Professor Coyne is Professor of Health Psychology, University Medical Center, Groningen and University of the Netherlands; Distinguished Visiting Professor at the Institute for Health Policy, Rutgers, the State University of New Jersey; and Professor Emeritus of Psychology in the Department of Psychiatry, University of Pennsylvania. He is one of the most cited psychologists in the academic literature.

<blockquote>"The data presented are uninterpretable. We can temporarily suspend critical thinking and some basic rules for conducting randomized trials (RCTs), follow-up studies, and analyzing the subsequent data. Even if we do, we should reject some of the interpretations offered by the PACE investigators as unfairly spun to fit what [is] already a distorted positive interpretation of the results."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The self-report measures do not necessarily capture subjective experience, only forced choice responses to a limited set of statements."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"One of the two outcome measures, the physical health scale of the SF-36 requires forced choice responses to a limited set of statements selected for general utility across all mental and physical conditions."<ref name="Coyne20151029po"/></blockquote>

<blockquote>"The validity [of the] other primary outcome measure, the [[Chalder fatigue scale|Chalder Fatigue Scale]] depends heavily on research conducted by this investigator group and has inadequate validation of its sensitivity to change in objective measures of functioning."<ref name="Coyne20151029po"/></blockquote>

Professor Coyne gave a public talk criticising the PACE trial in Edinburgh in November 2015. Video footage is available<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/>, as are a slide show<ref name="Coyne20151116-ss"/>, a full<ref name="Coyne20151116-tf"/> and an edited transcript<ref name="Coyne20151116-ts"/><ref name="Coyne20151116-tl"/> and an audio recording.<ref name="Coyne20151116-au"/>

He spoke again about the PACE study in Belfast in February 2016 where he described it as "a wasteful trainwreck of a study".<ref name="Coyne20160208-v"/><ref name="Coyne20160208-ss"/>

Professor Coyne has questioned whether the PACE trial paper could ever have been properly peer-reviewed, given the large number of study authors and the small world of British science.<ref name="Coyne20151125"/>

===Professors [[James Coyne]] and [[Keith Laws]]===
Professor Coyne and Professor Laws of the University of Hertfordshire have criticised, in a joint letter to Lancet Psychiatry, the long-term follow-up analysis of the PACE trial that was published in 2015.<ref name="CoyneLaws20160118"/> Referring to the results of the study as a whole, they said:

<blockquote>"There are no group differences, and the overall mean short-form 36 (SF-63) physical functioning score is less than 60. It is useful to put this number in context. 77% of the PACE trial participants were women, and the mean age of the trial population was 38 years, with no other disabling medical conditions. Patients with lupus have a mean physical functioning score of 63, patients with class II congestive heart failure have a mean score lower than 60, and normal controls with no long-term health problems have a mean score of 93."</blockquote>

===[[Ronald Davis|Professor Ronald Davis]]===
Professor Ronald Davis is a world-famous geneticist at Stanford University, known for work that enabled the Human Genome Project.

<blockquote>“I’m shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”<ref name="Tuller20151021"/></blockquote>

===[[Jonathan Edwards|Emeritus Professor Jonathan Edwards]]===
Professor Edwards, of University College London, is internationally known for his pioneering work in establishing B-cell depletion therapy as an effective treatment for rheumatoid arthritis.

<blockquote>“It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible....Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”<ref name="Tuller20151021"/></blockquote>

===Professor [[Rebecca Goldin]]===
Professor Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org (USA).<ref name="GoldinR20160321"/>

<blockquote>"The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."</blockquote>

<blockquote>"It seems that the best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start."</blockquote>

===[[Ellen Goudsmit|Dr Ellen Goudsmit]]===
Dr Goudsmit is a retired health psychologist who has published a number of criticisms of the PACE trial.

<blockquote>"The PACE trial was scientifically extremely poor"<ref name="GoudsmitE20141213"/></blockquote>

<blockquote>"A treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke"<ref name="GoudsmitE20160219"/></blockquote>

===[[Leonard Jason|Professor Leonard Jason]]===
Leonard Jason is a professor of psychology at DePaul University in Chicago, Illinois, and director of its Center for Community Research.

<blockquote>“The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”<ref name="Tuller20151021"/></blockquote>

<blockquote>"My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes."<ref name="JasonLA201702"/></blockquote>

===[[Bruce Levin|Professor Bruce Levin]]===
Professor Levin is a professor of biostatistics at Columbia University and an expert in clinical trial design.

<blockquote>“To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”<ref name="Tuller20151021"/></blockquote>

===[[Arthur Reingold|Professor Arthur Reingold]]===
Professor Reingold is Head of Epidemiology at the University of California, Berkeley.

<blockquote>“Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”<ref name="Tuller20151021"/></blockquote>

===[[Charles Shepherd|Dr. Charles Shepherd]]===
Dr Shepherd, medical advisor to the [[ME Association]], has criticised the trial's long-term follow-up analyses:

<blockquote>"Without robust objective evidence relating to improvement and recovery, the ME patient community will continue to regard the PACE trial as a tremendous waste of research funding money".<ref name="Shepherd20160118"/></blockquote>

===Dr [[David Tuller]]===
Dr Tuller is is academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He was a reporter and editor for 10 years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. He has written extensively about the PACE trial.<ref name="viroblogMECFS"/>

<blockquote>"The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already 'recovered' on those indicators–even before any treatment. In fact, 13 percent of the study sample was already 'recovered' on one of these two measures at the start of the study."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the 'therapy' and 'treatment' helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee 'based on the best available evidence.' The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE team changed all the methods outlined in its protocol for assessing the primary outcomes of physical function and fatigue, but did not take necessary steps to demonstrate that the revised methods and findings were robust, such as including sensitivity analyses. The researchers also relaxed all four of the criteria outlined in the protocol for defining 'recovery.' They have rejected requests from patients for the findings as originally promised in the protocol as 'vexatious.'"<ref name="Tuller20151021"/></blockquote>

<blockquote>"The PACE claims of successful treatment and 'recovery' were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial information—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable."<ref name="Tuller20151021"/></blockquote>

<blockquote>"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the 'conflicts of interest' sections of the published papers."<ref name="Tuller20151021"/></blockquote>

<blockquote>"The Lancet Psychiatry follow-up had null findings: Two years or more after randomization, there were no differences in reported levels of fatigue and physical function between those assigned to any of the groups... Yet the authors, once again, attempted to spin this mess as a success."<ref name="Tuller20160119a"/></blockquote>

<blockquote>"This study is a piece of crap."<ref name="Tuller20160710"/></blockquote>

===Dr [[David Tuller]] and [[Julie Rehmeyer]]===
Public health expert Dr Tuller and ME/CFS patient [[Julie Rehmeyer]] are both journalists who have written critically about the PACE authors' claims regarding the safety of [[Graded exercise therapy]]:<ref name="Tuller20160107"/>

<blockquote>"The study’s primary case definition for identifying participants, called the Oxford criteria, was extremely broad; it required only six months of medically unexplained fatigue, with no other symptoms necessary. Indeed, 16% of the participants didn’t even have exercise intolerance—now recognized as the primary symptom of ME/CFS".</blockquote>

<blockquote>"After the trial began, the researchers tightened their definition of harms, just as they had relaxed their methods of assessing improvement."</blockquote>

<blockquote>"[T]he study was unblinded, so both participants and therapists knew the treatment being administered. Many participants were probably aware that the researchers themselves favored graded exercise therapy and another treatment, cognitive behavior therapy, which also involved increasing activity levels. Such information has been shown in other studies to lead to efforts to cooperate, which in this case could lead to lowered reporting of harms."</blockquote>

===[[Julie Rehmeyer]]===

<blockquote>"... one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist"<ref name="Rehmeyer20160808"/></blockquote>

<blockquote>"... an object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically and in public health."<ref name="Rehmeyer20160808"/></blockquote>

===Dr [[Michael VanElzakker]]===

<blockquote>"Subjective measures of sick people before & after they are repeatedly told 'You're not sick' is a social psych study, not a clinical trial."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"In 5 years, the UK medical establishment's obdurateness on ME/CFS and PACE will be taught in medical schools as a cautionary tale."<ref name="VanElzakker2016"/></blockquote>

<blockquote>"The PACE trial is a classic case of bad science - researchers are determined to support their theory, even if the data do not."<ref name="VanElzakker2016"/></blockquote>

===Dr [[David Marks]]===

Editor of the [[Journal of Health Psychology]]

""The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”. <ref> https://inews.co.uk/essentials/news/health/scientists-furious-row-pace-trial-journal-special-edition/ </ref>.

==Principal investigators and researchers==

The principal investigators on the PACE trial are Professors [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]]. Additional authors on the 2011 Lancet paper of the [[PACE Trial Management Group]] are Kimberley Goldsmith, Anthony Johnson, Laura Potts, Rebecca Walwyn, Julia DeCesare, Hannah Baber, M. Burgess, L.V. Clark, D.L. Cox, [[Jessica Bavinton]], Brian Angus, [[Gabrielle Murphy]], [[Maurice Murphy]], H. O'Dowd, D. Wilks, and [[Paul McCrone]].

The Trial Steering Committee members included [[Mansel Aylward]].

==List of PACE trial publications==

===2003: Trial Registry. BioMed Central. ISRCTN54285094===
There is a currently published trial register<ref name="pace2003trialregistry"/> and there is a version of the register that is no longer available on the web but has been archived.<ref name="pace2003trialregistryarchive"/> Both versions contain slightly different details. The archived version contains the details of the trial's pre-specified endpoint analyses.

===2006: Final protocol version 5.0===
This full version of the study protocol, which includes trial materials such as questionnaires and consent forms, was never officially published.<ref name="pace2006protocolv5"/>

===2007: PACE trial protocol===
BMC Neurology published the trial's planned methodology, including its planned analyses.<ref name="pace2007protocol"/>

===2011: Main trial outcomes===
The trial's main outcomes, and some selected secondary outcomes, were reported in The Lancet.<ref name="pace2011a"/> Forty-four letters were submitted in a response that the journal's editor described as "swift and damning".<ref name="pace2011LancetEd"/>

The [[Science Media Centre]] organised a press briefing and [http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Expert Opinion on ME/CFS Study], on 17 Feb 2011.<ref name="paceSMC20110217"/>

The UK and international media heavily publicised this paper after the PACE authors press conference and in conjunction with the Science Media Centre in February 2011.
<ref name="Guardian20110218"/> 
<ref name="Reuters20110217"/><ref name="WebMD20110217"/><ref name="BBCUK20110218"/> <ref name="CNNnews20110218"/>
<ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?ref=science </ref>
<ref> http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html </ref>
<ref> https://web.archive.org/web/20110221183606/http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/Article/201102315935405?lpos=UK_News_Second_Home_Page_Article_Teaser_Region_0&lid=ARTICLE_15935405_Chronic_Fatigue_Syndrome_ME_Could_Be_Reversed_With_Counselling_And_Exercise,_Research_Suggests </ref>
<ref> http://www.meassociation.org.uk/2011/02/pace-study-results-–%C2%A0sky-news-today-18-february-2011/ </ref>
<ref> https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment </ref>
<ref> http://www.netdoctor.co.uk/healthy-eating/news/a20654/counselling-and-exercise-appear-best-for-me/ </ref>
<ref> http://www.express.co.uk/news/uk/229817/Trial-offers-hope-for-ME-sufferers </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html </ref>
<ref> http://www.webmd.boots.com/news/20110217/me-cfs-pacing-yourself-isnt-the-answer </ref>
<ref> http://www.mirror.co.uk/lifestyle/sex-relationships/could-new-techniques-ease-living-117621 </ref>
<ref> https://web.archive.org/web/20110223231102/http://www.itv.com/news/new-me-breakthrough57275/ </ref>
<ref> http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/ </ref>
<ref> http://www.huffingtonpost.com/jacob-teitelbaum-md/pace-study-may-as-well-sa_b_833621.html </ref>
<ref> https://web.archive.org/web/20110221070520/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html </ref>
<ref> http://www.bbc.co.uk/news/health-12493009 </ref>
<ref> http://www.scotsman.com/news/me-sufferers-given-hope-as-scottish-team-leads-way-to-new-therapy-1-1501751 </ref>
<ref> http://www.scotsman.com/lifestyle/is-exercise-always-good-for-the-body-1-1589145 </ref>
<ref> http://www.meassociation.org.uk/2011/04/is-exercise-always-good-for-the-body-edinburgh-evening-news-15-april-2011/ </ref>
<ref> https://web.archive.org/web/20110221092107/http://www.cbc.ca/news/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html</ref>
<ref> http://www.msnbc.msn.com/id/41651311/ns/health-health_care/#.UNHy5uTtRXM </ref>
<ref> http://tinyurl.com/grdmf3b</ref>
<ref> http://www.therapytoday.net/article/show/2317/</ref>
<ref> http://www.primarycarereports.co.uk/uk.html/</ref>

===2012: Cost-effectiveness of CBT and GET===
This paper was published in the [[PLoS One]] journal and concluded that [[cognitive behavioral therapy]] and [[graded exercise therapy]] had the best probability of being the most cost-effective treatments.<ref name="pace2012CE"/> The UK media publicised the results from this paper
<ref> http://www.bbc.co.uk/news/health-19076398 </ref> <ref> http://www.nursingtimes.net/nursing...fatigue-syndrome/5047819.article?referrer=RSS </ref><ref> http://www.independent.co.uk/life-style/health-and-families/health-news/two-chronic-fatigue-syndrome-treatments-offer-good-value-8000997.html </ref> <ref>http://www.huffingtonpost.co.uk/2012/08/02/how-to-spot-symptoms-chronic-fatigue-syndrome_n_1732004.html </ref><ref> http://www.nhs.uk/news/2012/08august/Pages/Pacing-for-chronic-fatigue-syndrome-not-cost-effective.aspx </ref> . Controversy has broken out over the failure of the study authors to provide the underlying data to Professor James Coyne under PLoS One's data-sharing policy.<ref name="Coyne20160214"/> Journalist [[David Tuller]] has criticized the study's assumptions and conclusions.<ref name="Tuller20151222"/>

===2013: "Recovery" rates===
This paper appeared in Psychological Medicine.<ref name="pace2013a"/> The [[Science Media Centre]] issued an "expert opinion" about the study.<ref name="paceSMC20130131"/>

ME/CFS patient [[Graham McPhee]] and others created a video animation - [https://www.youtube.com/watch?v=d_7J5ELjArU How's that recovery?] - explaining problems with the new analyses that had replaced those specified in the study protocol. Sam Carter applied the new fatigue and physical function recovery criteria to the data from the [[FINE trial]] and found that doing so increased the number of "recovered" patients six-fold, compared to the original criteria.<ref name="CarterSam20160215pubmed"/>

Patient-advocate [[Peter Kemp]] also criticized the study, stating that the authors had "twisted the SF-36 Physical Function subscale to suit their needs."<ref name="KempPet20160217"/>

Patients created a tongue-in-cheek song video to satirically criticize the recovery paper results.<ref name="MERecoverySong"/>

===2013: Statistical analysis plan===
Trials Journal published the detailed plan for PACE's data analysis.<ref name="pace2013sap"/>

===2014: Adverse effects===
The Journal of Psychosomatic Research published the results on safety and adverse effects.<ref name="pace2014AE"/>

===2015: Secondary mediation analysis===
[[The Lancet Psychiatry]] published this paper. <ref name="pace2015SMA"/> The UK and international media publicised the results from this paper. <ref name="FoxNews20150114"/><ref name="Guardian20150114"/> <ref> http://www.bbc.co.uk/news/health-30795506 </ref>
<ref> http://www.economist.com/news/science-and-technology/21639438-controversial-trial-mysterious-disease-continues-yield-insights-fear </ref>
<ref> http://www.dailymail.co.uk/health/article-2909029/Chronic-fatigue-victims-suffer-fear-exercise-anxious-activities-aggravate-condition.html </ref>
<ref> http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html </ref>
<ref> http://www.telegraph.co.uk/news/science/science-news/11343258/ME-fear-of-exercise-exacerbates-chronic-fatigue-syndrome-say-researchers.html </ref>
<ref> http://www.bmj.com/content/350/bmj.h227 </ref>
<ref> https://www.sciencedaily.com/releases/2015/01/150113204351.htm </ref>
<ref> http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx</ref>
<ref> https://medicalxpress.com/news/2015-01-beliefs-key-symptoms-disability-chronic.html </ref>
<ref> http://www.medicalnewstoday.com/articles/287972.php </ref>
<ref> http://www.webmd.boots.com/news/20150114/cfs-no-need-to-fear-exercise </ref>

The paper has been criticised by [[Byron Hyde]].<ref name="HydeByr20150122ftm"/>

[[File:Lancet_pace_follow-up_study_chart.jpg|100px|thumb|right|PACE long-term follow-up]]

===2015: Long-term follow-up===

Long-term follow-up results were published in [[The Lancet Psychiatry]] in October 2015.<ref name="pace2015FU"/>

The paper states that at least two years after patients were randomised, "there were no significant differences" in outcomes between the treatment groups. This indicated that APT, CBT and GET added nothing to specialist medical care (SMC), which all groups received. However, the study authors interpreted the results as favouring CBT and GET.

The [[Science Media Centre]] published "expert reaction" to the paper.<ref name="paceSMC20151028"/> The UK media then publicised the results.
<ref name="EveningStdUK20151028"/><ref name="IndepIE20151028"/><ref name="Torjesen20151028"/><ref name="DailyMail20151028"/><ref name="Telegraph20151028"/><ref name="ScienceMag20151027"/>
<ref> http://www.bbc.co.uk/programmes/p036fnz0 </ref> <ref> http://www.mediafire.com/file/94xezajptugoiy2/Prof+Michael+Sharpe+commenting+on+their+latest+PACE+trial+follow-up+study+-+BBC+Radio+4+-+281015.mp3</ref> <ref> https://uk.news.yahoo.com/positive-thinking-exercise-could-help-091553348.html#yax6KeT </ref> <ref> http://www.webmd.boots.com/news/20151028/study-long-term-benefits-of-cfs-me-treatment </ref> <ref> http://www.techtimes.com/articles/100484/20151028/chronic-fatigue-syndrome-is-not-chronic-illness-and-sufferers-who-exercise-think-positively-overcome-symptoms-study.htm </ref>

Professors [[James Coyne]] and [[Keith Laws]] criticised the results as "uninterpretable" and consisting of "null findings."<ref name="Coyne20151029mb"/> The [[ME Association]] also criticized the follow-up study.<ref name="MEASSUK20151028press"/>

===2015: Longitudinal mediation analysis===
This short paper published in Trials Journal concluded: "Approximately half of the effect of each of CBT and GET [...] on physical function was mediated through reducing avoidance of fearful situations".<ref name="pace2015lm"/>

===Other publications===
*2014: [https://www.ncbi.nlm.nih.gov/pubmed/23967878 Pain in chronic fatigue syndrome: response to rehabilitative treatments in the PACE trial]
*2013: [http://andrewgelman.com/wp-content/uploads/2016/01/White-Psych-Bulletin-2015.pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial]
*2013: [https://www.ncbi.nlm.nih.gov/pubmed/22571806 Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome]
*2013: [https://www.researchgate.net/publication/257763666_Training_Supervision_Therapists'_Adherence_to_Manual_Based_Therapies Training, Supervision & Therapists' Adherence to Manual Based Therapies]
*2011: [https://www.ncbi.nlm.nih.gov/pubmed/?term=21843745 Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale]
*2010: [https://www.ncbi.nlm.nih.gov/pubmed/21103120 Psychiatric misdiagnoses in patients with chronic fatigue syndrome]

==Talks & interviews==
*2011: Professors Michael Sharpe and Trudie Chalder were videoed<ref name="pace2011press1"/><ref name="pace2011press2"/><ref name="pace2011press3"/> at [[The Lancet]]'s press conference for the publication of the trial's main results in 2011.
*2011: "Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial", ABC Radio National (Australia), 18 Apr 2011<ref name="pace20110418radio"/>
*2015: Professor James Coyne gave a talk on "A skeptical look at the PACE chronic fatigue trial" in Edinburgh (with YouTube recording,<ref name="Coyne20151116-v1"/><ref name="Coyne20151116-v2"/><ref name="Coyne20151116-v3"/> transcript,<ref name="Coyne20151116-tl"/> and slides<ref name="Coyne20151116-ss"/> available online) and, more recently, Belfast (with YouTube recording<ref name="Coyne20160208-v"/> and slides <ref name="Coyne20160208-ss"/> available online
*2016: While in Amsterdam at The [[Forgotten Plague]] Conference, [[David Tuller]] gave an [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be '''interview'''] with [[Frank Twisk]] on 27 Feb 2016.<ref name="Tuller20160227-v"/> The following day, 28 Feb 2016, David Tuller gave a [https://www.youtube.com/watch?v=1fS6Gzc52VI '''speech'''] with Q&As.<ref name="Tuller20160228-v"/>
*2011, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]

==Learn more==
* Twitter # : [https://twitter.com/search?f=tweets&q=pacetrial&src=typd #PACEtrial ] [https://twitter.com/search?f=tweets&q=pacegate&src=typd #PACEgate]
* Co-Cure Listserve (from 2003): [https://listserv.nodak.edu/cgi-bin/wa.exe?S2=CO-CURE&m=11591&I=-3&L=CO-CURE&d=No+Match%3BMatch%3BMatches&q=pace+trial PACE trial]
* Phoenix Rising Forum: [http://forums.phoenixrising.me/index.php?search/43411490/&q=pace+trial&t=post&o=date&g=1 PACE trial]
* Science for ME Forum: [https://www.s4me.info/search/228403/?q=pace+trial&o=date PACE trial]
*[https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment Wikipedia - Chronic fatigue syndrome treatment]
*[https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome Wikipedia - Controversies related to chronic fatigue syndrome]

==See also==
*[[FINE trial]]
*[[Cochrane]]
*[[Exercise]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[Action for ME]]
*[[PACE Trial Management Group]]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry ISRCTN54285094
| journal = BioMed Central
| date = 22 May 2003
| url = http://www.isrctn.com/ISRCTN54285094
}}</ref>

<ref name="pace2003trialregistryarchive">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Trial Registry (Archive) ISRCTN54285094
| journal = BioMed Central.
| date =
| url = http://tinyurl.com/pacetrialregistry
}}</ref>

<ref name="PACEmanualSSMC">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE - Manual for Doctors - Standardised Specialist Medical Care (SSMC)
| date = 2 Dec 2004
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/7.ssmc-doctor-manual.pdf
}}</ref>
<ref name="PACEmanualPAPT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/2.apt-participant-manual.pdf
| title = PACE - Manual for Participants - Adaptive Pacing Therapy (APT) for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/4.cbt-participant-manual.pdf
| title = PACE - Manual for Participants - Cognitive Behaviour Therapy for CFS/ME
| date = Nov 2004
}}</ref>
<ref name="PACEmanualPGET">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/6.get-participant-manual.pdf
| title = PACE - Manual for Participants - Graded Exercise Therapy for CFS/ME
| date = Nov 2004
}}</ref>

<ref name="pace20060331theft">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = Letter from Professor Peter White re Theft of patient data
| date = 31 Mar 2006
| url = https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
}}</ref>

<ref name="pace2006protocolv5">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE Trial Protocol: Final Version 5.0
| date = 1 Feb 2006
| url = http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
}}</ref>

<ref name="pace2007protocol">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Sharpe | first2 = MC | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = DeCesare | first4 = JC | authorlink4 = Julia DeCesare
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = The PACE trial group | authorlink6 = PACE trial group
| title = Protocol for the PACE Trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
| journal = BMC Neurology
| date = 8 Mar 2007
| pmid = 17397525 | doi = 10.1186/1471-2377-7-6
| url = http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6
}}</ref>

<ref name="pacenwsltr1">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #1
| date = Jun 2006
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
}}</ref>
<ref name="pacenwsltr2">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #2
| date = Mar 2007
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
}}</ref>
<ref name="pacenwsltr3">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #3
| date = Dec 2008
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
}}</ref>
<ref name="pacenwsltr4">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| title = PACE trial participants' newsletter #4
| date = Feb 2011
| url = http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
}}</ref>

<ref name="pace2011press1">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 1 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| title = London Press Conference: Chronic Fatigue Syndrome - part 2 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=jYRjB_t8dYs
}}</ref>
<ref name="pace2011press3">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| title = London Press Conference: Chronic Fatigue Syndrome - part 3 (video)
| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=QfHNQZPPB6k
}}</ref>

<ref name="paceSMC20110217">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| title = Expert Opinion on ME/CFS Study
| date = 17 Feb 2011
| url = http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/
}}</ref>



<ref name="pace2011a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Potts | first4 = L | authorlink4 = Laura Potts
| last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn
| last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare
| last7 = Baber | first7 = HL | authorlink7 = Hannah Baber
| last8 = Burgess | first8 = M | authorlink8 = M Burgess
| last9 = Clark | first9 = LV | authorlink9 = LV Clark
| last10 = Cox | first10 = DL | authorlink10 = DL Cox
| last11 = Bavinton | first11 = J | authorlink11 = Jessica Bavinton
| last12 = Angus | first12 = BJ | authorlink12 = BJ Angus
| last13 = Murphy | first13 = G | authorlink13 = Gabrielle Murphy
| last14 = Murphy | first14 = M | authorlink14 = M Murphy
| last15 = O'Dowd | first15 = H | authorlink15 = H O'Dowd
| last16 = Wilks | first16 = D | authorlink16 = D Wilks
| last17 = McCrone | first17 = P | authorlink17 = Paul McCrone
| last18 = Chalder | first18 = T | authorlink18 = Trudie Chalder
| last19 = Sharpe | first19 = M | authorlink19 = Michael Sharpe
| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| display-authors = 6
| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
| journal = The Lancet | volume = 377 | issue = 9768 | page = 823–836
| date = 5 March 2011
| pmid = 21334061
| doi = 10.1016/S0140-6736(11)60096-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/
}}</ref>

<ref name="pace20110418radio">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript
}}</ref>

<ref name="pace20110418radio-archive">{{citation
| last1 = Swan | first1 = Norman | authorlink1 = Norman Swan
| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe
| last3 = Horton | first3 = Richard | authorlink3 = Richard Horton
| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial (archive)
| journal = ABC Radio National (Australia) - Health Report
| date = 18 Apr 2011
| url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3
}}</ref>

<ref name="pace2011LancetEd">{{citation
| last1 = The Lancet
| title = Editorial: Patients' power and PACE
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60696-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
}}</ref>

<ref name="pace20110517corr">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn
| last5 = Baber | first5 = HL | authorlink5 = Hannah Baber
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe
| last8 = on behalf of the coauthors
| display-authors = 6
| title = (correspondence) The PACE trial in chronic fatigue syndrome – Authors' reply
| journal = The Lancet | volume = 377 | issue = 9780 | page = 1834–1835
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60651-X
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
}}</ref>

<ref name="paceWessely20110729">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Malicious' harassment of ME researchers
| journal = BBC (UK) - Today
| date = 29 Jul 2011
| url = http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
}}</ref>

<ref name="paceWessely20110806">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| last2 = Marsh | first2 = Stefanie | authorlink2 =
| title = Interview with Professor Simon Wessely
| journal = The Times (UK)
| date = 6 August 2011
| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
| archive-url = http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/
| archive-date = 6 Aug 2011
}}</ref>

<ref name="paceWessely20110827">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = Mind the gap - It’s time to stop separating psychiatry and neurology
| journal = Spectator (UK)
| date = 27 Aug 2011
| url = http://www.spectator.co.uk/2011/08/mind-the-gap-3/
}}</ref>

<ref name="pace2012CE">{{citation
| last1 = McCrone | first1 = P | authorlink1 = Paul McCrone
| last2 = Sharpe | first2 = M | authorlink2 = Michael Sharpe
| last3 = Chalder | first3 = T | authorlink3 = Trudie Chalder
| last4 = Knapp | first4 = M | authorlink4 = Martin Knapp
| last5 = Johnson | first5 = AL | authorlink5 = Anthony Johnson
| last6 = Goldsmith | first6 = K | authorlink6 = Kimberley Goldsmith
| title = Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
| journal = PLoS One | date = 1 Aug 2012
| pmid = 22870204 | doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
}}</ref>

<ref name="paceSMC20130131">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
| journal = Science Media Centre (UK)
| date = 31 Jan 2013
| url = http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/
}}</ref>

<ref name="pace2013a">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| last2 = Goldsmith | first2 = K | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Sharpe | first5 = M | authorlink5 = Michael Sharpe
| last6 = PACE Trial Management Group | authorlink6 = PACE Trial Management Group
| title = Recovery from chronic fatigue syndrome after treatments given in the PACE trial
| journal = Psychol Med | volume = 43 | issue = 10 | page = 2227-2235
| date = Oct 2013
| pmid = 3776285 | doi = 10.1017/S0033291713000020
}}</ref>

<ref name="pace2013corrbmj664559">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
| title = (response) Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
| journal = BMJ | volume = 347 | page = f5731
| date = 25 Sep 2013
| doi = 10.1136/bmj.f5731
| url = http://www.bmj.com/content/347/bmj.f5731/rr/664559
}}</ref>

<ref name="pace2013sap">{{citation
| last1 = Walwyn | first1 = R | authorlink1 = Rebecca Walwyn
| last2 = Potts | first2 = L | authorlink2 = Laura Potts
| last3 = McCrone | first3 = P | authorlink3 = Paul McCrone
| last4 = Johnson | first4 = AL | authorlink4 = Anthony Johnson
| last5 = DeCesare | first5 = JC | authorlink5 = Julia DeCesare
| last6 = Baber | first6 = HL | authorlink6 = Hannah Baber
| last7 = Goldsmith | first7 = KA | authorlink7 = Kimberley Goldsmith
| last8 = Sharpe | first8 = M | authorlink8 = Michael Sharpe
| last9 = Chalder | first9 = T | authorlink9 = Trudie Chalder
| last10 = White | first10 = PD | authorlink10 = Peter White
| display-authors = 6
| title = A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan
| journal = Trials Journal
| date = 13 Nov 2013
| doi = 10.1186/1745-6215-14-386
| url = http://www.trialsjournal.com/content/14/1/386
}}</ref>

<ref name="pace2014AE">{{citation
| last1 = Dougall | first1 = D | authorlink1 = Dominic Dougall
| last2 = Johnson | first2 = A | authorlink2 = Anthony Johnson
| last3 = Goldsmith | first3 = K | authorlink3 = Kimberley Goldsmith
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Angus | first5 = B | authorlink5 = Brian Angus
| last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder
| last7 = White | first7 = P | authorlink7 = Peter White
| display-authors = 6
| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
| journal = Journal of Psychosomatic Research | volume = 77 | issue = 1 | page = 20-26
| date = Jul 2014
| doi = 10.1016/j.jpsychores.2014.04.002
| url = http://www.sciencedirect.com/science/article/pii/S0022399914001883
}}</ref>

<ref name="pace2015SMA">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue =2 | page = 141-52
| date = 28 Jan 2015
| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
}}</ref>

<ref name="pace2015corrlanpsy0114-5">{{citation
| last1 = Chalder | first1 = T | authorlink1 = Trudie Chalder
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = (response) Author's reply - Methods and outcome reporting in the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | issue = 4 | page = e10–e11
| date = April 2015
| doi = 10.1016/S2215-0366(15)00114-5
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
}}</ref>

<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
| date = 27 Oct 2015
| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/
| quote = There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
}}</ref>

<ref name="paceSMC20151028">{{citation
| author = Science Media Centre (UK) | authorlink1 =
| title = Expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
| journal = Science Media Centre (UK)
| date = 28 Oct 2015
| url = http://www.sciencemediacentre.org/expert-reaction-to-long-term-follow-up-study-from-the-pace-trial-on-rehabilitative-treatments-for-cfsme-and-accompanying-comment-piece/
}}</ref>

<ref name="paceWesselyTitanic">{{citation
| last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely
| title = The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage
| journal = National Elf Service (UK)
| date = 4 Nov 2015
| url = http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
}}</ref>

<ref name="pace2015lm">{{citation
| last1 = Goldsmith | first1 = KA | authorlink1 = Kimberley Goldsmith
| last2 = Chalder | first2 = T | authorlink2 = Trudie Chalder
| last3 = White | first3 = PD | authorlink3 = Peter White
| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
| title = Longitudinal mediation in the PACE randomised clinical trial of rehabilitative treatments for chronic fatigue syndrome: modelling and design considerations
| journal = Trials Journal / Paperity
| date = 17 Nov 2015
| url = http://paperity.org/p/74741700/longitudinal-mediation-in-the-pace-randomised-clinical-trial-of-rehabilitative-treatments
}}</ref>

<ref name="pace2016corrlanpsy00018-3">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
| last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith
| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = (correspondence) Authors' reply - Patient reaction to the PACE trial
| journal = The Lancet Psychiatry | volume = 3 | issue = 2 | page = e8–e9
| date = February 2016
| doi = 10.1016/S2215-0366(16)00018-3
| url = http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)00018-3/fulltext
}}</ref>

<ref name="paceLIST">{{citation
| title = List of PACE Trial Publications
| journal = ME-pedia
| date = 2016
| url = http://me-pedia.org/wiki/PACE_trial@List_of_PACE_trial_publications
}}</ref>



<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
| url = http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/
}}</ref>

<ref name="various2013bmjf5963">{{citation
| last1 = (various authors)
| title = (31 responses) Re: PACE trial authors’ reply to letter by Kindlon
| journal = BMJ | volume = 2013;347:f5963
| date = 15 Oct 2013
| doi = 10.1136/bmj.f5963
| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
}}</ref>



<ref name="FOI20121026">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
| date = 26 Oct 2012
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
}}</ref>
<ref name="FOI20130903">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| title = FOI Request: 6min walking test data - Recovered patients in PACE trial
| date = 3 Sep 2013
| url = https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
}}</ref>
<ref name="FOI20131029C">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = FOI Request: PACE Recovery Rates and Positive Outcome Rates (repeat request)
| date = 29 Oct 2013
| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2
}}</ref>
<ref name="FOI20140324M">{{citation
| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
| title = FOI Request: Selected data on PACE Trial participants
| date = 24 Mar 2014
| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
}}</ref>
<ref name="FOI20140324M-b">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
| last2 = (via FOI request) | authorlink2 =
| title = PACE trial protocol: Full Trial Consent Form with Missing Therapist and No Cover
| date = 9 Mar 2006
| url = https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent%20forms.pdf
}}</ref>
<ref name="FOI20150318">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 18 Mar 2015
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf
}}</ref>
<ref name="FOI20150629GM">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial
}}</ref>
<ref name="FOI20150629GM-c">{{citation
| last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee
| title = FOI Request: Fitness data for PACE trial
| date = 28 Jul 2015
| url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451
}}</ref>
<ref name="FOI20151027QMUL">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 27 Oct 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
}}</ref>
<ref name="FOI20151101AS">{{citation
| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
| url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new
| title = FOI Request: Raw 6min walking test data after treatment
| date = 1 Nov 2015
}}</ref>
<ref name="FOI20151211JC">{{citation
| last1 = Kings College London
| title = FOI Request: Response from Kings College London to James Coyne
| date = 11 Dec 2015
| url = https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf
}}</ref>
<ref name="FOI20160309AS">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 9 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
}}</ref>
<ref name="FOI20160812">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 12 Aug 2016
| url = http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
}}</ref>
<ref name="FOI20160329">{{citation
| last1 = Information Commissioner's Office, UK
| title = FOI Decision Notice: to QMUL
| date = 29 Mar 2016
| url = https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
}}</ref>



<ref name="openletrLANCET1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| title = An open letter to Dr Richard Horton and The Lancet
| date = 13 Nov 2015
| website = Virology Blog
| url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
}}</ref>

<ref name="openletrQMUL1">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Levin | first2 = Bruce | authorlink2 = Bruce Levin
| last3 = Racaniello | first3 = Vincent R | authorlink3 = Vincent Racaniello
| last4 = Tuller | first4 = David | authorlink4 = David Tuller
| title = Open letter: A request for data from the PACE trial
| journal = Virology Blog
| date = 17 Dec 2015
| url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrLANCET2">{{citation
| last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis
| last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards
| last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason
| last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin
| last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello
| last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold
| last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi
| last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk
| last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos
| last10 = Bateman | first10= Lucinda | authorlink10= Lucinda Bateman
| last11 = Bell | first11= David S | authorlink11= David Bell
| last12 = Bested | first12= Alison C | authorlink12= Alison Bested
| last13 = Broderick | first13= Gordon | authorlink13= Gordon Broderick
| last14 = Chia | first14= John | authorlink14= John Chia
| last15 = Chu | first15= Lily | authorlink15= Lily Chu
| last16 = Enlander | first16= Derek | authorlink16= Derek Enlander
| last17 = Fletcher | first17= Mary Ann | authorlink17= Mary Ann Fletcher
| last18 = Friedman | first18= Kenneth | authorlink18= Kenneth Friedman
| last19 = Kaufman | first19= David L | authorlink19= David Kaufman
| last20 = Klimas | first20= Nancy | authorlink20= Nancy Klimas
| last21 = Lapp | first21= Charles W | authorlink21= Charles Lapp
| last22 = Levine | first22= Susan | authorlink22= Susan Levine
| last23 = Light | first23= Alan R | authorlink23= Alan Light
| last24 = Marshall-Gradisnik | first24= Sonya | authorlink24= Sonya Marshall-Gradisnik
| last25 = Medveczky | first25= Peter G | authorlink25= Peter Medveczky
| last26 = Nahle | first26= Zaher | authorlink26= Zaher Nahle
| last27 = Oleske | first27= James M | authorlink27= James Oleske
| last28 = Podell | first28= Richard N | authorlink28= Richard Podell
| last29 = Shepherd | first29= Charles | authorlink29= Charles Shepherd
| last30 = Snell | first30= Christopher R | authorlink30= Christopher Snell
| last31 = Speight | first31= Nigel | authorlink31= Nigel Speight
| last32 = Staines | first32= Donald | authorlink32= Donald Staines
| last33 = Stark | first33= Philip B | authorlink33= Philip Stark
| last34 = Stein | first34= Eleanor | authorlink34= Eleanor Stein
| last35 = Swartzberg | first35= John | authorlink35= John Swartzberg
| last36 = Tompkins | first36= Ronald G | authorlink36= Ronald Tompkins
| last37 = Underhill | first37= Rosemary | authorlink37= Rosemary Underhill
| last38 = Vallings | first38= Rosamund | authorlink38= Rosamund Vallings
| last39 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| last40 = Weir | first40= William | authorlink40= William Weir
| last41 = Zinn | first41= Marcie L | authorlink41= Marcie Zinn
| last42 = Zinn | first42= Mark A | authorlink42= Mark Zinn
| display-authors = 6
| title = An open letter to the Lancet - again
| date = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="openletrMEASSUK">{{citation
| author = ME Association (UK) | authorlink1 = ME Association
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 9 Feb 2016
| url = http://www.meassociation.org.uk/2016/02/me-association-writes-in-support-of-foi-request-relating-to-release-of-pace-trial-data-9-february-2016/
}}</ref>
<ref name="openletr25%MEGRP">{{citation
| author = 25% ME Group | authorlink1 = 25 Percent ME Group
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 10 Feb 2016
| url = https://t.co/3TAh9bYIDe
}}</ref>
<ref name="openletrACTMEUK">{{citation
| author = Action for ME (UK) | authorlink1 = Action for ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
}}</ref>
<ref name="openletrIIMElan">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 12 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrIIMEmrc">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Open Letter to MRC - Request for the release of PACE trial data
| date = 19 Feb 2016
| url = http://www.investinme.org/IIME-Newslet-1602-02.htm
}}</ref>
<ref name="openletrMEFMANCAN">{{citation
| author = National ME/FM Action Network (Canada) | authorlink1 = National ME/FM Action Network
| title = Open Letter to The Lancet - Request for the release of PACE trial data
| date = 14 Feb 2016
| url = https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676?fref=nf
}}</ref>
<ref name="openletrTymesTrust">{{citation
| author = Tymes Trust (UK) | authorlink1 = Tymes Trust
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/tymestrust/posts/1711199185831883
}}</ref>
<ref name="openletrHOPE4MEFNI">{{citation
| author = Hope for ME and Fibro Northern Ireland | authorlink1 = Hope 4 ME & Fibro NI
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 16 Feb 2016
| url = https://www.facebook.com/Hope4MEFibro/posts/1006557642736389
}}</ref>
<ref name="openletrWAMES">{{citation
| author = Welsh Association of ME & CFS Support (WAMES) | authorlink1 = Welsh Association of ME & CFS Support
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 17 Feb 2016
| url = http://wames.org.uk/cms-english/2016/02/wames-writes-in-support-of-releasing-pace-trial-data/
}}</ref>
<ref name="openletrMERESEARCHUK">{{citation
| author = ME Research UK | authorlink1 = ME Research UK
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 18 Feb 2016
| url = http://www.meresearch.org.uk/news/accessibility-of-data/
}}</ref>
<ref name="openletrPHOENIX">{{citation
| author = Phoenix Rising | authorlink1 = Phoenix Rising
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 7 Mar 2016
| url = http://phoenixrising.me/archives/27969
}}</ref>

<ref name="openletrEMEA">{{citation
| author1 = European ME Alliance (EMEA) | authorlink1 = European ME Alliance
| author2 = ME-Vereniging (Belgium) | authorlink2 = ME-Vereniging
| author3 = Foreningen for Myalgisk Encefalomyelitis (Denmark) | authorlink3 = Foreningen for Myalgisk Encefalomyelitis
| author4 = ME Foreningen (Denmark) | authorlink4 = ME Foreningen
| author5 = Suomen CFS-Yhdistys (Finland) | authorlink5 = Suomen CFS-Yhdistys
| author6 = Fatigatio e.V. (Germany) | authorlink6 = Fatigatio e.V.
| author7 = Het Alternatief (Netherlands) | authorlink7 = Het Alternatief
| author8 = ME félag Íslands (Iceland) | authorlink8 = ME félag Íslands
| author9 = Irish ME Trust (Ireland) | authorlink9 = Irish ME Trust
| author10= Associazione Malati di CFS (Itali) | authorlink10= Associazione Malati di CFS Onlu
| author11= Norges ME-forening (Norway) | authorlink11= Norges ME-forening
| author12= Liga SFC (Spain) | authorlink12= Liga SFC
| author13= Riksföreningen för ME-patienter (RME) (Sweden) | authorlink13= Riksföreningen för ME-patienter
| author14= Verein ME/CFS Schweiz (Switzerland) | authorlink14= Verein ME/CFS Schweiz
| author15= Invest in ME (UK) | authorlink15= Invest in ME
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 12 Mar 2016
| url = http://www.euro-me.org/Documents/Documents-EU/EMEA%20Letter%20PACE%20TRIAL%20QMUL%202016.pdf
}}</ref>

<ref name="openletrEmergeAust">{{citation
| author = Emerge Australia | authorlink1 = Emerge Australia
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 20 Mar 2016
| url = http://emerge.org.au/pace-trial-letter/?ct=t(April_newsletter07_04_2016)#.VxCR8KR97tR
}}</ref>
<ref name="openletrMECFSSthAust">{{citation
| author = ME/CFS Australia (South Australia) | authorlink1 = ME/CFS Australia (SA) Inc
| title = Open Letter to QMUL - Request for the release of PACE trial data
| date = 30 Mar 2016
| url = http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm
}}</ref>



<ref name="BaileyL201601">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = My thoughts about the PACE trial
| journal = Lucibee's Blog
| date = 27 Jan 2016
| url = https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/
}}</ref>

<ref name="BaileyL201710">{{citation
| last1 = Bailey | first1 = Lucy | authorlink1 = Lucy Bailey
| title = A Case for Retraction ?
| journal = The Lancet Infectious Diseases
| date = Oct 2017
| url = http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(17)30527-3/fulltext
| doi = 10.1016/S1473-3099(17)30527-3
}}</ref>

<ref name="BACME201103">{{citation
| last1 = British Association for CFS/ME (BACME) | authorlink1 =
| date = Mar 2011
| title = Statement on the PACE Trial results
| url = http://www.bacme.info/aboutbacme/pace_trial.html
}}</ref>

<ref name="BBCUK20110218">{{citation
| last1 = BBC News (UK)
| title = Brain and body training treats ME, UK study says
| date = 18 Feb 2011
| url = http://www.bbc.com/news/health-12493009
}}</ref>

<ref name="BBCUK20110721">{{citation
| last1 = BBC News (UK)
| last2 = Fielden | first2 = Tom
| title = 'Torrent of abuse' hindering ME research
| date = 21 Jul 2011
| url = http://www.bbc.co.uk/news/science-environment-14326514
}}</ref>

<ref name="ButterworthT20160321">{{citation
| last1 = Butterworth | first1 = Trevor | authorlink1 = Trevor Butterworth
| title = Editorial: On PACE
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/editorial-on-pace/
}}</ref>

<ref name="CarterSam20160215pubmed">{{citation
| last1 = Carter | first1 = Samuel | authorlink1 = Samuel Carter
| title = (correspondence) Exploring changes to PACE trial outcome measures using anonymised data from the FINE trial
| journal = PubMed Commons
| date = 15 February 2016
| url = https://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248
}}</ref>

<ref name="CDCguideMECFS">{{citation
| last1 = Centers for Disease Control and Prevention (CDC) USA | authorlink1 =
| url = http://www.cdc.gov/cfs/education/diagnosis/index.html
| title = Diagnosis and Management of Chronic Fatigue Syndrome
| date = 27 Jun 2012
| accessdate = 10 Mar 2016
}}</ref>

<ref name="CNNnews20110218">{{citation
| last1 = CNN News (USA)
| title = Study supports use of 2 controversial treatments for chronic fatigue
| date = 18 Feb 2011
| url = http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
}}</ref>

<ref name="CntrWelfRefm20160819">{{citation
| last1 = Centre for Welfare Reform (UK)
| title = Major breakthrough on PACE trial
| journal = Centre for Welfare Reform (UK)
| date = 19 Aug 2016
| url = http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html#.V7c_CycXIps.twitter
}}</ref>

<ref name="CourtneyRob201504lanpsy">{{citation
| last1 = Courtney | first1 = Robert | authorlink1 = Robert Courtney
| title = (correspondence) Doubts over the validity of the PACE hypothesis
| journal = The Lancet Psychiatry
| date = Apr 2015
| doi = 10.1016/S2215-0366(15)00054-1
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext
}}</ref>



<ref name="Coyne20151029po">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = PLoS One Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151029mb">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/
| title = Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study
| journal = MindTheBrain Blog | date = 29 Oct 2015
}}</ref>
<ref name="Coyne20151104">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://twitter.com/coyneoftherealm/status/661858010327748608
| title = @Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
| journal = Twitter | date = 4 Nov 2015
}}</ref>
<ref name="Coyne20151111">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
| title = Why the scientific community needs the PACE trial data to be released
| journal = MindTheBrain Blog | date = 11 Nov 2015
}}</ref>

<ref name="Coyne20151116-v1">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=KSGtZgzkoRQ
| title = A skeptical look at the PACE chronic fatigue trial - video part 1
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v2">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=a8IdkZMCUXY
| title = A skeptical look at the PACE chronic fatigue trial - video part 2
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-v3">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=JHQuRp_cbbY
| title = A skeptical look at the PACE chronic fatigue trial - video part 3
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial
| title = A skeptical look at the PACE chronic fatigue trial - slide show
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tf">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/6tlkh6qcfvhlf9e/A_skeptical_look_at_PACE_16_11_2015_full_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - complete transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-ts">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.mediafire.com/view/n5r9qdqmxftmb39/A_skeptical_look_at_PACE_16_11_2015_edited_transcript.pdf
| title = A skeptical look at the PACE chronic fatigue trial - summarised transcript
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-tl">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://phoenixrising.me/transcripts-of-talk-on-the-pace-trial-by-professor-james-coyne-in-edinburgh-16-november-2015
| title = A skeptical look at the PACE chronic fatigue trial - transcript links
| place = Edinburgh | date = 16 Nov 2015
}}</ref>
<ref name="Coyne20151116-au">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs
| title = A skeptical look at the PACE chronic fatigue trial - audio recording
| place = Edinburgh | date = 16 Nov 2015
}}</ref>

<ref name="Coyne20151125">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
| title = Was independent peer review of the PACE trial articles possible?
| journal = MindTheBrain Blog | date = 25 Nov 2015
}}</ref>
<ref name="Coyne20151202">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/02/what-it-takes-for-queen-mary-to-declare-a-request-for-scientific-data-vexatious/
| title = What it takes for Queen Mary to declare a request for scientific data “vexatious”
| journal = QuickThoughts Blog | date = 2 Dec 2015
}}</ref>
<ref name="Coyne20151204">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2015/12/04/update-on-my-formal-request-for-release-of-the-pace-trial-data/
| title = Update on my formal request for release of the PACE trial data
| journal = QuickThoughts Blog | date = 4 Dec 2015
}}</ref>
<ref name="Coyne20151218">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = King’s College London stalls some more, reiterating refusal to release the PACE trial data
| journal = QuickThoughts Blog
| date = 18 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
}}</ref>
<ref name="Coyne20151222">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Recognizing when “protecting patient privacy” is mere excuse for not sharing data
| journal = QuickThoughts Blog
| date = 22 Dec 2015
| url = https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
}}</ref>
<ref name="Coyne20160102">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Glimpses into the assault on data sharing
| journal = QuickThoughts Blog
| date = 2 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
}}</ref>
<ref name="Coyne20160131">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Further insights into war against data sharing: Science Media Centre’s letter writing campaign to UK Parliament
| journal = QuickThoughts Blog | date = 31 Jan 2016
| url = https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/
}}</ref>
<ref name="Coyne20160208-v">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
| title = The scandal of the £5m PACE trial for ME - video
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160208-ss">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = http://www.slideshare.net/jamesccoyne/the-scandal-of-the-5m-pace-chronic-fatigue-trial
| title = The scandal of the £5m PACE trial for ME - slide show
| date = 8 Feb 2016
}}</ref>
<ref name="Coyne20160214">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/14/a-call-for-the-unconditional-release-of-the-plos-one-pace-data-part-1/
| title = A call for the unconditional release of the PLOS One PACE data Part 1
| journal = QuickThoughts Blog | date = 14 Feb 2016
}}</ref>
<ref name="Coyne20160220">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| url = https://jcoynester.wordpress.com/2016/02/20/as-major-medical-journals-balk-is-bmj-moving-forward-with-routine-data-sharing/
| title = As major medical journals balk, BMJ moves forward with routine data sharing
| journal = QuickThoughts Blog | date = 20 Feb 2016
}}</ref>
<ref name="Coyne20160307">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Update: PLoS One affirms my (and anyone else’s) right to PACE data published there
| journal = QuickThoughts Blog
| date = 7 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/07/update-plos-one-affirms-my-and-anyone-elses-right-to-pace-data-published-there/
}}</ref>
<ref name="Coyne20160309">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = UK expert: AIDS data should not be shared until requesters shown to be HIV
| journal = QuickThoughts Blog
| date = 9 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/09/uk-expert-aids-data-should-not-be-shared-until-requesters-shown-to-be-hiv/
}}</ref>
<ref name="Coyne20160326">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ‘We don’t share data.’ Why Peter White’s Wall Street Journal letter can be ignored
| journal = QuickThoughts Blog
| date = 26 Mar 2016
| url = https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/
}}</ref>
<ref name="Coyne20160818">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Release the PACE trial data: My submission to the UK Tribunal
| journal = QuickThoughts Blog
| date = 18 Aug 2016
| url = https://jcoynester.wordpress.com/2016/08/18/release-the-pace-trial-data-my-submission-to-the-uk-tribunal/
}}</ref>
<ref name="Coyne20170318">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data
| journal = QuickThoughts Blog
| date = 18 Mar 2017
| url = https://jcoynester.wordpress.com/2017/03/18/dont-bother-to-apply-pace-investigators-issue-guidance-for-researchers-requesting-access-to-data
}}</ref>
<ref name="CoyneMECFSIndex">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| title = ME/CFS
| journal = QuickThoughts Blog
| url = https://jcoynester.wordpress.com/category/mecfs
}}</ref>

<ref name="CoyneLaws20160118">{{citation
| last1 = Coyne | first1 = James | authorlink1 = James Coyne
| last2 = Laws | first2 = Keith | authorlink2 = Keith Laws
| title = (comment) Results of the PACE follow-up study are uninterpretable
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
}}</ref>

<ref name="DailyMail20110218">{{citation
| last1 = Daily Mail (UK)
| title = Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
| date = 18 Feb 2011
| url = http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
}}</ref>

<ref name="DailyMail20151028">{{citation
| last1 = Daily Mail (UK)
| title = ME can be beaten by taking more exercise and positive thinking, landmark study claims
| date = 28 Oct 2015
| url = http://www.dailymail.co.uk/health/article-3292782/All-mind-cured-counselling-says-Oxford-professor-claims-sufferers-not-push-recover.html#comments
}}</ref>

<ref name="DuffyS20160420">{{citation
| last1 = Duffy | first1 = Simon | authorlink1 = Simon Duffy
| last2 = Centre for Welfare Reform (UK)
| title = The Misleading Research at the Heart of Disability Cuts
| journal = Huffington Post (UK)
| date = 20 Apr 2016
| url = https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
}}</ref>

<ref name="EllisC20160125">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE trial's forbidden fruit - is the data really poisonous?
| journal = AutoDidact Blog
| date = 25 Jan 2016
| url = https://autodidactauthor.wordpress.com/2016/01/25/pace-trials-forbidden-fruit-is-the-data-really-poisonous/
}}</ref>
<ref name="EllisC20160829">{{citation
| last1 = Ellis | first1 = Clark | authorlink1 = Clark Ellis
| title = PACE and the interests of trial participants
| journal = AutoDidact Blog
| date = 29 Aug 2016
| url = https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/
}}</ref>

<ref name="EdwardsJC20150118">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = (response) Re: Tackling fears about exercise is important for ME treatment
| journal = BMJ | volume = 350 | page = h227
| date = 18 Jan 2015
| doi = 10.1136/bmj.h227
| url = http://www.bmj.com/content/350/bmj.h227/rr-9
}}</ref>
<ref name="EdwardsJC20151101">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Prof. Jonathan Edwards: PACE trial is 'valueless'
| journal = #MEAction | date = 1 Nov 2015
| url = http://www.meaction.net/2015/11/01/prof-jonathan-edwards-pace-trial-is-valueless/
}}</ref>
<ref name="EdwardsJC20160827">{{citation
| last1 = Edwards | first1 = Jonathan CW | authorlink1 = Jonathan Edwards
| title = Tribunal was right to order release of chronic fatigue trial data
| journal = The Conversation (UK)
| date = 27 Aug 2016
| url = https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
}}</ref>

<ref name="EgelandT2015">{{citation
| last1 = Egeland | first1 = T | authorlink1 = Torstein Egeland
| last2 = Angelsen | first2 = A | authorlink2 = Arild Angelsen
| last3 = Haug | first3 = R | authorlink3 = Ruth Haug
| last4 = Henriksen | first4 = JO | authorlink4 = Jan-Olave Henriksen
| last5 = Lea | first5 = TE | authorlink5 = Tor Erling Lea
| last6 = Saugstad | first6 = OD | authorlink6 = Ola Didrik Saugstad
| title = What exactly is myalgic encephalomyelitis?
| type = Perspectives
| journal = Tidsskr Nor Legeforen | volume = 2015 | issue = 135 | page = 1756–9
| date = Oct 2015
| doi = 10.4045/tidsskr.15.0089
| url = http://tidsskriftet.no/article/3404849/en_GB
| lay-url = http://www.meaction.net/2015/12/10/norwegian-researchers-ask-what-exactly-is-m-e/
}}</ref>

<ref name="EliotSmith20160715">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Short Update on the Progress of the PACE Trial judgment (QMUL v IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 15 Jul 2016
| url = https://valerieeliotsmith.com/2016/07/15/short-update-on-the-progress-of-the-pace-trial-judgment-qmul-v-ic-and-matthees/
}}</ref>

<ref name="EliotSmith20160816">{{citation
| last1 = Eliot Smith | first1 = Valerie | authorlink1 = Valerie Eliot Smith
| title = Tribunal orders release of PACE Trial data (QMUL v the IC and Matthees)
| journal = ValerieEliotSmith Blog
| date = 16 Aug 2016
| url = https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
}}</ref>

<ref name="EveningStdUK20151028">{{citation
| last1 = Evening Standard (UK)
| title = Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome
| date = 28 Oct 2015
| url = http://www.standard.co.uk/news/uk/exercise-and-positive-thinking-can-help-overcome-chronic-fatigue-syndrome-a3100846.html
}}</ref>

<ref name="FeehanSar20110517lancet">{{citation
| last1 = Feehan | first1 = Sarah M | authorlink1 = Sarah Feehan
| last2 = on behalf of the Liverpool ME Support Group
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60688-0
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60688-0/fulltext
}}</ref>

<ref name="FoxNews20150114">{{citation
| last1 = FoxNews (USA)
| title = Helping chronic fatigue patients over fears eases symptoms
| date = 14 Jan 2015
| url = http://www.foxnews.com/health/2015/01/14/helping-chronic-fatigue-patients-over-fears-eases-symptoms.html
}}</ref>

<ref name="GelmanA20151223">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = To keep science honest, study data must be shared
| journal = StatNews
| date = 23 Dec 2015
| url = http://www.statnews.com/2015/12/23/sharing-data-science/
}}</ref>
<ref name="GelmanA20151225">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = More on the PACE (chronic fatigue syndrome study) scandal
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 25 Dec 2015
| url = http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
}}</ref>
<ref name="GelmanA20160105">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = PACE study and the Lancet: Journal reputation is a two-way street
| journal = Statistical Modeling, Causal Inference, and Social Science (blog)
| date = 5 Jan 2016
| url = http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
}}</ref>
<ref name="GelmanA20170709">{{citation
| last1 = Gelman | first1 = Andrew | authorlink1 = Andrew Gelman
| title = A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
| journal = New Yorker (USA)
| date = 9 Jul 2017
| url = http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research
}}</ref>

<ref name="Giakoumakis20110517lancet">{{citation
| last1 = Giakoumakis | first1 = Jane | authorlink1 = Jane Giakoumakis
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| doi = 10.1016/S0140-6736(11)60689-2
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60689-2/fulltext
}}</ref>

<ref name="GoldinR20160321">{{citation
| last1 = Goldin | first1 = Rebecca | authorlink1 = Rebecca Goldin
| title = PACE: The research that sparked a patient rebellion and challenged medicine
| type = Review of Study Design
| journal = Sense About Statistics (American Statistical Association)
| date = 21 Mar 2016
| url = http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
}}</ref>

<ref name="GoudsmitE20141213">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = Response to article in the magazine published by the UK charity MCS-Aware
| date = 13 Dec 2014
| url = http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/
}}</ref>

<ref name="GoudsmitE20160219">{{citation
| last1 = Goudsmit | first1 = Ellen | authorlink1 = Ellen Goudsmit
| title = The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME?
| date = 19 February 2016
| url = http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf
}}</ref>

<ref name="Guardian20110218">{{citation
| last1 = Guardian (UK)
| last2 = Sarah Boseley
| title = Study finds therapy and exercise best for ME
| date = 18 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment
}}</ref>

<ref name="Guardian20110224truth">{{citation
| last1 = Guardian (UK)
| last2 = Jane Colby
| title = ME – the truth about exercise and therapy
| date = 24 Feb 2011
| url = http://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy
}}</ref>

<ref name="Guardian20110821">{{citation
| last1 = Guardian (UK)
| last2 = Robin McKie
| title = Chronic fatigue syndrome researchers face death threats from militants
| date = 21 Aug 2011
| url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
}}</ref>

<ref name="Guardian20150114">{{citation
| last1 = Guardian (UK)
| title = Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
| date = 14 Jan 2015
| url = http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
}}</ref>

<ref name="HaleC201512">{{citation
| last1 = Hale | first1 = Catherine | authorlink1 = Catherine Hale
| title = The politics of stigma with ME/CFS
| journal = Catherine Hale (blog)
| date = 17 Dec 2015
| url = http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html
}}</ref>

<ref name="Hawkes2011">{{citation
| last1 = Hawkes | first1 = Nigel | authorlink1 = Nigel Hawkes
| title = Dangers of research into chronic fatigue syndrome
| journal = BMJ
| date = 22 Jul 2011
| url = http://www.bmj.com/content/342/bmj.d3780
| doi = 10.1136/bmj.d3780
}}</ref>

<ref name="HoopWill20040620">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Issues re the use of the Oxford criteria for the MRC “CFS” Trials
| date = 20 Jun 2004
| url = http://www.margaretwilliams.me/2004/issues-re-use-of-oxford-criteria-for-mrc_20jun2004.pdf
}}</ref>
<ref name="HoopWill20091217">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Can the MRC PACE Trial be justified
| date = 17 Dec 2009
| url = http://www.margaretwilliams.me/2009/can-the-mrc-pace-trial-be-justified.pdf
}}</ref>
<ref name="HoopWill201002MM">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201002MM-b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| title = Magical Medicine: How to Make a Disease Disappear
| pages = 254 to 256
| date = Feb 2010
| url = http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf
}}</ref>
<ref name="HoopWill201103">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Complaint to the Editor of the Lancet about the PACE Trial Articles
| date = Mar 2011
| url = http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
}}</ref>
<ref name="HoopWill20110528">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles published in The Lancet
| date = 28 May 2011
| url = http://www.margaretwilliams.me/2011/hooper-detailed-response-to-lancet_28may2011.pdf
}}</ref>
<ref name="HoopWill20110604">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet
| date = 4 Jun 2011
| url = http://www.margaretwilliams.me/2011/further-concerns-pace-lancet_hooper_24jun2011.pdf
}}</ref>
<ref name="HoopWill20130206">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Comments on the PACE debate held in House of Lords (Grand Committee) on 6th February 2013
| date = 6 Feb 2013
| url = http://www.margaretwilliams.me/2013/comments-on-the-pace-debate-held-in-grand-committee-on_6feb2013.pdf
}}</ref>
<ref name="HoopWill201309a">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
}}</ref>
<ref name="HoopWill201309b">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Key Concerns about the PACE trial
| date = Sep 2013
| url = http://www.margaretwilliams.me/2013/pace-for-new-lawyers.pdf
}}</ref>
<ref name="HoopWill20151114">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = PACE Trial Key Dates and Chronology of Complaint
| date = 14 Nov 2015
| url = http://www.margaretwilliams.me/2015/pace-trial-complaint-chronology.pdf
}}</ref>

<ref name="HoopWill20170201">{{citation
| last1 = Hooper | first1 = Malcolm | authorlink1 = Malcolm Hooper
| last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams
| title = Concerns about Public Funding for the PACE Trial - Committee of Public Accounts
| date = 1 Feb 2017
| url = http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
}}</ref>

<ref name="HelmfridS201609">{{citation
| last1 = Helmfrid | first1 = Sten | authorlink1 = Sten Helmfrid
| title = Studies on Cognitive Behavioral Therapy and Graded Exercise Therapy for ME/CFS are misleading
| journal = Socialmedicinsk tidskrift
| date = Sep 2016
| url = https://www.researchgate.net/publication/309351210_Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for_MECFS_are_misleading
}}</ref>

<ref name="HydeByr20150122ftm">{{citation
| last1 = Hyde | first1 = Byron | authorlink1 = Byron Hyde
| title = Follow the money
| journal = TheOtherSideOfTheStretcher Blog
| date = 22 January 2015
| url = https://theothersideofthestretcher.wordpress.com/2015/01/22/follow-the-money/
}}</ref>

<ref name="IndepIE20151028">{{citation
| last1 = Independent (IE)
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise' / Oxford University has found ME is not actually a chronic illness
| date = 28 October 2015
| url = https://www.independent.ie/life/health-wellbeing/chronic-fatigue-syndrome-sufferers-can-overcome-symptoms-of-me-with-positive-thinking-and-exercise-34148290.html
}}</ref>

<ref name="iNews20160819FM">{{citation
| last1 = iNews UK
| last2 = Felicity Morse
| title = Chronic Fatigue Syndrome sufferers have just had a small victory
| date = 19 Aug 2016
| url = https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
}}</ref>

<ref name="iNews20160819PG">{{citation
| last1 = iNews UK
| last2 = Paul Gallagher
| title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
| date = 19 Aug 2016
| url = https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
}}</ref>

<ref name="InvIME20151114">{{citation
| last1 = Invest in ME (IIME) | authorlink1 = Invest in ME
| title = Letter to the Editor of the Lancet – The PACE Trial
| date = 14 Nov 2015
| url = http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf
}}</ref>

<ref name="JasonLA201702">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| title = The PACE trial missteps on pacing and patient selection
| journal = Journal of Health Psychology | volume = 22 | issue = 9 | page = 1141-1145
| date = Feb 2017
| url = http://journals.sagepub.com/doi/full/10.1177/1359105317695801
| doi = 10.1177/1359105317695801
}}</ref>

<ref name="JasonLA2016casedef">{{citation
| last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason
| last2 = McManimen | first2 = Stephanie | authorlink2 = Stephanie McManimen
| last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist
| last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown
| last5 = Furst | first5 = Jacob | authorlink5 = Jacob Furst
| last6 = Newton | first6 = Julia L | authorlink6 = Julia Newton
| last7 = Strand | first7 = Elin Bolle | authorlink7 = Elin Strand
| title = Case definitions integrating empiric and consensus perspectives
| type = Article
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 1 | page = 1-23
| date = Jan 2016
| doi = 10.1080/21641846.2015.1124520
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1124520?journalCode=rftg20
| lay-url = http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
}}</ref>

<ref name="johnthejack20160629">{{citation
| last1 = JohnTheJack | first1 = | authorlink1 =
| url = https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
| journal = JohnTheJack Blog
| date = 29 Jun 2016
| title = Using public money to keep publicly funded data from the public
}}</ref>

<ref name="Juenger2012">{{citation
| last1 = Juenger | first1 = J | authorlink1 = Jana Juenger
| last2 = Schellberg | first2 = D | authorlink2 = D Schellberg
| last3 = Kraemer | first3 = S | authorlink3 = S Kraemer
| last4 = Haunstetter | first4 = A | authorlink4 = A Haunstetter
| last5 = Zugck | first5 = C | authorlink5 = C Zugck
| last6 = Herzog | first6 = W | authorlink6 = W Herzog
| last7 = Haass | first7 = M | authorlink7 = M Haass
| display-authors = 3
| title = Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables
| journal = Heart | date = Mar 2002 | volume = 87 | issue = 3 | page = 235–241
| pmid = 1767036 | doi =
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767036/
}}</ref>

<ref name="KempPet201602">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = PACE Trial Analysis
| date = Feb 2016
| url = https://docs.google.com/document/d/1AqCB7ZywQGYyR8fz5QICu4PDHvJt_RXjebNJah_Dz7U/view
}}</ref>

<ref name="KempPet20160217">{{citation
| last1 = Kemp | first1 = Peter | authorlink1 = Peter Kemp
| title = The PACE Trial: Making up Recovery to suit themselves
| date = 17 February 2016
| url = https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/view
}}</ref>

<ref name="KennedyAng20121119">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Statement re Simon Wessely and claims of harassment
| journal = Academia
| date = 19 Nov 2012
| url = https://www.academia.edu/6801706/Statement_re_Simon_Wessely_and_claims_of_harassment
}}</ref>

<ref name="KennedyAng20160210">{{citation
| last1 = Kennedy | first1 = Angela | authorlink1 = Angela Kennedy
| title = Summary of my specific concerns about PACE with annotated bibliography
| journal = PACE Documents blogspot
| date = 10 Feb 2016
| url = http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
}}</ref>

<ref name="Kindlon2011">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| journal = Bulletin of the IACFS/ME | volume = 19 | issue = 2 | page = 59-111
| date = 2011
| url = http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
}}</ref>

<ref name="Kindlon20130830bmj6559900">{{citation
| last1 = Kindlon | first1 = Tom | authorlink1 = Tom Kindlon
| title = (correspondence) Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
| journal = BMJ
| date = 30 Aug 2013
| doi = 10.1136/bmj.f5355
| url = http://www.bmj.com/content/347/bmj.f5355/rr/659900
}}</ref>

<ref name="LawsKth201511ptah">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Thoughts about Holes
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html
| journal = LawsDystopia Blog
| date = 1 Nov 2015
}}</ref>

<ref name="LawsKth201511sfs">{{citation
| last1 = Laws | first1 = Keith | authorlink1 = Keith Laws
| title = PACE - Song for the Siren
| url = http://keithsneuroblog.blogspot.co.uk/2015/11/song-for-siren.html
| journal = LawsDystopia Blog
| date = 6 Nov 2015
}}</ref>

<ref name="LeeSonia-slide">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (slides)
| url = https://figshare.com/articles/PACE_Trial_Critical_Appraisal_slides_/4685074
| date = 23 Feb 2017
| doi = 10.6084/m9.figshare.4685074.v1
}}</ref>
<ref name="LeeSonia-video">{{citation
| last1 = Lee | first1 = Sonia | authorlink1 = Sonia Lee
| title = PACE Trial: Critical Appraisal (video)
| url = https://www.youtube.com/watch?v=7As_edvTIoA
| date = 23 Feb 2017
}}</ref>

<ref name="Lewandowsky20160125">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| last2 = Bishop | first2 = Dorothy | authorlink2 = Dorothy Bishop
| title = Research integrity: Don't let transparency damage science
| journal = Nature News
| date = 25 Jan 2016
| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219
}}</ref>
<ref name="Lewandowsky20160204">{{citation
| last1 = Lewandowsky | first1 = Stephan | authorlink1 = Stephan Lewandowsky
| title = Most Christians are definitely not terrorists
| journal = Shaping Tomorrows World (blogs)
| date = 4 Feb 2016
| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html
| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html
| archive-date = 21 Sep 2017
}}</ref>

<ref name="NYT20110218">{{citation
| last1 = New York Times
| date = 17 Feb 2011
| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
| url = http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0
}}</ref>

<ref name="MEACTION201505pvpt">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Patient view of the PACE trial controversy
| journal = #MEAction
| date = May 2015
| url = http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf
}}</ref>
<ref name="MEAction20151028ptcg">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE trial controversy grows
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/2015/10/28/pace-trial-controversy-grows/
}}</ref>
<ref name="MEAction20151028psymed">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in Psychological Medicine
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-psychological-medicine/
}}</ref>
<ref name="MEAction20151028lancet">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = What's Wrong in the Lancet
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/whats-wrong-in-the-lancet/
}}</ref>
<ref name="MEACTION20151028pto">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = PACE Trial Overview
| journal = #MEAction
| date = 28 Oct 2015
| url = http://www.meaction.net/pace-trial/
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEAction20151116petition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Call for HHS to Investigate Pace
| journal = #MEAction
| date = 16 Nov 2015
| url = http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
}}</ref>

<ref name="MEAction20160201victim">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Tuller: PACE authors "wrapping themselves in victimhood"
| date = 1 Feb 2016
| url = http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/
}}</ref>

<ref name="MEACTIONpacepetitiondelivered">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = #MEAction delivers Lancet petition, makes Wall Street Journal
| journal = #MEAction
| date = Mar 2016
| url = http://www.meaction.net/2016/03/08/meaction-delivers-lancet-pace-petition-makes-wall-street-journal/
}}</ref>

<ref name="MEACTION20160709qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL spend £250,000 on PACE data tribunal
| journal = #MEAction
| date = 9 Jul 2016
| url = http://www.meaction.net/2016/07/09/qmul-spends-on-pace-tribunal/
}}</ref>

<ref name="MEAction20160816">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Tribunal orders release of PACE data
| journal = #MEAction
| date = 16 Aug 2016
| url = http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
}}</ref>

<ref name="MEAction20160817qmul">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = QMUL "studying" PACE data-release ruling
| journal = #MEAction
| date = 17 Aug 2016
| url = http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/
}}</ref>

<ref name="MEACTION20160818ahrq">{{citation
| last1 = Dimmock | first1 = Mary | authorlink1 = Mary Dimmock
| title = AHRQ agrees: GET useless, CBT ineffective
| journal = #MEAction
| date = 18 Aug 2016
| url = http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective
}}</ref>

<ref name="MEACTION20160905">{{citation
| last1 = Anderssen | first1 = Alex | authorlink1 = Alex Anderssen
| title = Lancet Rejects Scientists' PACE Letter
| journal = #MEAction
| date = 5 Sep 2016
| url = http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/
}}</ref>

<ref name="MEACTUK20110416">{{citation
| author = ME Action UK | authorlink1 = MEActionUK
| date = 16 Apr 2011
| title = The Media and ME
| url = http://www.meactionuk.org.uk/The-Media-and-ME.htm
}}</ref>

<ref name="MEASSUK20131023">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 23 Oct 2013
| title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold
| url = http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
}}</ref>
<ref name="MEASSUK20150529survey">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 2015
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEASSUK20151028press">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| title = Press release: We challenge the PACE Trial follow-up report in today’s ‘Lancet Psychiatry’
| date = 28 October 2015
| url = http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
}}</ref>

<ref name="MedNewsToday2013">{{citation
| last1 = Medical News Today
| title = Chronic Fatigue Treatments Lead To Recovery In Trial
| date = 1 Feb 2013
| url = http://www.medicalnewstoday.com/articles/255720.php
}}</ref>

<ref name="MEMilitant20171008">{{citation
| last1 = MEMilitant
| title = RC Psych previously smeared patients - Will this change?
| journal = Twitter
| date = 8 Oct 2017
| url = https://twitter.com/MEMilitant1/status/916678145696325632
| archive-url = https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632
| archive-date = 28 Mar 2018
}}</ref>

<ref name="Mitchell20110517">{{citation
| last1 = Mitchell | first1 = John T, Jnr | authorlink1 = John Mitchell
| title = (correspondence) The PACE trial in chronic fatigue syndrome
| journal = The Lancet
| date = 17 May 2011
| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60683-1/fulltext
}}</ref>

<ref name="MyhillS201708-video">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = MAIMES (Medical Abuse in ME Sufferers) - The Time Has Come To End The Abuse (video)
| date = 22 Aug 2017
| url = https://www.youtube.com/watch?v=IOXCjZPboFw
}}</ref>

<ref name="NICEguideCG53">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management
| date = Aug 2007
| url = http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
}}</ref>
<ref name="NICEguideCG53static">{{citation
| author = NICE guidelines (UK)
| title = NICE guidelines (CG53) - Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): review decision
| date = Feb 2014
| url = https://www.nice.org.uk/guidance/CG53/documents/cg53-chronic-fatigue-syndrome-myalgic-encephalomyelitis-static-list-review-decision2
}}</ref>

<ref name="NIHP2PFIN">{{citation
| author = National Institutes of Health (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-url = https://webcache.googleusercontent.com/search?q=cache:MS4x7xhmPusJ:https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
| archive-date = 2016
}}</ref>

<ref name="PhoenixRisingPWFOI">{{citation
| last1 = (various authors)
| title = Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws
| date = 27 Sep 2015
| journal = Phoenix Rising (ME/CFS support forums)
| url = http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
}}</ref>

<ref name="PLOSONE-F10.1371">{{citation
| last1 = PLoS One editors
| title = PLoS ONE editor's notice: Update on follow up
| journal = PLoS One
| date = 7 Mar 2016
| doi = 10.1371/journal.pone.0040808
| url = http://journals.plos.org/plosone/article/comment?id=info%3Adoi%2F10.1371%2Fannotation%2F8c1798c4-e4bb-4e1e-b949-49155bfb7932
}}</ref>

<ref name="QMUL20160816">{{citation
| last1 = Queen Mary University of London (QMUL)
| title = Statement: Disclosure of PACE trial data under the Freedom of Information Act
| journal = QMUL website
| date = 16 Aug 2016
| url = http://www.qmul.ac.uk/media/news/items/smd/179331.html
}}</ref>

<ref name="Rehmeyer20151113">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Hope for Chronic Fatigue Syndrome
| journal = Slate
| date = 13 Nov 2015
| url = http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html
}}</ref>

<ref name="Rehmeyer20160808">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Rehmeyer makes statisticians' jaws drop over PACE
| journal = #MEAction
| date = 8 August 2016
| url = http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
}}</ref>

<ref name="Rehmeyer20160921">{{citation
| last1 = Rehmeyer | first1 = Julie | authorlink1 = Julie Rehmeyer
| title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
| journal = Stat News
| date = 21 Sep 2016
| url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
}}</ref>

<ref name="RetractWatch20160817">{{citation
| last1 = Retraction Watch
| title = UK tribunal orders release of data from controversial chronic fatigue syndrome study
| date = 17 Aug 2016
| url = http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/
}}</ref>

<ref name="Reuters20110217">{{citation
| last1 = Reuters
| title = Pushing limits can help chronic fatigue patients
| date = 17 Feb 2011
| url = http://www.reuters.com/article/us-fatigue-me-idUSTRE71H02320110218
}}</ref>

<ref name="RAE2008cost">{{citation
| author = University of Edinburgh
| title = RA5a: Research environment and esteem
| date = 2008
| url = http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181
}}</ref>

<ref name="ScienceMag20110906">{{citation
| last1 = Lowe | first1 = Derek | authorlink1 =
| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway
| journal = Science Translational Medicine Blog
| date = 6 Sep 2011
| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
}}</ref>

<ref name="ScienceMag20151027">{{citation
| last1 = Cohen | first1 = Jon | authorlink1 =
| title = Criticism mounts of a long-controversial chronic fatigue study
| journal = Science Magazine
| date = 27 Oct 2015
| url = http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study
}}</ref>

<ref name="Schneider20160219">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
| journal = ForBetterScience Blog
| date = 8 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
| last1 = D.G.
| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Index of PACE Trial articles
| journal = ForBetterScience Blog
| url = https://forbetterscience.com/?s=pace+trial
}}</ref>

<ref name="Shepherd20160118">{{citation
| last1 = Shepherd | first1 = Charles | authorlink1 = Charles Shepherd
| title = (correspondence) Patient reaction to the PACE trial
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00546-5/fulltext
}}</ref>

<ref name="SMCUK201110TOP">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley
| title = Threats of Persecution
| journal = Science Media Centre (UK) | issue = SMC anniversary brochure, page 16
| date = Oct 2011
| url = http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
| archive-date = 7 Aug 2014
}}</ref>

<ref name="SMCUK201302ETE">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Blithell | first2 = Claire | authorlink2 = Claire Blithell
| title = Supporting experts targeted by extremists
| journal = Science Media Centre (UK) | issue = Review of First Three Years in Mental Health Research, page 10
| date = Feb 2013
| url = http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
| archive-date = 18 Apr 2016
}}</ref>

<ref name="SMCUK20131031">{{citation
| last1 = Science Media Centre (UK) | authorlink1 = Science Media Centre (UK)
| last2 = Fox | first2 = Fiona | authorlink2 = Fiona Fox
| title = SMC - malicious use of FOI against researchers
| journal = Science Media Centre (UK) | issue = (email)
| date = 31 Oct 2013
| url = https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
}}</ref>

<ref name="SmithR20151216">{{citation
| last1 = Smith | first1 = Richard | authorlink1 = Richard Smith
| title = QMUL and King’s college should release data from the PACE trial
| journal = BMJ Blogs
| date = 16 Dec 2015
| url = http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
}}</ref>

<ref name="StuffNon20121117">{{citation
| title = ME/CFS: Harassment of Researchers
| date = 17 Nov 2012
| journal = Stuff and Nonsense Blog
| url = https://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#more-4505
}}</ref>

<ref name="SunTimesUK20130505">{{citation
| last1 = The Sunday Times (UK)
| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
| date = 5 May 2013
| url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
}}</ref>

<ref name="SwissRe2011">{{citation
| last1 = White | first1 = Peter D | authorlink1 = Peter White
| title = Managing claims for chronic fatigue the active way
| journal = Swiss Re (insurance)
| date = 2011
| url = http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html
| archive-url = https://pbs.twimg.com/media/CYt8snwWcAApi_1.png:large
| archive-date = 25 Jul 2013
}}</ref>

<ref name="TatchellP20160921">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Isaac Marks - Lessons not Learnt
| journal = Twitter
| date = 21 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778256247300775936
}}</ref>
<ref name="TatchellP20160923">{{citation
| last1 = Tatchell | first1 = Peter | authorlink1 = Peter Tatchell
| title = Worrying how the DWP treats disabled people
| journal = Twitter
| date = 23 Sep 2016
| url = https://twitter.com/PeterTatchell/status/778981017768058881
}}</ref>

<ref name="Telegraph20110729">{{citation
| last1 = The Telegraph (UK)
| title = ME researchers 'receive death threats from sufferers'
| date = 29 July 2011
| url = http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html
}}</ref>

<ref name="Telegraph20120928">{{citation
| last1 = The Telegraph (UK)
| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
| date = 28 Sep 2012
| url = http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/
}}</ref>

<ref name="Telegraph20151028">{{citation
| last1 = The Telegraph (UK)
| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
| url = http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html
}}</ref>

<ref name="Torjesen20151028">{{citation
| last1 = Torjesen | first1 = Ingrid
| title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome
| journal = BMJ
| date = 28 Oct 2015
| url = http://www.bmj.com/content/351/bmj.h5771
}}</ref>



<ref name="Tuller20151021">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 1
| journal = Virology Blog | date = 21 Oct 2015
| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
}}</ref>
<ref name="Tuller20151022">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 2
| journal = Virology Blog | date = 22 Oct 2015
| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
}}</ref>
<ref name="Tuller20151023">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - Part 3
| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
}}</ref>
<ref name="Tuller20151030a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = PACE trial investigators respond to David Tuller
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
}}</ref>
<ref name="Tuller20151030b">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = David Tuller responds to PACE trial investigators
| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
}}</ref>
<ref name="Tuller20151104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?
| journal = Virology Blog | date = 4 Nov 2015
| url = http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/
}}</ref>
<ref name="Tuller20151109">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?
| journal = Virology Blog | date = 9 Nov 2015
| url = http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
}}</ref>
<ref name="Tuller20151222">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = Revisiting the PLoS One economics analysis of PACE
| journal = Virology Blog | date = 22 Dec 2015
| url = http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
}}</ref>
<ref name="Tuller20151117">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?
| journal = Virology Blog | date = 17 Nov 2015
| url = http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
}}</ref>
<ref name="Tuller20160104">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues
| journal = Virology Blog | date = 4 Jan 2016
| url = http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
}}</ref>
<ref name="Tuller20160107">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?
| journal = Virology Blog | date = 7 Jan 2016
| url = http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/
}}</ref>
<ref name="Tuller20160119a">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: More Nonsense from The Lancet Psychiatry
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/
}}</ref>
<ref name="Tuller201601119v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = At least we're not vexatious
| journal = Virology Blog | date = 19 Jan 2016
| url = http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/
}}</ref>
<ref name="Tuller20160201">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Trial By Error, Continued: A Few Words About “Harassment”
| journal = Virology Blog | date = 1 Feb 2016
| url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
}}</ref>
<ref name="Tuller20160227-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Interview with David Tuller, Amsterdam
| type = video
| date = 27 Feb 2016
| url = https://www.youtube.com/watch?v=UN1bYhkDHA4
}}</ref>
<ref name="Tuller20160228-v">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Speech by David Tuller, Amsterdam
| type = video
| date = 28 Feb 2016
| url = https://www.youtube.com/watch?v=1fS6Gzc52VI
}}</ref>

<ref name="Tuller20160710">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| last2 = Racaniello | first2 = Vincent | authorlink2 = Vincent Racaniello
| title = TWiV 397: Trial by Error
| type = video
| journal = This Week In Virology (podcast)
| date = 10 July 2016
| url = http://www.microbe.tv/twiv/twiv-397/
}}</ref>

<ref name="TWIV20160821">{{citation
| last1 = Racaniello | first1 = Vincent | authorlink1 = Vincent Racaniello
| title = TWiV 403: It’s not easy being vaccine
| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
| url = http://www.microbe.tv/twiv/twiv-403/
}}</ref>

<ref name="viroblogMECFS">{{citation
| url = http://www.virology.ws/mecfs/
| title = List of ME/CFS articles published at Virology Blog
}}</ref>

<ref name="Twisk20160118">{{citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>

<ref name="TymesTrust2014bts">{{citation
| last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust
| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)
| date = Aug 2014
| url = https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0
}}</ref>

<ref name="UKParl20130206-video">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (video)
| date = 6 Feb 2013
| url = https://www.youtube.com/watch?v=Fo5hdL7zXxQ&feature=youtu.be&t=1
}}</ref>
<ref name="UKParl20130206-transcript">{{citation
| author1 = UK Parliament
| title = UK House of Lords, Debates the PACE Trial - 6 February 2013 (transcript)
| date = 6 Feb 2013
| url = https://hansard.parliament.uk/Lords/2013-02-06/debates/130206114000195/PACETrialChronicFatigueSyndromeMyalgicEncephalomyelitis
}}</ref>
<ref name="UKParl20180220-video">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (video)
| date = 20 Feb 2018
| url = http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59
}}</ref>
<ref name="UKParl20180220-transcript">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (transcript)
| date = 20 Feb 2018
| url = https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
}}</ref>
<ref name="UKParl20180220-video2">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #2)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=UwCEvnXZTlA
}}</ref>
<ref name="UKParl20180220-video3">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #3)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=XpVfZqcjeVY
}}</ref>
<ref name="UKParl20180220-video4">{{citation
| author1 = UK Parliament
| title = PACE trial and its effect on people with ME (alternate video #4)
| date = 20 Feb 2018
| url = https://www.youtube.com/watch?v=frhFmr7rbzc
}}</ref>

<ref name="VanElzakker2016">{{citation
| last1 = VanElzakker | first1 = Michael | authorlink1 = Michael VanElzakker
| title = twitter comments
| date = 2016
| url = https://twitter.com/MBVanElzakker
}}</ref>

<ref name="VinkM2016">{{citation
| last1 = Vink | first1 = Mark | authorlink1 = Mark Vink
| title = The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
| journal = J Neurol Neurobiol | volume = 2 | issue = 3
| date = 30 Mar 2016
| doi = 10.16966/2379-7150.124
| url = http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
}}</ref>

<ref name="WDDTY20160822">{{citation
| author = What Doctors Don't Tell You (website)
| title = Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
| date = 22 Aug 2016
| url = https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html
}}</ref>

<ref name="WebMD20110217">{{citation
| last1 = WebMD (USA)
| title = Study Shows Cognitive Behavioral Therapy, Exercise Are Safe Ways to Treat CFS Symptoms
| date = 17 Feb 2011
| url = http://www.webmd.com/chronic-fatigue-syndrome/news/20110217/therapy-exercise-help-chronic-fatigue-syndrome
}}</ref>

<ref name="WSJ20160307">{{citation
| last1 = Wall Street Journal
| last2 = Amy Dockser Marcus
| title = Patients, Scientists Fight Over Research-Data Access
| date = 7 Mar 2016
| url = http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
}}</ref>

<ref name="ZimmerC20110821">{{citation
| last1 = Zimmer | first1 = Carl | authorlink1 = Carl Zimmer
| title = Chronic Fatigue Syndrome: Death threats for scientists?
| journal = Discover Magazine
| date = 21 Aug 2011
| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

<ref name="MERecoverySong">{{citation
| last1 = ME Analysis
| title = ME Recovery Song
| type = video
| date = 27 Apr 2014
| url = https://www.youtube.com/watch?v=QbKTBMyZfX0
}}</ref>

</references>

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]