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Action for ME

2020-07-03T16:28:49Z

Canary:adding Robert Courtney RIP 2018

{{Cleanup|date=March 2019|reason=Controversy section has unsourced statements. Improve readability.}}
[[File:Action for ME Logo.png|alt=Action for ME log|thumb|right]]'''Action for ME''', or '''AfME''', is a charity registered in England and Wales: 1036419 and registered in Scotland: SC040452.<ref>{{Cite web|url=https://www.actionforme.org.uk/|title=Home|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref>

==Aims==
The 2013 Action for ME Statement of Strategic Intent outlines three strategic touchstones for 2013-2016: ''Inform and Influence'', ''Empower and Support'', ''Research''. Their priorities are: Awareness and understanding, health, welfare, research, employment.<ref>{{Cite web|url=https://www.actionforme.org.uk/about-us/our-strategic-touchstones/|title=Our strategic touchstones|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref><ref>{{Cite web|url=https://www.actionforme.org.uk/uploads/pdfs/statement-strategic-intent-2013-2016.pdf|title=Action for M.E.: Statement of Strategic Intent 2013–2016|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=Action for M.E.|archive-url=|archive-date=|dead-url=|access-date=2019-11-14}}</ref>

'''Our vision, mission and values'''<ref>[https://www.actionforme.org.uk/about-us/our-vision,-mission-and-values/ Our vision, mission and values - Action for ME]</ref>
*Our vision is a world without M.E.
*Our mission is empowering people with M.E. to fulfill their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure.
*Shared values are held with high regard in our organisation and reflect how we seek to work with our supporters, partners and other key stakeholders. They reflect the attitudes, beliefs and behaviour that we value in each other and underpin our whole approach and culture.

==History==
The charity was set up in 1987 as The M.E. Action Campaign. Its founders were [[Martin Lev]], [[Sue Findlay]] and [[Clare Francis]]. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.<ref>{{Cite journal|date=2016-11-05|title=Action for ME|url=https://en.wikipedia.org/w/index.php?title=Action_for_ME&oldid=747975928|journal=Wikipedia|language=en}}</ref>

Its previous Chief Executives were [[Chris Clark]] (to 2006) and [[Peter Spencer|Sir Peter Spencer]] (2006-2012). [[Sonya Chowdhury]] took over as Chief Executive of Action for M.E. in September 2012.<ref>[https://www.actionforme.org.uk/about-us/chief-executive/ Action for ME - About Us - CEO]</ref>

In April 2017 it merged with [[Association of Young People with ME]].

AfME has for years provided the joint secretariat for the [[All Party Parliamentary Group on ME]] in the UK Westminster Parliament.

==Notable people==
*[[Sonya Chowdhury]] (Chief Executive)
*[[Julia Newton]] (Joint Medical Advisor)
*[[Gregor Purdie]] (Joint Medical Advisor)

*[[David Puttnam]]
*[[Clare Francis]] (President)

==Funding==

Action for M.E. has received UK government Department of Health (DoH) funding. It also receives funding from the Scottish Government. AFME now claims it receives no government funding. It states it support also comes from public and corporate donations.<ref>[https://www.actionforme.org.uk/make-a-difference/donate/donate-online/ Action for ME - Make a Difference]</ref>

AfME has not been transparent about its funding. It has resulted in questions even being asked in Parliament about some of its funding from the UK government. The Countess of Mar asked:

''“How much funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to the United Kingdom charity Action for ME since April 2003; for what purpose the award was made; and what were the terms under which it was made; and Whether any funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to any charities representing those with myalgic encephalomyelitis or chronic fatigue syndrome other than Action for ME since April 2003; if so, how much was awarded; to which charities; and for which purpose.”''

Lord Warner (Health) responded ''“In February 2003, Action for Myalgic Encephalomyelitis (ME) was awarded a grant of £187,000 over a three-year period to support its chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical network project. The project is intended to help all those in the field to access knowledge and share best practice on meeting the needs of patients. The Association for Youth with ME was awarded a grant in 2002 of £110,000 over a three-year period in respect of its positive living project. This involves developing a training and information programme to empower children and young people via skills workshops to voice their experience, knowledge and needs of living with CFS/ME. All voluntary organisations awarded Section 64 grants provide regular progress reports showing how they meet the objectives laid down by the grant conditions.”''<ref>{{Cite web|url=https://publications.parliament.uk/pa/ld200304/ldhansrd/vo040211/text/40211w03.htm|title=Lords Hansard text for 11 Feb 2004 (240211w03)|website=publications.parliament.uk|access-date=2019-08-31}} </ref>

This funding was provided around the time inception of the [[BPS]] and [[PACE trial]] in the UK. AfME later merged with AFYME.

==Controversy and conflicts of interest==

=== Change of charity name ===
In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission, as “chronic fatigue” is a symptom distinct from ME and CFS, and the charity subsequently dropped [[Chronic Fatigue]].<ref name=":1">{{Cite web|url=http://carersfight.blogspot.com/2010/03/16-good-reasons-to-be-very-suspicious.html|title=16 Good Reasons to be very suspicious of Action for ME.|website=16 Good Reasons to be very suspicious of Action for ME.|access-date=2019-08-19}} </ref>

=== Criticism from some ME advocates and charities ===
Some ME advocates have stated that there are many reasons to not support AfME, including an article detailing numerous reasons not to support AfME.<ref name=":1" /> Some other ME charities have refused to work with AfME.{{Citation needed}}

In a 2004 House of Lords debate, Action for ME's involvement with Professor [[Simon Wessely]] was criticised as it was supporting the [[Wessely school|Wessely school's]] CBT/GET management programme and was actively involved in the development of the new CBT/GET treatment centres.<ref>{{Cite web|url=https://hansard.parliament.uk/Lords/2004-01-22/debates/255ec089-dcad-453b-82aa-e28b91b5bed9/MyalgicEncephalomyelitis|title=Myalgic Encephalomyelitis - Hansard|website=hansard.parliament.uk|access-date=2019-08-31}} </ref>

In 2013 AfME relaunched its research strategy with ‘Action for M.E. – Placing Patient Views at the Heart of a New Research Strategy’. Its Chief Executive answered questions about the new strategy and also about the commitment to greater patient involvement on the forum Phoenix Rising.<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/action-for-m-e-placing-patient-views-at-the-heart-of-a-new-research-strategy.26865/|title=Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-31}} </ref> There were many questions left unanswered about the PACE trial, including some by the late [[Robert Courtney]] (RIP, Deceased 2018).

=== Research funding controversies ===
Action for ME had previously announced research funding for [[Esther Crawley]]<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/|title=Questions and answers|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31}}</ref> until alternative funding from elsewhere replaced AfME funding.<ref>{{Cite web|url=https://www.actionforme.org.uk/news/%E2%80%8Bpaediatric-me-research-study-update-new-funding-found/|title=Paediatric M. E. research study: alternative funding|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31|date=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

AfME continued to fund the research of [[Peter White]], principal investigator in the [[PACE trial]].<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-neurophysiology-of-pain-in-me-study-about/|title=What is the neurophysiology of pain in ME study about?|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31}} </ref>

AfME had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions. AfME's former chairman, [[Alan Cook]], was previously a chairman of an insurance company.

[[Michael Sharpe]] has said "one of the major patient charities (Action for ME) is aligning itself with a more evidence-based approach" in the [[Unum Provident]] report of 2002.<ref>{{Cite web|url=http://web.archive.org/web/20061009051749/http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#1|title=UnumProvident - CMOReport2002|date=2006-10-09|website=web.archive.org|access-date=2019-08-19}}</ref>

=== Patient advocacy ===
AfME also supported the controversial CFS/ME [[NICE guidelines]] in 2007 which were opposed by all other patient groups and charities and did not support the judicial review against them.<ref>{{Cite web|url=https://meagenda.wordpress.com/2009/02/06/me-association-fully-supports-legal-challenge-to-the-nice-guideline-on-mecfs/|title=ME Association fully supports legal challenge to the NICE Guideline on ME/CFS|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=Feb 6, 2009|website=meagenda.wordpress.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref><ref>{{Cite web|url=https://meagenda.wordpress.com/2009/08/01/concerning-a-recent-statement-and-report-published-in-the-wake-of-the-judicial-review-of-the-nice-guidelines-on-cfsme/|title=Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME|last=meagenda|date=2009-08-01|website=ME agenda|language=en|access-date=2019-08-31}} </ref> Action for ME Chief Executive at the time, [[Chris Clark]], had been involved in drawing up the 2007 [[NICE guidelines]], and had accepted considerable input from [[Simon Wessely]] about the research findings for ME/CFS treatments.

Action for ME did not sign the open letter to [[Psychological Medicine]] signed by over 100 signatories including scientists and charities.<ref>{{Cite web|url=http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/|title=An open letter to Psychological Medicine, again!|last=Tuller|first=David|authorlink=David Tuller|last2=|first2=|authorlink2=|date=|website=www.virology.ws|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2019-08-31}}</ref> Numerous patients requested and appealled to AfME to sign an open letter to Psychological Medicine in March of 20?? but after a two-month delay they issued their statement in May. AfME published its response to patient concerns regarding the use of [[cognitive behavioral therapy]] (CBT) and [[graded exercise therapy]] (GET) and the [[PACE trial]] for patients and their failure to sign to the open letter to Psychological Medicine.<ref>{{Cite web|url=https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/|title=Our Board of Trustees on CBT, GET and PACE|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31|date=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

Despite repeated requests, AfME did not make a statement about a talk that [[Esther Crawley]], who is closely associated with the charity and receives funding from AfME, presented at a renal conference that allegedly maligned patients and allegedly accused [[David Tuller]] of libel.{{citation needed}}

===<nowiki>#</nowiki>millionsmissing campaign ===
AfME did not support or promote the [[Millions Missing]] campaign in 2017 and used alternatives, but [[Sonya Chowdhury]] used the hashtag #[[MillionsMissing]] for fundraising for herself and AfME.<ref>{{Cite web|url=https://twitter.com/SonyaChowdhury/status/863000514337943552|title=Thanks so much @EmilyBeardall1 for promoting me. Can't believe 100 days has passed and we have done it! #millionsmissing|last=Chowdhury|first=Sonya|date=2017-05-12|website=@SonyaChowdhury|language=en|access-date=2019-08-31|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}} </ref>

===Funding research by Esther Crawley ===
AfME obtained money from a private corporate donor and announced that this anonymous corporate donation would fund the work of the researcher [[Esther Crawley]] and her Severe Pediatric Study via the charity.<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/|title=Questions and answers|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref> This was questioned and criticized by ME sufferers in forums but AfME removed many posts as they claimed they were defamatory for asking such questions and stated the donation was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering."<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/|title=Esther Crawley Paediatric Prevalence Study Funded by Action for ME|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-19}}</ref> In 2018 it was announced that AfME would not be funding that research, but did not provide a full explanation of the sources of the money and the reasons for doing so.<ref>{{Cite web|url=https://www.s4me.info/threads/action-for-me-terminates-by-mutual-agreement-with-the-university-of-bristol-contract-to-fund-crawley-study.1872/|title=Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study|website=Science for ME|language=en-US|access-date=2019-08-31}}</ref> AfME stated the donation would be used directly to support children instead, and that this had been agreed with the donor.

AfME have created and organised the "[[M.E./CFS International Alliance]]", a group involving M.E. advocates and charity representatives from six countries. However some organisations stated they weren't aware of their membership and ME patients have expressed concerns due to its history.<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/new-org-me-cfs-international-alliance.47920/|title=New Org!: ME/CFS International Alliance|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-31}}</ref> AfME have been protesting at the [[World Health Organization]] (WHO) in Geneva, Switzerland, under the [[Millions Missing]] campaign however patients have expressed concerns due to the WHO accepting ME as a [[:Category:Neurological disorders |neurological disease]] since 1969.<ref name=":3">{{Cite book|url=https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y|title=International Classification of Diseases|last=World Health Organization|first=|publisher=WHO|year=1969|isbn=|editor-link=|edition=Eighth revision|volume=2|location=Geneva|pages=173|chapter=|quote=Encephalomyelitis (chronic), (myalgic, benign) 323|editor-last2=|editor-link2=}}</ref>

===Criticism from other patient advocacy groups ===

[[Jane Bryant]] compiled an extensive dossier of concerns about Action for ME, prior to quitting [[myalgic encephalomyelitis]] advocacy.<ref>{{Cite web|url=https://web.archive.org/web/20090815134100/http://www.theoneclickgroup.co.uk/documents/ME-CFS_char/AFME/THE%20AFME%20DOSSIER%202004.doc|title=THE AFME DOSSIER: A DOSSIER OF CONCERNS ABOUT THE CHARITY ACTION for ME (AfME)|last=Bryant|first=Jane|authorlink=|last2=|first2=|authorlink2=|date=Aug 2006|website=THE ONE CLICK GROUP|archive-url=|archive-date=|dead-url=|access-date=}}</ref>

==Involvement in [[PACE trial]] controversy ==

AfME were involved from the beginning by supporting the [[PACE trial]] and its researchers from 2003. Archives are available of their involvement as their website pages of this involvement have been deleted.<ref>{{Cite web|url=http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml|title=Action for M.E. News - PACE Research Study Q&A|date=2003-08-04|website=web.archive.org|access-date=2019-08-31}}</ref> The PACE trial would not have been funded or conducted without patient support, which AFME provided.{{Citation needed}}

*"Despite the anger in the patient community, the investigators were able to enlist Action for ME, another major advocacy group, to help design the pacing intervention. They called their operationalization of the strategy “[[adaptive pacing therapy]],” or APT."<ref>{{Cite web|url=http://www.virology.ws/2015/10/21/trial-by-error-i/|title=TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study|last=Tuller|first=David|authorlink=David Tuller|last2=|first2=|authorlink2=|date=|website=www.virology.ws|archive-url=|archive-date=|dead-url=|access-date=2019-08-31}}</ref>

*The [[Oxford criteria]] was used for PACE trial participation. The [[PACE trial]] was designed with input from the charity, Action for ME.<ref>[http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#patients Pace Trial - Centre for Psychiatry - QMUL]</ref><ref>{{Cite web|url=https://www.meassociation.org.uk/2011/02/pace-study-trial-%e2%80%93-medical-research-council-uk-news-report-18-february-2011/|title=PACE study results – Medical Research Council (UK) news report, 18 February 2011|language=en-GB|access-date=2019-08-31}}</ref>

*"From the outset, Action for M.E. and a number of patients were involved in the design of the trial."<ref>{{Cite web|url=http://www.ayme.org.uk/news/-/asset_publisher/2uYbtahTJKdk/content/april-2011-analysis-of-pace-trial-results|website=www.ayme.org.uk|access-date=2019-08-31|title=Analysis of PACE Trial Results|date=|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

*"The major innovations in this application include close collaboration with Action for ME."<ref>[http://www.meactionuk.org.uk/Comment-on-Sir-Peter-Spencer-re-PACE.htm Comment on the statement by Sir Peter Spencer of Action for ME Margaret Williams - 19th April 2011]</ref>

Action for ME provided the requisite 'patient support' regularly cited by the PACE trial authors and collaborators since its inception in 2005 and had refused to support many patients exposing the flaws in the trial for years or criticise the flaws in the trial. It had ignored these flaws for years despite ME sufferers pointing these out and working for years to expose the trial. AfME's public positions on the trial began shifting after patients and other scientists had finally discredited the trial.{{Citation needed}}

Dr [[David Tuller]] publicly suggested in a forum on June 18th of 20?? that he would also write about AfME when he has time and is able to and stated AfME have made no apology for enabling and abetting PACE and that AfME really should take responsibility for that at this stage.<ref>{{Cite web|url=https://www.s4me.info/threads/action-for-me-have-reworked-our-treatment-and-symptom-management-page-and-updated-our-pages-on-get-and-cbt.4654/|title=Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"|website=Science for ME|language=en-US|access-date=2019-08-19}}</ref> AfME then asked to sign Dr Tuller's letter on June 20th of 20??. This apparent change of position was the day before [[Carol Monaghan]] MP's second parliamentary debate.

On August 21, 2018, ''The Times'' ran an article about an [[open letter to the Lancet]] which more than a hundred academics, ten MPs, and patient groups from around the world had signed. On August 29, 2018, Action for ME posted a statement on their new position on the PACE trial and behavioral treatments for M.E.<ref>{{Cite news|url=https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh|title=Call for review of ‘flawed’ ME research in Lancet letter|last=Science Editor|first=Tom Whipple|date=2018-08-21|work=The Times|access-date=2018-08-29|language=en|issn=0140-0460}}</ref><ref name=":0">{{Cite web|url=https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|title=The PACE trial and behavioural treatments for M.E.|last=Chowdhury|first=Sonya|website=Action for ME|access-date=2018-08-29|date=Aug 2018|authorlink=Sonya Chowdhury|last2=Action for ME|first2=|authorlink2=Action for ME|archive-url=https://web.archive.org/web/20180829192602/https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|archive-date=Aug 29, 2018|dead-url=y}}</ref><ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/what-was-the-pace-trial/|title=What was the PACE trial?|last=Action for ME|first=|authorlink=Action for ME|last2=|first2=|authorlink2=|date=|website=Action for ME|archive-url=|archive-date=|dead-url=|access-date=2019-08-30}}</ref>

==Membership==

Unlike most charities and many ME charities, AFME does not allow its paying members to become legal members of the charity and therefore have no input into the direction of the charity and voting rights.{{Citation needed}}It only recognizes its own trustees as members. Action for ME states that Supporting and Lifelong members can vote on "a selection of new and returning trustees."<ref>{{Cite web|url=https://www.actionforme.org.uk/news/correcting-some-inaccuracies-about-us-and-our-work/|title=Correcting some inaccuracies about us and our work|last=Action for ME|first=|authorlink=Action for ME|last2=|first2=|authorlink2=|date=Jun 28, 2018|website=Action for ME|archive-url=|archive-date=|dead-url=|access-date=2019-02-16}}</ref>

==Online presence==
*[https://www.actionforme.org.uk/ Website]
*[https://twitter.com/actionforme Twitter]
*[https://www.facebook.com/actionforme Facebook]
*[https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/feed YouTube]

==Charity Commission and financial details==
[http://apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithPartB.aspx?RegisteredCharityNumber=1036419&SubsidiaryNumber=0 1036419 - ACTION FOR ME]

==See also==
*[[UK CFS/ME Collaborative]]

==Learn more==

*[https://en.wikipedia.org/wiki/Action_for_ME Wikipedia - Action for ME]

==References==
{{reflist}}

[[Category:Patient groups]]
[[Category:British patient groups]]

Action for ME

2020-07-03T16:14:55Z

Canary:cleaning up and edit for repeated, superfluous info.

{{Cleanup|date=March 2019|reason=Controversy section has unsourced statements. Improve readability.}}
[[File:Action for ME Logo.png|alt=Action for ME log|thumb|right]]'''Action for ME''', or '''AfME''', is a charity registered in England and Wales: 1036419 and registered in Scotland: SC040452.<ref>{{Cite web|url=https://www.actionforme.org.uk/|title=Home|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref>

==Aims==
The 2013 Action for ME Statement of Strategic Intent outlines three strategic touchstones for 2013-2016: ''Inform and Influence'', ''Empower and Support'', ''Research''. Their priorities are: Awareness and understanding, health, welfare, research, employment.<ref>{{Cite web|url=https://www.actionforme.org.uk/about-us/our-strategic-touchstones/|title=Our strategic touchstones|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref><ref>{{Cite web|url=https://www.actionforme.org.uk/uploads/pdfs/statement-strategic-intent-2013-2016.pdf|title=Action for M.E.: Statement of Strategic Intent 2013–2016|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=Action for M.E.|archive-url=|archive-date=|dead-url=|access-date=2019-11-14}}</ref>

'''Our vision, mission and values'''<ref>[https://www.actionforme.org.uk/about-us/our-vision,-mission-and-values/ Our vision, mission and values - Action for ME]</ref>
*Our vision is a world without M.E.
*Our mission is empowering people with M.E. to fulfill their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure.
*Shared values are held with high regard in our organisation and reflect how we seek to work with our supporters, partners and other key stakeholders. They reflect the attitudes, beliefs and behaviour that we value in each other and underpin our whole approach and culture.

==History==
The charity was set up in 1987 as The M.E. Action Campaign. Its founders were [[Martin Lev]], [[Sue Findlay]] and [[Clare Francis]]. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.<ref>{{Cite journal|date=2016-11-05|title=Action for ME|url=https://en.wikipedia.org/w/index.php?title=Action_for_ME&oldid=747975928|journal=Wikipedia|language=en}}</ref>

Its previous Chief Executives were [[Chris Clark]] (to 2006) and [[Peter Spencer|Sir Peter Spencer]] (2006-2012). [[Sonya Chowdhury]] took over as Chief Executive of Action for M.E. in September 2012.<ref>[https://www.actionforme.org.uk/about-us/chief-executive/ Action for ME - About Us - CEO]</ref>

In April 2017 it merged with [[Association of Young People with ME]].

AfME has for years provided the joint secretariat for the [[All Party Parliamentary Group on ME]] in the UK Westminster Parliament.

==Notable people==
*[[Sonya Chowdhury]] (Chief Executive)
*[[Julia Newton]] (Joint Medical Advisor)
*[[Gregor Purdie]] (Joint Medical Advisor)

*[[David Puttnam]]
*[[Clare Francis]] (President)

==Funding==

Action for M.E. has received UK government Department of Health (DoH) funding. It also receives funding from the Scottish Government. AFME now claims it receives no government funding. It states it support also comes from public and corporate donations.<ref>[https://www.actionforme.org.uk/make-a-difference/donate/donate-online/ Action for ME - Make a Difference]</ref>

AfME has not been transparent about its funding. It has resulted in questions even being asked in Parliament about some of its funding from the UK government. The Countess of Mar asked:

''“How much funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to the United Kingdom charity Action for ME since April 2003; for what purpose the award was made; and what were the terms under which it was made; and Whether any funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to any charities representing those with myalgic encephalomyelitis or chronic fatigue syndrome other than Action for ME since April 2003; if so, how much was awarded; to which charities; and for which purpose.”''

Lord Warner (Health) responded ''“In February 2003, Action for Myalgic Encephalomyelitis (ME) was awarded a grant of £187,000 over a three-year period to support its chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical network project. The project is intended to help all those in the field to access knowledge and share best practice on meeting the needs of patients. The Association for Youth with ME was awarded a grant in 2002 of £110,000 over a three-year period in respect of its positive living project. This involves developing a training and information programme to empower children and young people via skills workshops to voice their experience, knowledge and needs of living with CFS/ME. All voluntary organisations awarded Section 64 grants provide regular progress reports showing how they meet the objectives laid down by the grant conditions.”''<ref>{{Cite web|url=https://publications.parliament.uk/pa/ld200304/ldhansrd/vo040211/text/40211w03.htm|title=Lords Hansard text for 11 Feb 2004 (240211w03)|website=publications.parliament.uk|access-date=2019-08-31}} </ref>

This funding was provided around the time inception of the [[BPS]] and [[PACE trial]] in the UK. AfME later merged with AFYME.

==Controversy and conflicts of interest==

=== Change of charity name ===
In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission, as “chronic fatigue” is a symptom distinct from ME and CFS, and the charity subsequently dropped [[Chronic Fatigue]].<ref name=":1">{{Cite web|url=http://carersfight.blogspot.com/2010/03/16-good-reasons-to-be-very-suspicious.html|title=16 Good Reasons to be very suspicious of Action for ME.|website=16 Good Reasons to be very suspicious of Action for ME.|access-date=2019-08-19}} </ref>

=== Criticism from some ME advocates and charities ===
Some ME advocates have stated that there are many reasons to not support AfME, including an article detailing numerous reasons not to support AfME.<ref name=":1" /> Some other ME charities have refused to work with AfME.{{Citation needed}}

In a 2004 House of Lords debate, Action for ME's involvement with Professor [[Simon Wessely]] was criticised as it was supporting the [[Wessely school|Wessely school's]] CBT/GET management programme and was actively involved in the development of the new CBT/GET treatment centres.<ref>{{Cite web|url=https://hansard.parliament.uk/Lords/2004-01-22/debates/255ec089-dcad-453b-82aa-e28b91b5bed9/MyalgicEncephalomyelitis|title=Myalgic Encephalomyelitis - Hansard|website=hansard.parliament.uk|access-date=2019-08-31}} </ref>

In 2013 AfME relaunched its research strategy with ‘Action for M.E. – Placing Patient Views at the Heart of a New Research Strategy’. Its Chief Executive answered questions about the new strategy and also about the commitment to greater patient involvement on the forum Phoenix Rising.<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/action-for-m-e-placing-patient-views-at-the-heart-of-a-new-research-strategy.26865/|title=Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-31}} </ref> There were questions unanswered about the PACE trial, including some by [[Robert Courtney]].

=== Research funding controversies ===
Action for ME had previously announced research funding for [[Esther Crawley]]<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/|title=Questions and answers|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31}}</ref> until alternative funding from elsewhere replaced AfME funding.<ref>{{Cite web|url=https://www.actionforme.org.uk/news/%E2%80%8Bpaediatric-me-research-study-update-new-funding-found/|title=Paediatric M. E. research study: alternative funding|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31|date=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

AfME continued to fund the research of [[Peter White]], principal investigator in the [[PACE trial]].<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-neurophysiology-of-pain-in-me-study-about/|title=What is the neurophysiology of pain in ME study about?|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31}} </ref>

AfME had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions. AfME's former chairman, [[Alan Cook]], was previously a chairman of an insurance company.

[[Michael Sharpe]] has said "one of the major patient charities (Action for ME) is aligning itself with a more evidence-based approach" in the [[Unum Provident]] report of 2002.<ref>{{Cite web|url=http://web.archive.org/web/20061009051749/http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#1|title=UnumProvident - CMOReport2002|date=2006-10-09|website=web.archive.org|access-date=2019-08-19}}</ref>

=== Patient advocacy ===
AfME also supported the controversial CFS/ME [[NICE guidelines]] in 2007 which were opposed by all other patient groups and charities and did not support the judicial review against them.<ref>{{Cite web|url=https://meagenda.wordpress.com/2009/02/06/me-association-fully-supports-legal-challenge-to-the-nice-guideline-on-mecfs/|title=ME Association fully supports legal challenge to the NICE Guideline on ME/CFS|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=Feb 6, 2009|website=meagenda.wordpress.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref><ref>{{Cite web|url=https://meagenda.wordpress.com/2009/08/01/concerning-a-recent-statement-and-report-published-in-the-wake-of-the-judicial-review-of-the-nice-guidelines-on-cfsme/|title=Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME|last=meagenda|date=2009-08-01|website=ME agenda|language=en|access-date=2019-08-31}} </ref> Action for ME Chief Executive at the time, [[Chris Clark]], had been involved in drawing up the 2007 [[NICE guidelines]], and had accepted considerable input from [[Simon Wessely]] about the research findings for ME/CFS treatments.

Action for ME did not sign the open letter to [[Psychological Medicine]] signed by over 100 signatories including scientists and charities.<ref>{{Cite web|url=http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/|title=An open letter to Psychological Medicine, again!|last=Tuller|first=David|authorlink=David Tuller|last2=|first2=|authorlink2=|date=|website=www.virology.ws|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2019-08-31}}</ref> Numerous patients requested and appealled to AfME to sign an open letter to Psychological Medicine in March of 20?? but after a two-month delay they issued their statement in May. AfME published its response to patient concerns regarding the use of [[cognitive behavioral therapy]] (CBT) and [[graded exercise therapy]] (GET) and the [[PACE trial]] for patients and their failure to sign to the open letter to Psychological Medicine.<ref>{{Cite web|url=https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/|title=Our Board of Trustees on CBT, GET and PACE|last=ME|first=Action for|website=Action for ME|access-date=2019-08-31|date=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

Despite repeated requests, AfME did not make a statement about a talk that [[Esther Crawley]], who is closely associated with the charity and receives funding from AfME, presented at a renal conference that allegedly maligned patients and allegedly accused [[David Tuller]] of libel.{{citation needed}}

===<nowiki>#</nowiki>millionsmissing campaign ===
AfME did not support or promote the [[Millions Missing]] campaign in 2017 and used alternatives, but [[Sonya Chowdhury]] used the hashtag #[[MillionsMissing]] for fundraising for herself and AfME.<ref>{{Cite web|url=https://twitter.com/SonyaChowdhury/status/863000514337943552|title=Thanks so much @EmilyBeardall1 for promoting me. Can't believe 100 days has passed and we have done it! #millionsmissing|last=Chowdhury|first=Sonya|date=2017-05-12|website=@SonyaChowdhury|language=en|access-date=2019-08-31|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}} </ref>

===Funding research by Esther Crawley ===
AfME obtained money from a private corporate donor and announced that this anonymous corporate donation would fund the work of the researcher [[Esther Crawley]] and her Severe Pediatric Study via the charity.<ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/|title=Questions and answers|last=ME|first=Action for|website=Action for ME|access-date=2019-08-19}}</ref> This was questioned and criticized by ME sufferers in forums but AfME removed many posts as they claimed they were defamatory for asking such questions and stated the donation was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering."<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/|title=Esther Crawley Paediatric Prevalence Study Funded by Action for ME|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-19}}</ref> In 2018 it was announced that AfME would not be funding that research, but did not provide a full explanation of the sources of the money and the reasons for doing so.<ref>{{Cite web|url=https://www.s4me.info/threads/action-for-me-terminates-by-mutual-agreement-with-the-university-of-bristol-contract-to-fund-crawley-study.1872/|title=Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study|website=Science for ME|language=en-US|access-date=2019-08-31}}</ref> AfME stated the donation would be used directly to support children instead, and that this had been agreed with the donor.

AfME have created and organised the "[[M.E./CFS International Alliance]]", a group involving M.E. advocates and charity representatives from six countries. However some organisations stated they weren't aware of their membership and ME patients have expressed concerns due to its history.<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/new-org-me-cfs-international-alliance.47920/|title=New Org!: ME/CFS International Alliance|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-08-31}}</ref> AfME have been protesting at the [[World Health Organization]] (WHO) in Geneva, Switzerland, under the [[Millions Missing]] campaign however patients have expressed concerns due to the WHO accepting ME as a [[:Category:Neurological disorders |neurological disease]] since 1969.<ref name=":3">{{Cite book|url=https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y|title=International Classification of Diseases|last=World Health Organization|first=|publisher=WHO|year=1969|isbn=|editor-link=|edition=Eighth revision|volume=2|location=Geneva|pages=173|chapter=|quote=Encephalomyelitis (chronic), (myalgic, benign) 323|editor-last2=|editor-link2=}}</ref>

===Criticism from other patient advocacy groups ===

[[Jane Bryant]] compiled an extensive dossier of concerns about Action for ME, prior to quitting [[myalgic encephalomyelitis]] advocacy.<ref>{{Cite web|url=https://web.archive.org/web/20090815134100/http://www.theoneclickgroup.co.uk/documents/ME-CFS_char/AFME/THE%20AFME%20DOSSIER%202004.doc|title=THE AFME DOSSIER: A DOSSIER OF CONCERNS ABOUT THE CHARITY ACTION for ME (AfME)|last=Bryant|first=Jane|authorlink=|last2=|first2=|authorlink2=|date=Aug 2006|website=THE ONE CLICK GROUP|archive-url=|archive-date=|dead-url=|access-date=}}</ref>

==Involvement in [[PACE trial]] controversy ==

AfME were involved from the beginning by supporting the [[PACE trial]] and its researchers from 2003. Archives are available of their involvement as their website pages of this involvement have been deleted.<ref>{{Cite web|url=http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml|title=Action for M.E. News - PACE Research Study Q&A|date=2003-08-04|website=web.archive.org|access-date=2019-08-31}}</ref> The PACE trial would not have been funded or conducted without patient support, which AFME provided.{{Citation needed}}

*"Despite the anger in the patient community, the investigators were able to enlist Action for ME, another major advocacy group, to help design the pacing intervention. They called their operationalization of the strategy “[[adaptive pacing therapy]],” or APT."<ref>{{Cite web|url=http://www.virology.ws/2015/10/21/trial-by-error-i/|title=TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study|last=Tuller|first=David|authorlink=David Tuller|last2=|first2=|authorlink2=|date=|website=www.virology.ws|archive-url=|archive-date=|dead-url=|access-date=2019-08-31}}</ref>

*The [[Oxford criteria]] was used for PACE trial participation. The [[PACE trial]] was designed with input from the charity, Action for ME.<ref>[http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#patients Pace Trial - Centre for Psychiatry - QMUL]</ref><ref>{{Cite web|url=https://www.meassociation.org.uk/2011/02/pace-study-trial-%e2%80%93-medical-research-council-uk-news-report-18-february-2011/|title=PACE study results – Medical Research Council (UK) news report, 18 February 2011|language=en-GB|access-date=2019-08-31}}</ref>

*"From the outset, Action for M.E. and a number of patients were involved in the design of the trial."<ref>{{Cite web|url=http://www.ayme.org.uk/news/-/asset_publisher/2uYbtahTJKdk/content/april-2011-analysis-of-pace-trial-results|website=www.ayme.org.uk|access-date=2019-08-31|title=Analysis of PACE Trial Results|date=|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>

*"The major innovations in this application include close collaboration with Action for ME."<ref>[http://www.meactionuk.org.uk/Comment-on-Sir-Peter-Spencer-re-PACE.htm Comment on the statement by Sir Peter Spencer of Action for ME Margaret Williams - 19th April 2011]</ref>

Action for ME provided the requisite 'patient support' regularly cited by the PACE trial authors and collaborators since its inception in 2005 and had refused to support many patients exposing the flaws in the trial for years or criticise the flaws in the trial. It had ignored these flaws for years despite ME sufferers pointing these out and working for years to expose the trial. AfME's public positions on the trial began shifting after patients and other scientists had finally discredited the trial.{{Citation needed}}

Dr [[David Tuller]] publicly suggested in a forum on June 18th of 20?? that he would also write about AfME when he has time and is able to and stated AfME have made no apology for enabling and abetting PACE and that AfME really should take responsibility for that at this stage.<ref>{{Cite web|url=https://www.s4me.info/threads/action-for-me-have-reworked-our-treatment-and-symptom-management-page-and-updated-our-pages-on-get-and-cbt.4654/|title=Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"|website=Science for ME|language=en-US|access-date=2019-08-19}}</ref> AfME then asked to sign Dr Tuller's letter on June 20th of 20??. This apparent change of position was the day before [[Carol Monaghan]] MP's second parliamentary debate.

On August 21, 2018, ''The Times'' ran an article about an [[open letter to the Lancet]] which more than a hundred academics, ten MPs, and patient groups from around the world had signed. On August 29, 2018, Action for ME posted a statement on their new position on the PACE trial and behavioral treatments for M.E.<ref>{{Cite news|url=https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh|title=Call for review of ‘flawed’ ME research in Lancet letter|last=Science Editor|first=Tom Whipple|date=2018-08-21|work=The Times|access-date=2018-08-29|language=en|issn=0140-0460}}</ref><ref name=":0">{{Cite web|url=https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|title=The PACE trial and behavioural treatments for M.E.|last=Chowdhury|first=Sonya|website=Action for ME|access-date=2018-08-29|date=Aug 2018|authorlink=Sonya Chowdhury|last2=Action for ME|first2=|authorlink2=Action for ME|archive-url=https://web.archive.org/web/20180829192602/https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|archive-date=Aug 29, 2018|dead-url=y}}</ref><ref>{{Cite web|url=https://www.actionforme.org.uk/resources/questions-and-answers/what-was-the-pace-trial/|title=What was the PACE trial?|last=Action for ME|first=|authorlink=Action for ME|last2=|first2=|authorlink2=|date=|website=Action for ME|archive-url=|archive-date=|dead-url=|access-date=2019-08-30}}</ref>

==Membership==

Unlike most charities and many ME charities, AFME does not allow its paying members to become legal members of the charity and therefore have no input into the direction of the charity and voting rights.{{Citation needed}}It only recognizes its own trustees as members. Action for ME states that Supporting and Lifelong members can vote on "a selection of new and returning trustees."<ref>{{Cite web|url=https://www.actionforme.org.uk/news/correcting-some-inaccuracies-about-us-and-our-work/|title=Correcting some inaccuracies about us and our work|last=Action for ME|first=|authorlink=Action for ME|last2=|first2=|authorlink2=|date=Jun 28, 2018|website=Action for ME|archive-url=|archive-date=|dead-url=|access-date=2019-02-16}}</ref>

==Online presence==
*[https://www.actionforme.org.uk/ Website]
*[https://twitter.com/actionforme Twitter]
*[https://www.facebook.com/actionforme Facebook]
*[https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/feed YouTube]

==Charity Commission and financial details==
[http://apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithPartB.aspx?RegisteredCharityNumber=1036419&SubsidiaryNumber=0 1036419 - ACTION FOR ME]

==See also==
*[[UK CFS/ME Collaborative]]

==Learn more==

*[https://en.wikipedia.org/wiki/Action_for_ME Wikipedia - Action for ME]

==References==
{{reflist}}

[[Category:Patient groups]]
[[Category:British patient groups]]

PACE trial

2019-04-23T17:24:36Z

Canary:Add Health Insights 2019 article

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=|issue=|quote=|author-link4=Julia DeCesare|author-link5=Rebecca Walwyn}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=NICE guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19|last2=|first2=|authorlink2=}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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" />

===Investigation by public health journalist and academic, Dr. David Tuller ===

Renewed interest in the trial came in October 2015 with public health expert and investigative journalist Dr. [[David Tuller]]'s investigative "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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the "Trial by Error" series on the PACE trial are listed below.

*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 installment)"]
*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 these concerns; Tuller made requests for comment in 2015 and 2016. Similarly, Richard Horton, editor of the ''Lancet'' has refused to respond to Tuller about these concerns or about the 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 "Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study".<ref name="Coyne20151029mb" /> He gave a talk at [[Edinburgh University]] in November 2015 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 Dr. Coyne "Results of the PACE follow-up study are uninterpretable".<ref name="CoyneLaws20160118" />

Science journalist [[Julie Rehmeyer]] published an article in [[Slate|''Slate'']] magazine in November 2015 called "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.{{Citation needed}}

Lucy Bailey, a former editor of the ''Lancet'', analysed the PACE trial and provided her comments on the controversy, concluding, "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" /> Bailey also wrote a letter to the Lancet Infectious Disease called "A case for Retraction?" and has questioned the reasons why [[actigraphy]] was dropped late in the trial.<ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>

Dr [[Mark Vink]], a family physician in the [[Netherlands]], published in the [[Journal of Neurology and Neurobiology|''Journal of Neurology and Neurobiology'']] on 30 March 2016 "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, 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 [[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|''Socialmedicinsk tidskrift'']] in September 2016 called "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" />

Dr [[Sonia Lee]], a clinical epidemiologist, published 30 slides critically appraising the PACE trial in February 2017 and concluding the PACE trial authors should "rectify or retract".<ref name="LeeSonia-slide" /><ref name="LeeSonia-video" /> Dr Lee has also wrote "Research Waste In ME/CFS" which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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. The Medical Research Council (MRC) and its Chief Executive continued to defend the trial and in a statement dated 28 August 2018 said that as funders of the PACE trial we reject the view that the scientific evidence provided by the trial was unsound <ref>{{Cite web|url=https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/|title=Criticism of the PACE trial|last=Medical Research Council|first=M. R. C.|date=2018-08-28|website=mrc.ukri.org|language=en|access-date=2019-04-09}}</ref>.

Jerome Burns in Health Insights UK published a follow up article to his 2016 articles on the PACE trial in the article headlined ‘The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out…’ The journalist stated he thought it would be big story in 2016 with lots of repercussions but the UK press largely ignored it and he revisited the story in 2019 due to professional opinions changing against CBT/GET, with the recent House of Commons debates and the impending revision of the NICE guidelines.<ref>{{Cite web|url=http://healthinsightuk.org/2019/04/22/the-claim-that-the-cure-for-the-crippling-fatigue-of-mecfs-was-to-change-your-mind-always-seemed-bizarre-now-it-really-is-on-the-way-out/|title=The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out… {{!}} HealthInsightUK|language=en-US|access-date=2019-04-23}}</ref>

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In their correspondence to BMC Psychology submitted on 31 July 2018 and published on 12 March 2019 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, with ’The PACE trial of treatments for chronic fatigue syndrome: a response to Wilshire et al’. They restated that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone." and that they found "no good reason" to change the conclusions of the PACE trial.<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

Wilshire and Kindlon also responded in BMC Psychology on 26 March 2019 with ‘Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings’.<ref>{{Cite journal|last=Wilshire|first=Carolyn E.|last2=Kindlon|first2=Tom|date=2019-03-26|title=Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings|url=https://doi.org/10.1186/s40359-019-0296-x|journal=BMC Psychology|volume=7|issue=1|pages=19|doi=10.1186/s40359-019-0296-x|issn=2050-7283|pmc=|pmid=30914065}}</ref> In the rejoinder Wilshire and Kindlon clarify the misconception in the PACE trial author’s commentary, and address the seven additional arguments they raise in defence of their conclusion. They concluded “New arguments presented by Sharpe et al. inspire some interesting reflections on the scientific process, but they fail to restore confidence in the PACE trial’s original conclusions.” It was also stated that unjustified optimism of CBT/GET fuelled by the PACE trial has caused many consequences including hindering the search for effective treatments and that the debate around the PACE trial will have implications reaching far and beyond.

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [
Sep 12, 2018 - [https://www.youtube.com/watch?v=PRCQ-kIxQyY How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==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
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| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
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| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
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</references>

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

PACE trial

2019-04-16T13:47:16Z

Canary:add response to Sharpe, Goldsmith and Chalder by Wilshire and Kindlon

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=|issue=|quote=|author-link4=Julia DeCesare|author-link5=Rebecca Walwyn}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=NICE guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19|last2=|first2=|authorlink2=}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the Trial by Error Series on the PACE trial are listed below.

*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 the 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?' and has questioned the reasons why actigraphy was dropped late in the trial <ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>.

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 [[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" />

Dr [[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" />. Dr Lee has also wrote 'Research Waste In ME/CFS' which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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. The Medical Research Council (MRC) and its Chief Executive continued to defend the trial and in a statement dated 28 August 2018 said that as funders of the PACE trial we reject the view that the scientific evidence provided by the trial was unsound <ref>{{Cite web|url=https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/|title=Criticism of the PACE trial|last=Medical Research Council|first=M. R. C.|date=2018-08-28|website=mrc.ukri.org|language=en|access-date=2019-04-09}}</ref>.

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In their correspondence to BMC Psychology submitted on 31 July 2018 and published on 12 March 2019 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, with ’The PACE trial of treatments for chronic fatigue syndrome: a response to Wilshire et al’. They restated that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone." and that they found "no good reason" to change the conclusions of the PACE trial.<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

Wilshire and Kindlon also responded in BMC Psychology on 26 March 2019 with ‘Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings’.<ref>{{Cite journal|last=Wilshire|first=Carolyn E.|last2=Kindlon|first2=Tom|date=2019-03-26|title=Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings|url=https://doi.org/10.1186/s40359-019-0296-x|journal=BMC Psychology|volume=7|issue=1|pages=19|doi=10.1186/s40359-019-0296-x|issn=2050-7283|pmc=PMC6434781|pmid=30914065}}</ref> In the rejoinder Wilshire and Kindlon clarify the misconception in the PACE trial author’s commentary, and address the seven additional arguments they raise in defence of their conclusion. They concluded “New arguments presented by Sharpe et al. inspire some interesting reflections on the scientific process, but they fail to restore confidence in the PACE trial’s original conclusions.” It was also stated that unjustified optimism of CBT/GET fuelled by the PACE trial has caused many consequences including hindering the search for effective treatments and that the debate around the PACE trial will have implications reaching far and beyond.

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [http://irvinginstitute.columbia.edu/pdf/How_Not_to_Conduct_in_Randomized_Clinical_Trial_Levin.pdf How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center (Slides)
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==References==

<references>
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[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2019-04-16T13:30:08Z

Canary:PACE trial authors response to Wilshire et al

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=|issue=|quote=|author-link4=Julia DeCesare|author-link5=Rebecca Walwyn}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=NICE guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19|last2=|first2=|authorlink2=}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the Trial by Error Series on the PACE trial are listed below.

*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 the 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?' and has questioned the reasons why actigraphy was dropped late in the trial <ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>.

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 [[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" />

Dr [[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" />. Dr Lee has also wrote 'Research Waste In ME/CFS' which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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. The Medical Research Council (MRC) and its Chief Executive continued to defend the trial and in a statement dated 28 August 2018 said that as funders of the PACE trial we reject the view that the scientific evidence provided by the trial was unsound <ref>{{Cite web|url=https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/|title=Criticism of the PACE trial|last=Medical Research Council|first=M. R. C.|date=2018-08-28|website=mrc.ukri.org|language=en|access-date=2019-04-09}}</ref>.

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In their correspondence to BMC Psychology submitted on 31 July 2018 and published on 12 March 2019 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, with ’The PACE trial of treatments for chronic fatigue syndrome: a response to Wilshire et al’. They restated that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone." and that they found "no good reason" to change the conclusions of the PACE trial.<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [http://irvinginstitute.columbia.edu/pdf/How_Not_to_Conduct_in_Randomized_Clinical_Trial_Levin.pdf How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center (Slides)
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==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
| 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
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}}</ref>
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| title = PACE trial and its effect on people with ME (transcript)
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}}</ref>
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</references>

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

PACE trial

2019-04-16T13:17:43Z

Canary:a lot of changes in post and disagree

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=|issue=|quote=|author-link4=Julia DeCesare|author-link5=Rebecca Walwyn}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=NICE guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19|last2=|first2=|authorlink2=}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the Trial by Error Series on the PACE trial are listed below.

*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 the 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?' and has questioned the reasons why actigraphy was dropped late in the trial <ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>.

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 [[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" />

Dr [[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" />. Dr Lee has also wrote 'Research Waste In ME/CFS' which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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. The Medical Research Council (MRC) and its Chief Executive continued to defend the trial and in a statement dated 28 August 2018 said that as funders of the PACE trial we reject the view that the scientific evidence provided by the trial was unsound <ref>{{Cite web|url=https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/|title=Criticism of the PACE trial|last=Medical Research Council|first=M. R. C.|date=2018-08-28|website=mrc.ukri.org|language=en|access-date=2019-04-09}}</ref>.

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, concluding that they found "no good reason" to change the conclusions of the PACE trial, and restating that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone."<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [http://irvinginstitute.columbia.edu/pdf/How_Not_to_Conduct_in_Randomized_Clinical_Trial_Levin.pdf How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center (Slides)
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==References==

<references>
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<ref name="pace2015corrlanpsy0114-5">{{citation
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<ref name="pace2015FU">{{citation
| last1 = Sharpe | first1 = M | authorlink1 = Michael Sharpe
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| last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson
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| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
| journal = The Lancet Psychiatry | volume = 2 | page = 1067-74
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| 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
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}}</ref>
<ref name="StuffNon20121117">{{citation
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| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness
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| title = ME researchers 'receive death threats from sufferers'
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| title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade
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| last2 = Sarah Knapton
| date = 28 Oct 2015
| title = Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise
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| url = http://www.virology.ws/2015/10/21/trial-by-error-i/
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| url = http://www.virology.ws/2015/10/22/trial-by-error-ii/
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| journal = Virology Blog | date = 23 Oct 2015
| url = http://www.virology.ws/2015/10/23/trial-by-error-iii/
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<ref name="Tuller20151030a">{{citation
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| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/
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<ref name="Tuller20151030b">{{citation
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| journal = Virology Blog | date = 30 Oct 2015
| url = http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/
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| 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/
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<ref name="Tuller20151109">{{citation
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| 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/
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<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
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| 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/
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| 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/
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<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/
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<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
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| 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/
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<ref name="TWIV20160821">{{citation
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| journal = This Week In Virology (podcast)
| date = 21 Aug 2016
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| 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
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</references>

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

Carol Monaghan

2019-04-15T12:14:06Z

Canary:"Glasgow North West" not "Glasgow West"

[[File:Carol Monaghan.jpg|thumb|right|200px]]
'''Carol Monaghan''' MP is a [[Scottish National Party]] member of the [[UK]] Parliament, representing Glasgow North West.<ref>{{Cite web|url=https://www.snp.org/your-team/carol-monaghan/|title=Carol Monaghan|last=Scottish National Party|first=|authorlink=Scottish National Party|last2=|first2=|authorlink2=|date=2018-09-04|website=Scottish National Party|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>
{{Quote_frame|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.2|Carol Monaghan MP|''PACE Trial: People with ME'', House of Commons Hansard Debate, Feb 20, 2018}}

==Committees==
Carol Monaghan was appointed to the [[:Category:UK Parliament Science and Technology Committee|UK Parliament Science and Technology Committee]] in 2017.<ref name="2017sciencetech">{{Cite web|url=https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/membership/|title=Membership - Science and Technology Committee|website=UK Parliament|language=English|access-date=2019-01-28}}</ref>

==Parliamentary debates and business==
<embedvideo service="youtube" description="Carol Monaghan MP - Children with ME. Appropriate ME Treatment debate, Jan 24th 2019." dimensions="400" alignment="right" container="frame">https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0</embedvideo>Carol Monaghan MP has led three UK Parliamentary debates in Westminster.

* Feb 20, 2018, [[PACE_trial#Second_Parliamentary_debate_on_PACE_Trial| ''PACE trial and its effect on people with ME'']] [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME (Transcript)]<ref>{{Cite web|url=https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME|title=PACE Trial: People with ME - Hansard|last=|first=|date=Feb 20, 2018|website=hansard.parliament.uk|series=Volume 636|publisher=UK Parliament Hansard|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29}}</ref>

* Jun 21, 2018, [[UK_Parliament_Grand_Committee_Room_debate_21st_June_2018|''M.E. Treatment and Research'', UK Parliament Grand Committee Room debate]]

* Oct 30, 2018, [https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00 ''Backbench Business Committee'' - Extract (Video)]<ref>{{Cite web|url=https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00|title=Backbench Business Committee - EXTRACT|last=Monaghan|first=Carol|last2=Morgan|first2=Nicky|date=Oct 30, 2018|website=parliamentlive.tv|archive-url=|archive-date=|dead-url=|access-date=2018-10-30|last3=Hopkins|first3=Kelvin|last4=Pound|first4=Steve|authorlink=Carol Monaghan|authorlink2=Nicky Morgan|authorlink4=Stephen Pound|authorlink3=Kelvin Hopkins}}</ref>

* Jan 24, 2019, ''[[UK Parliament Commons Chamber debate 24th January 2019|Appropriate M.E. treatment motion and Backbench debate]]<ref>{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment|title=Appropriate ME Treatment - UK Parliament|last=Hansard|first=|authorlink=|last2=|first2=|authorlink2=|date=Jan 25, 2019|website=hansard.parliament.uk|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>''

==Talks and interviews==
* May 21, 2018 - Interviewed on [[The ME Show]] by [[Gary Burgess]] about the [[UK Parliament Grand Committee Room debate 21st June 2018|Westminster Hall debate]] about the discredited [[PACE trial|Pace trial]].<ref>{{Cite web|url=https://www.buzzsprout.com/172265/705980-episode-three|title=The ME Show with Gary Burgess - Carol Monaghan|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=May 21, 2018|website=buzzsprout.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref> [https://www.buzzsprout.com/172265/705980-episode-three Episode link]

==Awards==
* Jul 6, 2018, [https://en.wikipedia.org/wiki/The_House_(magazine) The House Magazine][https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater 'Campaigner of the Week']<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater|title=Carol Monaghan - MP for Glasgow North West|last=|first=|date=July 6, 2018|website=www.facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29|publisher=The House (Print)|via=FaceBook - Carol Monaghan - MP for Glasgow North West}}</ref>

==Prime Minister's Questions (PMQs)==
On Wednesday 27 March 2019, Carol Monaghan MP asked the Prime Minister, Theresa May, about children with ME and the refusal of GET leading to child protection proceedings. The Prime Minster said she was not aware of the issue but would ask the responsible Minister to look into it <ref>{{Cite web|url=https://twitter.com/CMonaghanSNP/status/1110891152536932353|title=It is deeply disturbing that children who are extremely ill with #ME are being subjected to child protection proceedings. Watch my question to the PM on this issue.pic.twitter.com/h1aLXO02Na|last=MP 🏴󠁧󠁢󠁳󠁣󠁴󠁿|first=Carol Monaghan|date=2019-03-27|website=@CMonaghanSNP|language=en|access-date=2019-04-15}}</ref>.

==Media==
*Feb 20, 2018 - [https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/ Carol Monaghan: The PACE trial and its impact on people living with ME]<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/|title=The PACE trial and its impact on people living with ME {{!}} Second parliament debate on the PACE trial|last=Parliament Live TV|first=Parliament Live TV|authorlink=|last2=|first2=|authorlink2=|date=Feb 20, 2018|website=facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25|others=Carol Monaghan}}</ref>
*Mar 28, 2018 - Trial By Error: [http://www.virology.ws/2018/03/28/trial-by-error-a-q-and-a-with-scottish-mp-carol-monaghan/ A Q-and-A with Scottish MP Carol Monaghan]
*Jun 18, 2018 - The House Parliament's Magazine [https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change 'Carol Monaghan: We must change perceptions of the debilitating illness ME']<ref>{{Cite news|url=https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change|title=Carol Monaghan: We must change perceptions of the debilitating illness ME|last=|date=2018-06-18|work=PoliticsHome.com|access-date=2018-10-29|language=en|first=|archive-url=|archive-date=|dead-url=|publisher=The House}}</ref>
*Jan 21, 2019 - Trial By Error: [http://www.virology.ws/2019/01/21/trial-by-error-carol-monaghan-scores-another-parliamentary-debate/ Carol Monaghan Scores Another Parliamentary Debate]

==Online presence==
* [https://twitter.com/CMonaghanSNP Twitter]
* [https://www.facebook.com/CarolMonaghanSNP Facebook]
* [http://www.carol.monaghan.scot Website]

==See also==
* [[Intimidation of PACE critics]]

* [[Myalgic encephalomyelitis]]
* [[National Health Service|NHS]]
* [[PACE trial]]
* [[UK Parliament Commons Chamber debate 24th January 2019]]

==Learn more==
*[https://www.snp.org/your-team/carol-monaghan/ Scottish National Party - Carol Monaghan MP]
*[https://en.wikipedia.org/wiki/Carol_Monaghan Wikipedia - Carol Monaghan MP]

==References==
<references />

[[Category:Advocates or allies]]
[[Category:United Kingdom politicians]]
[[Category:Politicians]]
[[Category:United Kingdom Members of Parliament]]
[[Category:UK SNP politicians]]
[[Category:British advocates or allies]]
[[Category:Science and Technology Committee members - UK Parliament]]

Carol Monaghan

2019-04-15T12:01:50Z

Canary:add publication title

[[File:Carol Monaghan.jpg|thumb|right|200px]]
'''Carol Monaghan''' MP is a [[Scottish National Party]] member of the [[UK]] Parliament, representing Glasgow West.<ref>{{Cite web|url=https://www.snp.org/your-team/carol-monaghan/|title=Carol Monaghan|last=Scottish National Party|first=|authorlink=Scottish National Party|last2=|first2=|authorlink2=|date=2018-09-04|website=Scottish National Party|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>
{{Quote_frame|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.2|Carol Monaghan MP|''PACE Trial: People with ME'', House of Commons Hansard Debate, Feb 20, 2018}}

==Committees==
Carol Monaghan was appointed to the [[:Category:UK Parliament Science and Technology Committee|UK Parliament Science and Technology Committee]] in 2017.<ref name="2017sciencetech">{{Cite web|url=https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/membership/|title=Membership - Science and Technology Committee|website=UK Parliament|language=English|access-date=2019-01-28}}</ref>

==Parliamentary debates and business==
<embedvideo service="youtube" description="Carol Monaghan MP - Children with ME. Appropriate ME Treatment debate, Jan 24th 2019." dimensions="400" alignment="right" container="frame">https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0</embedvideo>Carol Monaghan MP has led three UK Parliamentary debates in Westminster.

* Feb 20, 2018, [[PACE_trial#Second_Parliamentary_debate_on_PACE_Trial| ''PACE trial and its effect on people with ME'']] [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME (Transcript)]<ref>{{Cite web|url=https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME|title=PACE Trial: People with ME - Hansard|last=|first=|date=Feb 20, 2018|website=hansard.parliament.uk|series=Volume 636|publisher=UK Parliament Hansard|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29}}</ref>

* Jun 21, 2018, [[UK_Parliament_Grand_Committee_Room_debate_21st_June_2018|''M.E. Treatment and Research'', UK Parliament Grand Committee Room debate]]

* Oct 30, 2018, [https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00 ''Backbench Business Committee'' - Extract (Video)]<ref>{{Cite web|url=https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00|title=Backbench Business Committee - EXTRACT|last=Monaghan|first=Carol|last2=Morgan|first2=Nicky|date=Oct 30, 2018|website=parliamentlive.tv|archive-url=|archive-date=|dead-url=|access-date=2018-10-30|last3=Hopkins|first3=Kelvin|last4=Pound|first4=Steve|authorlink=Carol Monaghan|authorlink2=Nicky Morgan|authorlink4=Stephen Pound|authorlink3=Kelvin Hopkins}}</ref>

* Jan 24, 2019, ''[[UK Parliament Commons Chamber debate 24th January 2019|Appropriate M.E. treatment motion and Backbench debate]]<ref>{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment|title=Appropriate ME Treatment - UK Parliament|last=Hansard|first=|authorlink=|last2=|first2=|authorlink2=|date=Jan 25, 2019|website=hansard.parliament.uk|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>''

==Talks and interviews==
* May 21, 2018 - Interviewed on [[The ME Show]] by [[Gary Burgess]] about the [[UK Parliament Grand Committee Room debate 21st June 2018|Westminster Hall debate]] about the discredited [[PACE trial|Pace trial]].<ref>{{Cite web|url=https://www.buzzsprout.com/172265/705980-episode-three|title=The ME Show with Gary Burgess - Carol Monaghan|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=May 21, 2018|website=buzzsprout.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref> [https://www.buzzsprout.com/172265/705980-episode-three Episode link]

==Awards==
* Jul 6, 2018, [https://en.wikipedia.org/wiki/The_House_(magazine) The House Magazine][https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater 'Campaigner of the Week']<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater|title=Carol Monaghan - MP for Glasgow North West|last=|first=|date=July 6, 2018|website=www.facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29|publisher=The House (Print)|via=FaceBook - Carol Monaghan - MP for Glasgow North West}}</ref>

==Prime Minister's Questions (PMQs)==
On Wednesday 27 March 2019, Carol Monaghan MP asked the Prime Minister, Theresa May, about children with ME and the refusal of GET leading to child protection proceedings. The Prime Minster said she was not aware of the issue but would ask the responsible Minister to look into it <ref>{{Cite web|url=https://twitter.com/CMonaghanSNP/status/1110891152536932353|title=It is deeply disturbing that children who are extremely ill with #ME are being subjected to child protection proceedings. Watch my question to the PM on this issue.pic.twitter.com/h1aLXO02Na|last=MP 🏴󠁧󠁢󠁳󠁣󠁴󠁿|first=Carol Monaghan|date=2019-03-27|website=@CMonaghanSNP|language=en|access-date=2019-04-15}}</ref>.

==Media==
*Feb 20, 2018 - [https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/ Carol Monaghan: The PACE trial and its impact on people living with ME]<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/|title=The PACE trial and its impact on people living with ME {{!}} Second parliament debate on the PACE trial|last=Parliament Live TV|first=Parliament Live TV|authorlink=|last2=|first2=|authorlink2=|date=Feb 20, 2018|website=facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25|others=Carol Monaghan}}</ref>
*Mar 28, 2018 - Trial By Error: [http://www.virology.ws/2018/03/28/trial-by-error-a-q-and-a-with-scottish-mp-carol-monaghan/ A Q-and-A with Scottish MP Carol Monaghan]
*Jun 18, 2018 - The House Parliament's Magazine [https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change 'Carol Monaghan: We must change perceptions of the debilitating illness ME']<ref>{{Cite news|url=https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change|title=Carol Monaghan: We must change perceptions of the debilitating illness ME|last=|date=2018-06-18|work=PoliticsHome.com|access-date=2018-10-29|language=en|first=|archive-url=|archive-date=|dead-url=|publisher=The House}}</ref>
*Jan 21, 2019 - Trial By Error: [http://www.virology.ws/2019/01/21/trial-by-error-carol-monaghan-scores-another-parliamentary-debate/ Carol Monaghan Scores Another Parliamentary Debate]

==Online presence==
* [https://twitter.com/CMonaghanSNP Twitter]
* [https://www.facebook.com/CarolMonaghanSNP Facebook]
* [http://www.carol.monaghan.scot Website]

==See also==
* [[Intimidation of PACE critics]]

* [[Myalgic encephalomyelitis]]
* [[National Health Service|NHS]]
* [[PACE trial]]
* [[UK Parliament Commons Chamber debate 24th January 2019]]

==Learn more==
*[https://www.snp.org/your-team/carol-monaghan/ Scottish National Party - Carol Monaghan MP]
*[https://en.wikipedia.org/wiki/Carol_Monaghan Wikipedia - Carol Monaghan MP]

==References==
<references />

[[Category:Advocates or allies]]
[[Category:United Kingdom politicians]]
[[Category:Politicians]]
[[Category:United Kingdom Members of Parliament]]
[[Category:UK SNP politicians]]
[[Category:British advocates or allies]]
[[Category:Science and Technology Committee members - UK Parliament]]

Carol Monaghan

2019-04-15T11:57:38Z

Canary:edit undo and use title

[[File:Carol Monaghan.jpg|thumb|right|200px]]
'''Carol Monaghan''' MP is a [[Scottish National Party]] member of the [[UK]] Parliament, representing Glasgow West.<ref>{{Cite web|url=https://www.snp.org/your-team/carol-monaghan/|title=Carol Monaghan|last=Scottish National Party|first=|authorlink=Scottish National Party|last2=|first2=|authorlink2=|date=2018-09-04|website=Scottish National Party|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>
{{Quote_frame|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.2|Carol Monaghan MP|''PACE Trial: People with ME'', House of Commons Hansard Debate, Feb 20, 2018}}

==Committees==
Carol Monaghan was appointed to the [[:Category:UK Parliament Science and Technology Committee|UK Parliament Science and Technology Committee]] in 2017.<ref name="2017sciencetech">{{Cite web|url=https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/membership/|title=Membership - Science and Technology Committee|website=UK Parliament|language=English|access-date=2019-01-28}}</ref>

==Parliamentary debates and business==
<embedvideo service="youtube" description="Carol Monaghan MP - Children with ME. Appropriate ME Treatment debate, Jan 24th 2019." dimensions="400" alignment="right" container="frame">https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0</embedvideo>Carol Monaghan MP has led three UK Parliamentary debates in Westminster.

* Feb 20, 2018, [[PACE_trial#Second_Parliamentary_debate_on_PACE_Trial| ''PACE trial and its effect on people with ME'']] [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME (Transcript)]<ref>{{Cite web|url=https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME|title=PACE Trial: People with ME - Hansard|last=|first=|date=Feb 20, 2018|website=hansard.parliament.uk|series=Volume 636|publisher=UK Parliament Hansard|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29}}</ref>

* Jun 21, 2018, [[UK_Parliament_Grand_Committee_Room_debate_21st_June_2018|''M.E. Treatment and Research'', UK Parliament Grand Committee Room debate]]

* Oct 30, 2018, [https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00 ''Backbench Business Committee'' - Extract (Video)]<ref>{{Cite web|url=https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00|title=Backbench Business Committee - EXTRACT|last=Monaghan|first=Carol|last2=Morgan|first2=Nicky|date=Oct 30, 2018|website=parliamentlive.tv|archive-url=|archive-date=|dead-url=|access-date=2018-10-30|last3=Hopkins|first3=Kelvin|last4=Pound|first4=Steve|authorlink=Carol Monaghan|authorlink2=Nicky Morgan|authorlink4=Stephen Pound|authorlink3=Kelvin Hopkins}}</ref>

* Jan 24, 2019, ''[[UK Parliament Commons Chamber debate 24th January 2019|Appropriate M.E. treatment motion and Backbench debate]]<ref>{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment|title=Appropriate ME Treatment - UK Parliament|last=Hansard|first=|authorlink=|last2=|first2=|authorlink2=|date=Jan 25, 2019|website=hansard.parliament.uk|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>''

==Talks and interviews==
* May 21, 2018 - Interviewed on [[The ME Show]] by [[Gary Burgess]] about the [[UK Parliament Grand Committee Room debate 21st June 2018|Westminster Hall debate]] about the discredited [[PACE trial|Pace trial]].<ref>{{Cite web|url=https://www.buzzsprout.com/172265/705980-episode-three|title=The ME Show with Gary Burgess - Carol Monaghan|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=May 21, 2018|website=buzzsprout.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref> [https://www.buzzsprout.com/172265/705980-episode-three Episode link]

==Awards==
* Jul 6, 2018, [https://en.wikipedia.org/wiki/The_House_(magazine) The House Magazine][https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater 'Campaigner of the Week']<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater|title=Carol Monaghan - MP for Glasgow North West|last=|first=|date=July 6, 2018|website=www.facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29|publisher=The House (Print)|via=FaceBook - Carol Monaghan - MP for Glasgow North West}}</ref>

==Prime Minister's Questions (PMQs)==
On Wednesday 27 March 2019, Carol Monaghan MP asked the Prime Minister, Theresa May, about children with ME and the refusal of GET leading to child protection proceedings. The Prime Minster said she was not aware of the issue but would ask the responsible Minister to look into it <ref>{{Cite web|url=https://twitter.com/CMonaghanSNP/status/1110891152536932353|title=It is deeply disturbing that children who are extremely ill with #ME are being subjected to child protection proceedings. Watch my question to the PM on this issue.pic.twitter.com/h1aLXO02Na|last=MP 🏴󠁧󠁢󠁳󠁣󠁴󠁿|first=Carol Monaghan|date=2019-03-27|website=@CMonaghanSNP|language=en|access-date=2019-04-15}}</ref>.

==Media==
*Feb 20, 2018 - [https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/ Carol Monaghan: The PACE trial and its impact on people living with ME]<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/|title=The PACE trial and its impact on people living with ME {{!}} Second parliament debate on the PACE trial|last=Parliament Live TV|first=Parliament Live TV|authorlink=|last2=|first2=|authorlink2=|date=Feb 20, 2018|website=facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25|others=Carol Monaghan}}</ref>
*Mar 28, 2018 - [http://www.virology.ws/2018/03/28/trial-by-error-a-q-and-a-with-scottish-mp-carol-monaghan/ Trial By Error: A Q-and-A with Scottish MP Carol Monaghan]
*Jun 18, 2018 - [https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change 'Carol Monaghan: We must change perceptions of the debilitating illness ME']<ref>{{Cite news|url=https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change|title=Carol Monaghan: We must change perceptions of the debilitating illness ME|last=|date=2018-06-18|work=PoliticsHome.com|access-date=2018-10-29|language=en|first=|archive-url=|archive-date=|dead-url=|publisher=The House}}</ref>
*Jan 21, 2019 - [http://www.virology.ws/2019/01/21/trial-by-error-carol-monaghan-scores-another-parliamentary-debate/ Trial By Error: Carol Monaghan Scores Another Parliamentary Debate]

==Online presence==
* [https://twitter.com/CMonaghanSNP Twitter]
* [https://www.facebook.com/CarolMonaghanSNP Facebook]
* [http://www.carol.monaghan.scot Website]

==See also==
* [[Intimidation of PACE critics]]

* [[Myalgic encephalomyelitis]]
* [[National Health Service|NHS]]
* [[PACE trial]]
* [[UK Parliament Commons Chamber debate 24th January 2019]]

==Learn more==
*[https://www.snp.org/your-team/carol-monaghan/ Scottish National Party - Carol Monaghan MP]
*[https://en.wikipedia.org/wiki/Carol_Monaghan Wikipedia - Carol Monaghan MP]

==References==
<references />

[[Category:Advocates or allies]]
[[Category:United Kingdom politicians]]
[[Category:Politicians]]
[[Category:United Kingdom Members of Parliament]]
[[Category:UK SNP politicians]]
[[Category:British advocates or allies]]
[[Category:Science and Technology Committee members - UK Parliament]]

Carol Monaghan

2019-04-15T11:10:21Z

Canary:add PMQs

[[File:Carol Monaghan.jpg|thumb|right|200px]]
'''Carol Monaghan''' MP is a [[Scottish National Party]] member of the [[UK]] Parliament, representing Glasgow West.<ref>{{Cite web|url=https://www.snp.org/your-team/carol-monaghan/|title=Carol Monaghan|last=Scottish National Party|first=|authorlink=Scottish National Party|last2=|first2=|authorlink2=|date=2018-09-04|website=Scottish National Party|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>
{{Quote_frame|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.2|Carol Monaghan MP|''PACE Trial: People with ME'', House of Commons Hansard Debate, Feb 20, 2018}}

==Committees==
Carol Monaghan was appointed to the [[:Category:UK Parliament Science and Technology Committee|UK Parliament Science and Technology Committee]] in 2017.<ref name="2017sciencetech">{{Cite web|url=https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/membership/|title=Membership - Science and Technology Committee|website=UK Parliament|language=English|access-date=2019-01-28}}</ref>

==Parliamentary debates and business==
<embedvideo service="youtube" description="Carol Monaghan MP - Children with ME. Appropriate ME Treatment debate, Jan 24th 2019." dimensions="400" alignment="right" container="frame">https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0</embedvideo>Carol Monaghan MP has led three UK Parliamentary debates in Westminster.

* Feb 20, 2018, [[PACE_trial#Second_Parliamentary_debate_on_PACE_Trial| ''PACE trial and its effect on people with ME'']] [https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME (Transcript)]<ref>{{Cite web|url=https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME|title=PACE Trial: People with ME - Hansard|last=|first=|date=Feb 20, 2018|website=hansard.parliament.uk|series=Volume 636|publisher=UK Parliament Hansard|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29}}</ref>

* Jun 21, 2018, [[UK_Parliament_Grand_Committee_Room_debate_21st_June_2018|''M.E. Treatment and Research'', UK Parliament Grand Committee Room debate]]

* Oct 30, 2018, [https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00 ''Backbench Business Committee'' - Extract (Video)]<ref>{{Cite web|url=https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00|title=Backbench Business Committee - EXTRACT|last=Monaghan|first=Carol|last2=Morgan|first2=Nicky|date=Oct 30, 2018|website=parliamentlive.tv|archive-url=|archive-date=|dead-url=|access-date=2018-10-30|last3=Hopkins|first3=Kelvin|last4=Pound|first4=Steve|authorlink=Carol Monaghan|authorlink2=Nicky Morgan|authorlink4=Stephen Pound|authorlink3=Kelvin Hopkins}}</ref>

* Jan 24, 2019, ''[[UK Parliament Commons Chamber debate 24th January 2019|Appropriate M.E. treatment motion and Backbench debate]]<ref>{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment|title=Appropriate ME Treatment - UK Parliament|last=Hansard|first=|authorlink=|last2=|first2=|authorlink2=|date=Jan 25, 2019|website=hansard.parliament.uk|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>''

==Talks and interviews==
* May 21, 2018 - Interviewed on [[The ME Show]] by [[Gary Burgess]] about the [[UK Parliament Grand Committee Room debate 21st June 2018|Westminster Hall debate]] about the discredited [[PACE trial|Pace trial]].<ref>{{Cite web|url=https://www.buzzsprout.com/172265/705980-episode-three|title=The ME Show with Gary Burgess - Carol Monaghan|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=May 21, 2018|website=buzzsprout.com|archive-url=|archive-date=|dead-url=|access-date=}}</ref> [https://www.buzzsprout.com/172265/705980-episode-three Episode link]

==Awards==
* Jul 6, 2018, [https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater Campaigner of the Week]<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/photos/a.603087106485156.1073741828.602811439846056/1548871901906667/?type=3&theater|title=Carol Monaghan - MP for Glasgow North West|last=|first=|date=July 6, 2018|website=www.facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-29|publisher=The House (Print)|via=FaceBook - Carol Monaghan - MP for Glasgow North West}}</ref>

==Prime Minister's Questions (PMQs)==
On Wednesday 27 March 2019, Carol Monaghan MP asked the Prime Minister, Theresa May, about children with ME and the refusal of GET leading to child protection proceedings. The Prime Minster said she was not aware of the issue but would ask the responsible Minister to look into it <ref>{{Cite web|url=https://twitter.com/CMonaghanSNP/status/1110891152536932353|title=It is deeply disturbing that children who are extremely ill with #ME are being subjected to child protection proceedings. Watch my question to the PM on this issue.pic.twitter.com/h1aLXO02Na|last=MP 🏴󠁧󠁢󠁳󠁣󠁴󠁿|first=Carol Monaghan|date=2019-03-27|website=@CMonaghanSNP|language=en|access-date=2019-04-15}}</ref>.

==Media==
*Feb 20, 2018 - [https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/ Carol Monaghan: The PACE trial and its impact on people living with ME]<ref>{{Cite web|url=https://www.facebook.com/CarolMonaghanSNP/videos/1409555942504931/|title=The PACE trial and its impact on people living with ME {{!}} Second parliament debate on the PACE trial|last=Parliament Live TV|first=Parliament Live TV|authorlink=|last2=|first2=|authorlink2=|date=Feb 20, 2018|website=facebook.com|language=en|archive-url=|archive-date=|dead-url=|access-date=2019-01-25|others=Carol Monaghan}}</ref>
*Mar 28, 2018 - [http://www.virology.ws/2018/03/28/trial-by-error-a-q-and-a-with-scottish-mp-carol-monaghan/ Trial By Error: A Q-and-A with Scottish MP Carol Monaghan]
*Jun 18, 2018 - [https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change 'Carol Monaghan: We must change perceptions of the debilitating illness ME']<ref>{{Cite news|url=https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change|title=Carol Monaghan: We must change perceptions of the debilitating illness ME|last=|date=2018-06-18|work=PoliticsHome.com|access-date=2018-10-29|language=en|first=|archive-url=|archive-date=|dead-url=|publisher=The House}}</ref>
*Jan 21, 2019 - [http://www.virology.ws/2019/01/21/trial-by-error-carol-monaghan-scores-another-parliamentary-debate/ Trial By Error: Carol Monaghan Scores Another Parliamentary Debate]

==Online presence==
* [https://twitter.com/CMonaghanSNP Twitter]
* [https://www.facebook.com/CarolMonaghanSNP Facebook]
* [http://www.carol.monaghan.scot Website]

==See also==
* [[Intimidation of PACE critics]]

* [[Myalgic encephalomyelitis]]
* [[National Health Service|NHS]]
* [[PACE trial]]
* [[UK Parliament Commons Chamber debate 24th January 2019]]

==Learn more==
*[https://www.snp.org/your-team/carol-monaghan/ Scottish National Party - Carol Monaghan MP]
*[https://en.wikipedia.org/wiki/Carol_Monaghan Wikipedia - Carol Monaghan MP]

==References==
<references />

[[Category:Advocates or allies]]
[[Category:United Kingdom politicians]]
[[Category:Politicians]]
[[Category:United Kingdom Members of Parliament]]
[[Category:UK SNP politicians]]
[[Category:British advocates or allies]]
[[Category:Science and Technology Committee members - UK Parliament]]

PACE trial

2019-04-09T13:45:38Z

Canary:statement from MRC

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=Nice Guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the Trial by Error Series on the PACE trial are listed below.

*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 the 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?' and has questioned the reasons why actigraphy was dropped late in the trial <ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>.

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 [[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" />

Dr [[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" />. Dr Lee has also wrote 'Research Waste In ME/CFS' which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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. The Medical Research Council (MRC) and its Chief Executive continued to defend the trial and in a statement dated 28 August 2018 said that as funders of the PACE trial we reject the view that the scientific evidence provided by the trial was unsound <ref>{{Cite web|url=https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/|title=Criticism of the PACE trial|last=Medical Research Council|first=M. R. C.|date=2018-08-28|website=mrc.ukri.org|language=en|access-date=2019-04-09}}</ref>.

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, concluding that they found "no good reason" to change the conclusions of the PACE trial, and restating that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone."<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [http://irvinginstitute.columbia.edu/pdf/How_Not_to_Conduct_in_Randomized_Clinical_Trial_Levin.pdf How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center (Slides)
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==References==

<references>
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| title = Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
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| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
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| date = February 2016
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| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
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| 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
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[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial

2019-04-09T13:39:04Z

Canary:letter to Times from Fiona Watt

[[File:Pace trial.png|right|300px]]'''The PACE Trial''' (short for "'''P'''acing, graded '''A'''ctivity, and '''C'''ognitive behaviour therapy; a randomised '''E'''valuation")<ref name=":0">{{Cite journal|last=White|first=Peter D.|author-link=Peter White|last2=Sharpe|first2=Michael C.|author-link2=Michael Sharpe|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|last4=DeCesare|first4=Julia C.|last5=Walwyn|first5=Rebecca|last6=PACE trial group|author-link6=PACE Trial Management Group|date=2007-03-08|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|url=https://www.ncbi.nlm.nih.gov/pubmed/17397525|journal=BMC neurology|volume=7|pages=6|doi=10.1186/1471-2377-7-6|issn=1471-2377|pmc=2147058|pmid=17397525|via=}}</ref> 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=":0" /> 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 and Social Care (UK)]] for England, [[Scottish Chief Scientist Office]], and - apparently uniquely for a clinical trial - the [[Department for Work and Pensions]] - the government department for sickness, disability and pension benefits. The PACE trial 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 [[Deconditioning|deconditioned]], and that if they gradually increased their activity, there was nothing to prevent their recovery.<ref name="PACEmanualPCBT" /><ref name="PACEmanualPGET" /> The [[Cognitive behavioral therapy|cognitive behavioural therapy]] (CBT) group focused on addressing their presumed [[Illness beliefs|fear of activity]] while the [[graded exercise therapy]] (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" />

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website.

All documents pertaining to the PACE trial can be found following the link ''PACE trial documents''.
{{Main article |page_name = PACE trial documents}}

==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 [[Myalgic encephalomyelitis|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 [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|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" /> The influential [[Cochrane]] review relied heavily on the PACE trial.<ref>{{Cite journal|last=Larun|first=Lillebeth|last2=Odgaard-Jensen|first2=Jan|last3=Brurberg|first3=Kjetil G|last4=Chalder|first4=Trudie|last5=Dybwad|first5=Marianne|last6=Moss-Morris|first6=Rona E|last7=Sharpe|first7=Michael|last8=Wallman|first8=Karen|last9=Wearden|first9=Alison|date=2014-04-01|title=Exercise therapy for chronic fatigue syndrome (individual patient data)|url=http://dx.doi.org/10.1002/14651858.cd011040|journal=Cochrane Database of Systematic Reviews|doi=10.1002/14651858.cd011040|issn=1465-1858}}</ref>

In the UK, the NICE guidelines for [[National Health Service|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".<ref name="NICEguideCG53static" /> After considerable objections, this decision was reversed and the [[NICE guidelines]] clinical review began in 2017.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/Surveillance-decision|title=Surveillance decision {{!}} Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance and guidelines|last=National Institute for Clinical Excellence|first=|authorlink=Nice Guidelines|date=|website=www.nice.org.uk|language=en-GB|archive-url=|archive-date=|dead-url=|access-date=2018-10-19}}</ref>

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 were 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|thumb|right|414px|PACE recovery thresholds - author confusion. Image: Senseaboutscienceusa.org]]

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 [[PACE 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|thumb|right|300px|PACE recovery thresholds - much lower than for healthy people of similar age. Image: Senseaboutscienceusa.org]]<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==

Numerous ME sufferers and other interested parties have produced critiques of the PACE trial including 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-Item Health Survey|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 [https://www.s4me.info/evaluatingpace/homepageanim.html '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 [https://www.s4me.info/evaluatingpace/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]

=== ME Analysis videos (2018) ===

[[Graham McPhee]] has created a set of three videos looking again at the PACE trial.

* [https://youtu.be/RqpHc_Y7awQ "The PACE study claimed that CBT and graded exercise helped (or even cured) people with ME. This easy video explains its main faults."]

Others including Jessica Kellgren-Fozard, a vlogger and TV producer with a large social media following, created a video in May 2018 called 'Have you been misled...? // What is PACE? // Medical Scandal' which had been viewed over 35,000 times <ref>https://www.youtube.com/watch?v=7NKsbjU89Zk </ref>.

==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 criticizing different aspects of the trial.<ref name="viroblogMECFS" /> The main articles for the Trial by Error Series on the PACE trial are listed below.

*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 the 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?' and has questioned the reasons why actigraphy was dropped late in the trial <ref name="BaileyL201710" /> <ref>https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/</ref>.

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 [[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" />

Dr [[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" />. Dr Lee has also wrote 'Research Waste In ME/CFS' which compared psychosocial trials using the PACE trial in the study as more likely to engage in selective reporting than biomedical trials which means that they are a waste of money and time and "it confirms the concerns raised by ME/CFS groups that psychosocial interventions are harmful, and present questionable therapeutic benefits no different to a placebo" <ref>https://meaustralia.net/2018/06/28/research-waste-in-me-and-cfs-trials/</ref> <ref>https://www.biorxiv.org/content/early/2017/05/07/133926 </ref>.

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 [[Sarah_Myhill#maimes |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" />

In April 2018 Dr Neil McGregor analysed the harms in the PACE trial and stated that "The conclusions within the PACE studies is consistent with a highly biased study which under-estimates, and does not assess, the adverse outcomes in relationship to the disease process. The use of therapies of this type cannot be recommended based upon the data within the PACE study and must exclude the worst affected patients as they were not included in the study assessments." <ref>https://www.melbournebioanalytics.org/first-news-item/</ref>.

===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).

No response from the Lancet was received - see continued campaigning in 2018 section below.

===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 in relation to these matters being charged by the police/law enforcement or convicted in the Courts 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 QMUL 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" /> Professor Peter White responded to the article with a letter to the WSJ published 24th of March, 2016, claiming that "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."<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==

The PACE trial was scientifically discredited but the impact of it on the medical community has continued especially in the UK.

===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>

===Centers 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.

===Continued campaigning===

[[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>.

ME sufferers have continued to campaign against the PACE trial including in [[Millions Missing]] protests around the world in 2018 over the PACE trial and the adverse effects on biomedical research. As part of this a 'Song for ME: Blowin in the Wind' (available on [https://www.youtube.com/watch?v=BncUDXRA1v4 YouTube]) was recorded by ME patients from 7 countries around the world which included the lyrics "How many times must an idea fail...Before it is seen to be flawed?...And how many flaws can a trial embrace...Before it is seen as a fraud?...Yes and how many wounds must its victims expose...
Before they’re no longer ignored?" <ref>https://www.meaction.net/2018/04/24/a-song-for-me-blowin-in-the-wind/</ref>

Dr Racaniello sent another open letter with nearly 100 signatories including scientists, clinicians, academics, lawyers and other experts to the editor Richard Horton at the Lancet due to receiving no response two years later to the original letter from February 2016,. The letter again asked for an independent re-analysis from independent reviewers outside UK psychiatry who have no conflicts of interests involving the PACE investigators and the funders of the trial <ref>http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/</ref>. Another letter of appeal was sent with signatories including 65 ME patient organisation / charities and also this time with 10 Members of Parliament signing the open letter to Richard Horton and the Lancet <ref>http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ </ref>. The Times (UK) reported on the third letter in its article 'Call for review of ‘flawed’ ME research in Lancet letter' and stated at the end, "The Lancet declined to comment" <ref>https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh</ref>. The BMJ who were supportive of the PACE trial previously reported it as 'Pressure grows on Lancet to review “flawed” PACE trial' and also approached the Lancet for comment <ref>https://www.bmj.com/content/362/bmj.k3621.short?rss=1 </ref>. In a letter to the editor of The Times, the Chief Executive of the MRC, Fiona Watt continued to defend the PACE trial <ref>{{Cite web|url=https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/|title=The Times: Call for review of ‘flawed’ ME research in Lancet letter {{!}} 21 August 2018|language=en-US|access-date=2019-04-09}}</ref> <ref>{{Cite news|url=https://www.thetimes.co.uk/article/preparing-children-for-starting-primary-school-6q6hv8nl3|title=Preparing children for starting primary school|date=2018-08-27|access-date=2019-04-09|language=en|issn=0140-0460}}</ref>.

=== Additional Scientific Publications===

'''BMC Psychology - Re-analysis by Wilshire et al'''

BMC Psychology published on 22 March 2018 [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 '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]] <ref>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> . 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. One of the early critics and author, [[Robert Courtney]], died shortly before the paper was published. The reanalysis is published on PubMed. <ref>{{Cite journal|last=Wilshire|first=Carolyn E.|author-link=Carolyn Wilshire|last2=Kindlon|first2=Tom|author-link2=Tom Kindlon|last3=Courtney|first3=Robert|author-link3=Robert Courtney|last4=Matthees|first4=Alem|author-link4=Alem Matthees|last5=Tuller|first5=David|author-link5=David Tuller|last6=Geraghty|first6=Keith|author-link6=Keith Geraghty|last7=Levin|first7=Bruce|author-link7=Bruce Levin|date=Mar 22, 2018|title=Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pubmed/29562932|journal=BMC psychology|volume=6|issue=1|pages=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref>

Once again the [[Science Media Centre]] on the eve of the publication organised media briefings for journalists and news organisations. The Science Media Centre produced on this occasion three separate briefings in an attempt to reduce the impact of the publication and spin the story. It produced a 'Factsheet: CFS/ME – The illness and the controversy', 'Before the headlines analysis – Reanalysis of the PACE trial' , and an 'expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments' <ref>http://www.sciencemediacentre.org/wp-content/uploads/2018/03/Science-Media-Centre-Factsheet-CFS-ME-Final-Version.pdf</ref> <ref>http://www.sciencemediacentre.org/reanalysis-of-the-pace-trial/</ref> <ref>expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments </ref>.

One of the patient authors asked other patients to contact journalists to ensure they cover the publication and to ensure they have the full facts <ref>https://www.s4me.info/threads/science-media-centre-cfs-me-factsheet-for-journalists-the-illness-and-the-controversy.3104/</ref>. Despite the pressure and Science Media Centre briefings to undermine the publication the media did report on it. The Times reported it as [https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr 'Findings of £5m ME chronic fatigue study ‘worthless’]. Even the government news organisation, the BBC, reported on it with [https://www.bbc.co.uk/news/health-43490335 'Chronic fatigue trial results 'not robust', new study says']. The Daily Mail and Huffington Post and other UK national and local media reported on the story <ref>http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html </ref> <ref>https://www.huffingtonpost.co.uk/2018/03/22/findings-of-chronic-fatigue-study-not-reliable_n_19401888.html</ref> <ref>http://www.thisismoney.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html</ref> <ref>http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/</ref>. The news was reported in Europe by Health Europa <ref>https://www.healtheuropa.eu/controversy-me-pace-trial/85888/</ref>. The Canary did in-depth coverage of the reanalysis paper <ref>https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ </ref>. The NEJM JWatch publicised this to physicians <ref>https://www.jwatch.org/na46472/2018/04/06/chronic-fatigue-treatment-redux-questioning-efficacy-cbt </ref>. The European Health Journal also republished the paper <ref>https://www.europeanhealthjournal.com/2018/04/26/rethinking-the-treatment-of-chronic-fatigue-syndrome-a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt/ </ref>.

In 2019, PACE trial authors [[Michael Sharpe]], [[Kimberley Goldsmith]] and [[Trudie Chalder]] responded to the re-analysis by Wilshire et al, concluding that they found "no good reason" to change the conclusions of the PACE trial, and restating that "both CBT and GET, when given appropriately as supplements to specialist medical care, are more effective at improving both fatigue and physical functioning in people with CFS, than are APT or SMC alone."<ref>{{Cite journal|last=Sharpe|first=Michael|author-link=Michael Sharpe|last2=Goldsmith|first2=Kim|author-link2=Kimberley Goldsmith|last3=Chalder|first3=Trudie|author-link3=Trudie Chalder|author-link4=|author-link5=|date=Mar 12, 2019|title=The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al|url=https://doi.org/10.1186/s40359-019-0288-x|journal=BMC Psychology|volume=7|issue=1|pages=15|doi=10.1186/s40359-019-0288-x|issn=2050-7283|quote=|via=}}</ref>

'''Other journals'''

Also in March, the British Journal of Healthcare Management (a peer reviewed journal for management in the healthcare sector) published by George Winters, 'Chronic fatigue syndrome: the ongoing medical debate' which was a summary of the controversy over the decades and the scandal over the last two years <ref>https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112 </ref>.

In July 2018 Scientists from Workwell Foundation, University of the Pacific, California published an editorial in the British Journal of Sports Medicine 'Checking our blind spots: current status of research evidence summaries in ME/CFS' and concluded "the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians." It also supported citizen scientists in its conclusion "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries....By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP." <ref>https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553</ref>.

'''Textbooks'''

After years of trying to gain traction in scientific journals, shortly after the scandal being exposed in the journals and media, academic textbooks in psychology also began documenting the flaws of the PACE trial.

In March 2018 'Health Psychology: Theory, Research and Practice' by Dr David Marks et al documented the numerous flaws in the PACE trial in a section called 'The PACE trial: A Catalogue of Errors' (pages 603-605) <ref>https://www.amazon.co.uk/Health-Psychology-Theory-Research-Practice/dp/1526408244/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=QGYXJNF0PF8EA2M764JA </ref>.

In August 2018 a book called 'Psychology in Crisis' by Prof Brian Michael Hughes also documented and summarised the failures of the PACE trial <ref>https://www.amazon.co.uk/Psychology-Crisis-Brian-Hughes/dp/1352003007</ref>.

===Complaint to medical regulator (GMC)===

Dr Sarah Myhill has complained to the UK's medical regulator, the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], over the conduct of the PACE trial authors <ref>http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors</ref>. Over 200 letters of complaints by ME patients were also sent to the General Medical Council. A petition gathered over 8900 signatories supporting Dr Myhill's complaint to the GMC about the PACE trial authors <ref>https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors</ </ref>.

===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 Commissioner's Office. On 20 February 2018 the Information Commissioner's Office ruled that the the university should release the [[PACE Trial Steering Committee]] minutes and the [[PACE Trial Management Group|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 favors publishing the anonymized 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>.

An Early Day Motion (EDM) 1247 was launched by Carol Monaghan MP in May for ME Awareness week which stated amongst other points "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018....acknowledges the detrimental effect of the PACE trial and its results, and the work which is being done to reverse this;" <ref>https://www.parliament.uk/edm/2017-19/1247</ref>. It was supported by 136 MPs and was in the top 1% (No 7/1503 as at July 2018) of all EDM's in the parliamentary session.

A further debate on 'M.E. Treatment and Research' was led by Carol Monaghan MP on 21 June 2018 and the PACE trial was again criticised by many MP's <ref>http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018#The_PACE_trial </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]]

<blockquote>"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></blockquote>

<blockquote>"Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the Biopsychosocial Model".<ref>https://twitter.com/newhealthpsych/status/891931633980506113 </ref></blockquote>

==Principal investigators and researchers==

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

The [[PACE 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, [https://www.youtube.com/watch?v=U0_8eVl99zs Michael Sharpe interview]
*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" />
*June 2017: [https://www.youtube.com/watch?v=6zWnVB_2lUU&frags=pl%2Cwn #TearItUp PACE trial] Invest in ME Pre-Conference dinner talk by Dr David Tuller
*September 2018: [http://irvinginstitute.columbia.edu/pdf/How_Not_to_Conduct_in_Randomized_Clinical_Trial_Levin.pdf How Not To Conduct A Randomized Clinical Trial] by Dr [[Bruce Levin]], Ph.D., Department of Biostatistics, Mailman School of Public Health, Columbia University Irving Medical Center (Slides)
*October 2018: [https://www.facebook.com/Hope4MEFibro/videos/vb.1003993319659488/549092118889078/?type=2&theater 'The PACE Trial: ‘One of Greatest Medical Scandals of the 21st Century'] talk by Dr David Tuller and Professor Brian Hughes, Newry, Northern Ireland

==See also==

*[https://me-pedia.org/wiki/PACE_trial_documents PACE trial documents]
*[[Intimidation and bullying of PACE trial critics]]
*[[Action for ME]]
*[[Cochrane]]
*[[Cognitive behavioral therapy]]
*[[Graded exercise therapy]]
*[[FINE trial]]
*[[Journal of Health Psychology, Special Issue: The PACE Trial]]
*[[NICE guidelines]]
*[[PACE trial documents]]
*[[PACE Trial Management Group]]
*[[PACE Trial Steering Committee]]
*[[:Category:PACE trial critics|PACE trial critics]]
*[[:Category:Psychological paradigm proponents|Proponents of the psychological theory of ME/CFS]]
*[[:Category:Psychological paradigm critics|Psychological paradigm critics]]
*[[The Lancet]]
*[[The Lancet Psychiatry]]

==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]

==References==

<references>
<ref name="pace2003trialregistry">{{citation
| last1 = White | first1 = PD | authorlink1 = Peter White
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}}</ref>
<ref name="PACEmanualSSMC">{{citation
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| 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
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| date = 31 Mar 2006
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<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
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| 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
| 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 = The PACE Trial Management Group | authorlink20 = PACE Trial Management Group
| 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
| 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)
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[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]