MEpedia - User contributions [en]

Millions missing 2018 - Sheffield photos

2018-05-25T10:54:24Z

Blue Agent:adding a picture

[[File:Shoes at mm sheffield 1.jpeg]]

[[File:Millions missing fargate.jpg]]

[[File:Mm m and s.jpg]]

File:Mm m and s.jpg

2018-05-25T10:53:43Z

Blue Agent:Another picture of protest

Another picture of protest

User:Blue Agent

2018-05-23T16:21:23Z

Blue Agent:nothing much

Huge berserk rebel warthog. Will do children's parties.

Millions Missing protests

2018-05-23T16:17:28Z

Blue Agent:/* May 2018 Protests */ stuff n that

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly in part due to the critical success of the [http://me-pedia.org/wiki/Unrest Unrest] documentary. Amongst the demands made by protesters were a significant increase in funding into the illness by the US National Institute of Health (NIH).<ref>https://www.meaction.net/2018/04/30/why-were-targeting-the-nih-for-millionsmissing/</ref>

==Photos from 2018==

===Europe===
*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

MEpedia:Suggested tasks

2018-05-23T11:39:35Z

Blue Agent:moved a completed thing PW letter

This page lists suggestions for improvements or additions to MEpedia.

PLEASE if at all possible, create/edit a relevant article yourself (see [[How to contribute]]), as the editors of MEpedia are all sick and working hard to improve the content in particular areas - we need your help! But if you REALLY can't make the improvement yourself, click '''Edit''' below (next to the heading "Suggestions"), add your suggestion to the end, and then click '''Save page'''.

Please keep your suggestion as brief as possible (usually one line) and be sure to include web links to sources/citations (e.g., the published study, a source for a quote, etc.).

If you merely wish to keep track of your own goals on site (but for discoverability by others), you can instead add a subpage to your user page (add a "/" and subpage, e.g., [[User:Brettz9/To-dos]]) and then add the code <nowiki>[[Category:User to-dos]]</nowiki> to your subpage article. It will then show up at [[:Category:User to-dos]].

==Priority pages for expansion==
'''Science:''' [[Citric acid cycle]], [[Mitochondria]], [[Exercise]], [[Natural killer cell]], [[Central nervous system]], [[Nitric oxide hypothesis]], [[Brain]], [[Brain imaging]], [[Microbiome hypothesis]], [[Primer_for_journalists#Prognosis|Primer for journalists (''Prognosis'' section)]], [[PACE trial]]

=Suggestions - High Priority=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add photos of ALL the May (and Belfast in June) Millions Missing protests to the MM page http://me-pedia.org/wiki/Millions_Missing_protests
*Create a page for Lyrica/Pregabalin and add this talk by Alan Light https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s
*Make sure this study on relative quality of life is documented and cited, especially the chart http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
*Merge the two history pages together: http://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome and http://me-pedia.org/wiki/Important_events_timeline
*Add the Stats.org editorial & 7,000 word criticism to the PACE page :
**Make sure that all the specific significant criticisms they make are covered in the Criticism section if not already
**(''IN PROGRESS'') Include (and explain) this chart from article https://twitter.com/Katiissick/status/713080268756619264
*Categorize all uncategorized pages (list of uncategorized pages here: http://me-pedia.org/wiki/Special:UncategorizedPages)
* Add a [[Wikipedia:Portal:Contents/Portals|portal]] on Wikipedia for CFS or umbrella (e.g., auto-immune-related conditions), bringing more awareness and contributions on Wikipedia (also through subpages, such as "B cells and CFS"), and which we could reference here

=Suggestions - Five Minute Tasks=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add https://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html
*Add http://www.healthrising.org/blog/2016/04/06/immune-system-fatigue-brain-me-cfs-fibromyalia/
*Make sure MEpedia covers the GETSET study https://spoonseeker.com/2016/05/23/a-few-notes-on-getset/
*Add https://twitter.com/Firestormmer/status/734650703847784449
*Add http://www.freezepage.com/1374761286EFCHIYENBE
*Add http://www.healthrising.org/blog/2016/05/19/25-disease-chronic-fatigue-syndrome-mecfs-unique-many-people-homebound/
*Add http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/
*Find source and add https://twitter.com/Firestormmer/status/733001836186238976
*Add to ketogenic diet page under exogenous ketones https://ketosource.co.uk/exogenous-ketone-supplements-review/
*Add http://www.meassociation.org.uk/2016/05/remember-shine-the-spotlight-on-mecfs-research-and-management-dr-shepherd-recalls-highlights-of-burgess-hill-meeting-14-may-2016/
*Add http://medicalxpress.com/news/2016-05-chronic-fatigue-patients-suppress-emotions.html
*Add to ritux/b-cell pages http://forums.phoenixrising.me/index.php?threads/extended-b-cell-phenotype-in-patients-with-me-cfs-a-cross-sectional-study.41743/#post-674305
*Add http://www.meassociation.org.uk/2016/05/me-associations-contributions-towards-mitochondrial-muscle-research-in-mecfs-17-may-2016/
*Add new page for MEGA UK study https://www.actionforme.org.uk/news/mega-new-me-research-project/#.Vzn9sbBp4gk.twitter
*Add http://www.meaction.net/2016/05/15/brain-connectivity-problems-causing-signalling-problems/
*Add details of new Crawley study to her page, and mention AfME funding it, also mention that on AfME page http://forums.phoenixrising.me/index.php?threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/#post-724857
*Add to MAGENTA page http://apps.who.int/trialsearch/Trial2.aspx?TrialID=ISRCTN23962803
*Add http://www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/
*Add https://cfsremission.wordpress.com/2016/05/14/cortisol-cfs-and-microbiome/
*Add http://www.meassociation.org.uk/2016/05/ive-suffered-with-me-since-i-was-eight-and-the-way-im-treated-hasnt-changed-in-30-years-the-independent-12-may-2016/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27165859
*Add http://phoenixrising.me/archives/28077
*Add http://www.meaction.net/2016/05/11/fluge-and-mellas-search-for-genetic-markers/
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add to Ritux page https://twitter.com/Firestormmer/status/730399214686056448
*Add https://selfhacked.com/2016/05/11/21-proven-science-based-reasons-magnesium-amazing-including-drawbacks/
*Add http://scienmag.com/further-clues-in-the-fight-against-chronic-fatigue-syndrome/
*Add http://www.eurekalert.org/pub_releases/2016-05/bawh-etg050616.php
*Add https://www.ncbi.nlm.nih.gov/pubmed/9771781
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add http://www.healthrising.org/blog/2016/05/09/activated-mast-cell-activation-syndrome-mecfsfm/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9745235
*Add http://healthy-magazines.com/chronic-fatigue-syndrome-mecfs-uncovering-mystery/
*Add https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0873-1
*Add http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
*Add http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
*Add https://selfhacked.com/2016/05/03/mmp9/
*Add http://forums.phoenixrising.me/index.php?threads/norwegian-professor-in-biology-supportive-of-pace.44177/page-5#post-721234
*Add to NIH page http://www.occupycfs.com/2016/05/03/staying-the-course-to-where/
*Add http://www.huffingtonpost.com/-stephanie-land/patients-with-chronic-ill_b_9818754.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/9292244
*Add https://tipsforme.wordpress.com/2015/10/19/resource-walking-problems/?utm_content=bufferb75ff&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
*Add https://www.researchgate.net/publication/11813965_What_is_Chronic_Fatigue_Syndrome_Heterogeneity_Within_an_International_Multicentre_Study
*Add http://www.meaction.net/2016/05/01/patients-and-professor-publish-biomedical-mecfs-paper/
*Add https://www.ncbi.nlm.nih.gov/pubmed/15784798
*Add http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
*Add https://corsius.wordpress.com/2016/04/23/biased-research-on-cfs/
*Add http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/
*Add http://www.healthrising.org/forums/threads/can-simple-blood-tests-help-to-identify-chronic-fatigue-syndrome-me-cfs.4228/
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.long
*Add http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/full
*Add https://www.ncbi.nlm.nih.gov/pubmed/9018051
*Add http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
*Add http://www.meaction.net/2016/04/27/nih-study-will-bring-new-technology-and-expertise-to-mecfs/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27114901
*Add quote to IOM report page and patient mental health pages https://twitter.com/ollie72/status/724948447024009217?cn=cmV0d2VldA%3D%3D&refsrc=email
*Add https://www.ncbi.nlm.nih.gov/pubmed/27116645
*Add https://meagenda.wordpress.com/2009/10/27/dr-nigel-speight-resigns-from-children-and-young-persons-organisation-ayme/
*Add to MS/Ritux pages http://www.gene.com/media/press-releases/14609/2015-10-08/genentechs-ocrelizumab-first-investigati
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0859-z
*Add http://www.mdpi.com/2075-4418/6/2/16
*Add https://www.ncbi.nlm.nih.gov/pubmed/27095328
*Add http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486360/?page=8
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf
*Add http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-016-1497-z
*Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1
*Make sure this article is linked to on the ME page, maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
*Add this study on cytokines to the cytokines page (and pages for the specific ones affected) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/pdf/cdli00002-0112.pdf
*Add this 1994 article to the Chronic Fatigue Syndrome page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615008/pdf/amjph00453-0124.pdf
*Add this article to the e-coli page https://cfsremission.wordpress.com/2016/03/29/the-care-and-feeding-of-e-coli-probiotics/
*Add this article to the autoimmunity page http://cellfatigue.blogspot.co.uk/2016/03/autoimmunity-and-self-tolerance-in-mecfs.html
*Make sure this study is mentioned on the ketogenic diet page https://www.ncbi.nlm.nih.gov/pubmed/24847102
*Create a basic outline page about this UK ME support group http://www.mesupport.co.uk/index.php?page=anniversary-statement You can copy-paste an outline from the outlines page http://me-pedia.org/wiki/MEpedia_article_outlines#Patient_Group.2FCharity
*Add new simple protocol article to Ken Lassesen's hypothesis page (probiotics) https://cfsremission.wordpress.com/2016/03/31/best-two-probiotics-to-start-probiotic-approach/ and also add this https://cfsremission.wordpress.com/2016/03/27/pictures-of-cfs/
*Add this interesting anecdote to the MS page http://www.cortjohnson.org/forums/threads/a-chronic-fatigue-syndrome-pots-patient-responds-to-a-multiple-sclerosis-drug-what-does-it-mean.4028/
*Make sure this video about Klimas' gene study is included on her page, and wherever the study is covered (perhaps its own page needed?) https://sharkmedia.nova.edu/media/ME+CFS+Genes+Study/1_06vh90p0
*Add 2006 announcement of fatigue service at Barts UK led by Peter White to White's page, and Shirley Conran page and Maurice Murphy pages. https://web.archive.org/web/20070522194545/http://www.bartsandthelondon.nhs.uk/formedia/press/release.asp?id=1216
*Add ME Advocacy article to NIH study page under Learn more http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study
*Add Cort article to PACE page, Learn more section http://www.cortjohnson.org/forums/threads/pace-trial-gets-most-devastating-critique-yet.4003/#post-15641
*Add to MRI pages https://www.ncbi.nlm.nih.gov/pubmed/8141020
*Add Guardian article to list of articles about ME http://www.theguardian.com/lifeandstyle/2016/apr/04/chronic-fatigue-syndrome-cfs-taken-seriously#comment-71789644 Maybe also to PACE page, and pages for Montoya, Hornig & Dimmock.
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1282370
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1446478
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1337562
*Add NK study https://www.ncbi.nlm.nih.gov/pubmed/1287238
*Add this article to Cort Johnson page http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=28684
*Add http://carersfight.blogspot.co.uk/2015/12/the-pace-trial-concerns-raised-by.html
*Add https://m.facebook.com/photo.php?fbid=955820941179099&id=100002536068526&set=a.274636879297512.61710.100002536068526&source=57
*Add https://twitter.com/senseaboutsci/status/683616829923831808?s=09
*Add https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment
*Add http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/
*Add http://www.meassociation.org.uk/2015/12/plenty-of-new-blood-and-enthusiasm-at-the-uk-mecfs-biobank-23-december-2015/
*Add https://pubpeer.com/publications/22870204
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4224?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16831
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4116?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16842
*Add http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
*Add http://www.mrijournal.com/article/S0730-725X(15)00303-3/abstract
*Add https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
*Add https://twitter.com/LetsDoIt4ME/status/678983105865195520/photo/1
*Add https://twitter.com/bengoldacre/status/679228319234195456
*Add http://forums.phoenixrising.me/index.php?threads/peter-white-barts-comments-on-draft-nice-guidelines-insight-into-their-views.1239/
*Add http://www.investinme.org/InfoCentre-vaccines-popup-1.htm
*Add http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
*Add https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf
*Add http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full
*Add http://www.cortjohnson.org/forums/threads/severely-ill-chronic-fatigue-syndrome-me-cfs-study-expanded.3432/
*Add https://twitter.com/postersandme/status/677469604348870657/photo/1
*Add http://www.qmul.ac.uk/media/news/items/smd/81841.html
*Add https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome
*Add https://twitter.com/TomKindlon/status/677173627532402688
*Add http://www.investinme.org/Article-419%20Professor%20Hooper%20Response%20to%20The%20Observer%20Newspaper%20Aug2011.htmhttp://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
*Add to Walitt and NIH study pages http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/
*Article to add to Fibromyalgia, Younger and LDN pages http://nationalpainreport.com/fibromyalgia-can-we-crack-the-code-and-put-the-patient-first-8829846.html
*Add this article to Brian Walitt page http://www.cortjohnson.org/forums/threads/brian-walitt-and-the-psychosomaticism-of-fibromyalgia-another-look.3915/
*Make sure this Lightning Process study is on the LP page https://www.ncbi.nlm.nih.gov/pubmed/26983138?dopt=Abstract
*Add a link to this discussion between Elizabeth Dowsett & P. D. Welsby to her page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/pdf/postmedj00061-0066.pdf
*Add this article (and the study referred to) to Leonard Jason's page (maybe others?) http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
*Make sure the Ramsay-style criteria created my Shepherd, Goudsmit & Howes is linked to on its own page, and those of the authors http://www.axfordsabode.org.uk/me/mecrit2014.htm
*Pick a page about a person (patient, doctor, researcher, journalist etc) and add a photo to their page.

*Add to NIH page http://www.healthrising.org/blog/2016/05/26/proposal-vastly-increase-funding-mecfs-nih-passes-first-test/
*Make sure this crucial chart of ME quality of life and related study are included and study referenced http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

*Add to NAC page https://selfhacked.com/2016/05/27/top-25-science-based-health-benefits-n-acetyl-cysteine-nac/
*Add to mitochondria and Eric Gordon pages http://www.gordonmedical.com/unravelling-complex-chronic-illness/gordon-medical-research-center-now-funding-replication-study-on-cfidsme-findings/
*Add to fatigue page http://www.healthrising.org/blog/2016/05/31/fatigue-japanese-way/
*Make sure we have a page on the GETSET trial http://forums.phoenixrising.me/index.php?threads/getset-graded-exercise-therapy-guided-self-help-treatment-getset.44749/
*Make sure the ME Association page link to purple book gets to the latest one http://www.meassociation.org.uk/2016/06/the-eight-edition-of-our-clinical-and-research-masterwork-is-published-today-1-june-2016/
*Add to NK cell and b cell pages and key author pages http://forums.phoenixrising.me/index.php?threads/novel-identification-and-characterisation-of-transient-receptor-potential-melastatin-3-ion-channels.44932/
*Add to Davis page and severely ill study page http://www.meaction.net/2016/06/04/davis-at-invest-in-me-new-severe-patients-data/
*Add to page on Fisetin https://selfhacked.com/2016/06/04/15-science-based-health-benefits-fisetin-1-favorite/
*Add to Davis and mitochondria and severely ill study pages http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/
*Add to Weardon page, maybe others http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8
*Add to Davis page and list of news articles https://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
*Add to microbiome page and Simon Carding page https://www.ncbi.nlm.nih.gov/pubmed/27275835
*Add to cognitive dynsfunction page http://www.healthrising.org/blog/2016/06/12/cognition-chronic-fatigue-syndrome-key-findings/
*Add White study http://www.jpsychores.com/article/S0022-3999(16)30327-0/abstract
*Add to vision page http://www.meresearch.org.uk/news/vision-thesis/
*Add to NIH page http://www.occupycfs.com/2016/06/14/responding-to-the-nih-rfi/
*Add to chronic fatigue page, maybe also primer(s)? http://www.self.com/wellness/2016/06/the-difference-between-chronic-fatigue-syndrome-and-extreme-tiredness/
*Add to OMF and/or severely ill study page http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/
*Add to mtDNA page http://www.nytimes.com/2016/06/24/science/mitochondrial-dna-mothers.html
*This appears to be Kew UK Gov archive, add to relevant page for easy access https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

=Suggestions=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add Margaret Williams article about PACE criticism http://www.investinme.org/IIME-Newslet-1603-01.htm
*Add this UK TV segment about a patient https://www.youtube.com/watch?v=I8lsRlUhRps&feature=youtu.be Where? Possibly a new page listing TV segments, or a page for each segment, linking to all those featured?
*Pick a member of the OMF advisory board, and make sure we have a page for them giving a summary of who they are. http://me-pedia.org/wiki/Open_Medicine_Foundation
*Read Osler's Web and document key events/people/documents it refers to, linking to the book for readers to learn more.(please note the page# where she discusses the change in fingerprints, add here http://me-pedia.org/wiki/Fingerprint_change)
*Read Mary Dimmock's "Thirty Years of Disdain" and ensure MEpedia covers the key events/people/resources referred to, with citations.
*Read this summary of ME/CFS research, add details to all relevant pages http://paradigmchange.me/me-abnormalities/

==Implement acronyms as a category==
http://me-pedia.org/wiki/List_of_acronyms
:I don't think this is necessary? The current abbreviations page serves its function perfectly, as it is alphabetized, linked and has explanatory notes. A category seems like an unnecessary duplication. --[[User:Samsara|Samsara]] ([[User talk:Samsara|talk]]) 02:18, 3 November 2016 (PDT)

==Historical articles==
Add these articles:

*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1584694/pdf/canmedaj00332-0046.pdf
*http://jama.jamanetwork.com/article.aspx?articleid=311962
*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277260/
*https://books.google.com/books?id=Yoi11TCZSE8C&pg=PA21&lpg=PA21&dq=Lewis+effort+syndrome+mottle&source=bl&ots=FX5vL0oafQ&sig=oGydqO_vAY5zS6A9JEGPxR6vpBI&hl=en&sa=X&ei=rG46VbzsKcWHsQSTlYCgDg&ved=0CC4Q6AEwAg#v=onepage&q=Lewis%20effort%20syndrome%20mottle&f=false
*https://books.google.com/books?id=jtcCAAAAYAAJ&pg=PA76&lpg=PA76&dq=cardiac+phase+of+the+war+neuroses&source=bl&ots=-EvPo4rQJg&sig=wbuUYp39tiPaA4sLRiTHNsAJwWM&hl=en&sa=X&ei=yLY6VbHAMuKIsQSQ84CgAg&ved=0CCoQ6AEwBA#v=onepage&q=cardiac%20phase%20of%20the%20war%20neuroses&f=false
*https://books.google.com/books?id=1AVHAQAAMAAJ&pg=PA1919&lpg=PA1919&dq=irritable+heart+of+soldiers+dacosta+1871&source=bl&ots=yeXur4uyW0&sig=8boB-L18PKPSpqVJAyk2LO9pC9w&hl=en&sa=X&ei=0oE6VZCQL-SwsAT584HQDQ&ved=0CEoQ6AEwCA#v=onepage&q=irritable%20heart%20of%20soldiers%20dacosta%201871&f=false

There are also a very large number of resources here that need to be added: http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

==Stem cell treatments==

Info such as at http://www.bbc.com/news/health-35065905 and http://www.prohealth.com/library/showarticle.cfm?libid=14735 would be interesting to have. [[User:Brettz9|Brettz9]] ([[User talk:Brettz9|talk]]) 11:37, 19 January 2016 (PST)

==Treatments==

A great rundown of infections related to ME/CFS and potential treatments. Link can be added to "Further reading" on the [[List of treatments]] page. Information here can also be included on the appropriate pages for specific infectious agents and specific antivirals. https://sites.google.com/site/cfstestingandtreatmentroadmap/ --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 09:24, 11 December 2015 (PST)

==Basic biochemistry==

* Cross reference with CFS research to all [[Vitamin]] and [[Mineral]] pages Also [[choline]] and [[essential fatty acid]] --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 11:47, 10 December 2015 (PST)

==Infectious disease==

New study shows that EBV can infect neurons. Apparently we didn't know this before! http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/ Consider updating the [[Herpesvirus]] page with any relevant information. I think it would be really great to expand the EBV (and really all the herpesvirus pages) with information on the association of these viruses with both [[CFS]] and other diseases, especially those involving [[B cell]]s and the possible infection of nervous tissue. --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 08:38, 16 March 2016 (PDT)

=Completed=
'''When a task is complete move it HERE'''

*Add https://www.ncbi.nlm.nih.gov/pubmed/27088131
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/
*Source this chart and add to MEpedia https://twitter.com/mjdesignart/status/732061326420250626
*Add https://www.ncbi.nlm.nih.gov/pubmed/15157711
*Add http://www.meaction.net/2016/05/17/uk-mecfs-biobank-opens-for-business/
*Make sure this study and a copy of the Guardian article are in MEpedia https://twitter.com/JaneCColby/status/734460704607080448 [Note: no digital record of 1997 Guardian article; original journal article cited in Guardian and pdf included under authors and journal pages]
* Create a page for "Cell danger response", link to Wikipedia, link to our mitochondria page (both ways) and add this https://www.ncbi.nlm.nih.gov/pubmed/23981537 [Note: there is no Wikipedia page for cell danger response]
*Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
*Add https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/8809350
*Add recent White paper on attitudes to treatment http://www.ncbi.nlm.nih.gov/pubmed/27521650
*Fix VanElzakker quote references: http://twitter.com/MBVanElzakker/status/770364493415219200 and http://twitter.com/MBVanElzakker/status/772885740669767680 and http://twitter.com/MBVanElzakker/status/765686260195332096 [Note: These quotes were opted not to be included because better quotes were found.] -- [[User:Kmdenmark|Kmdenmark]]
*Add https://www.ncbi.nlm.nih.gov/pubmed/27118537
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189612
*Add to ME/CFS page, and also consider adding to one or more primers http://www.openmedicinefoundation.org/what-is-mecfs/
*Add to author pages, and a topic page for drugs https://www.ncbi.nlm.nih.gov/pubmed/27229907
*Add http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/ (broken link)
*Add http://www.meaction.net/2016/05/19/dr-hornigs-talk-in-sweden-now-available/
*Add http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome
*Add https://www.ncbi.nlm.nih.gov/pubmed/27177188
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189122
*Add https://www.ncbi.nlm.nih.gov/pubmed/24510231
*Add http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/
*Add Bateman talk slides http://www.fcclinic.com/SLEEP%20research%20CDC%20talk%20090914%20final.pdf
*Add to LDN page http://scienmag.com/revamped-ldn-site-launched-biggest-patient-initiated-drug-discovery-program-in-history/
*Add https://www.ncbi.nlm.nih.gov/pubmed/10545311
*Add to page on cell danger response https://www.ncbi.nlm.nih.gov/pubmed/23981537
*Add http://m.chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract (link broken)
*Ensure all the studies from this excellent document are in the relevant pages (topics, authors) in MEpedia https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view
*Add Tuller/Racaniello pieces to Tuller & PACE pages http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
*Add the infamous house of lords discussion from 2013 to PACE and countess of mar pages https://youtu.be/Fo5hdL7zXxQ?t=1 and the transcript http://www.meassociation.org.uk/2013/02/house-of-lords-debates-the-pace-trial-verbatim-report-and-youtube-6-february-2013/
*Add http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/
*Add article by QMUL student http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/
*Add blog post data release http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html
*Add Rehmeyer Statnews piece https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
*Add news coverage of data release http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial and http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you and http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 http://www.meaction.net/2016/09/09/qmul-releases-pace-data/ https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=twitter-share-scienceofus http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9
*Add http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf
*Add http://dspace.nwu.ac.za/handle/10394/17668
*Add to Maryann Spurgin page http://www.meadvocacy.org/circulatory_impairment
*Add this new Marshall-Gradisnik study to all relevant pages https://www.ncbi.nlm.nih.gov/pubmed/27001659
*Add http://link.springer.com/article/10.1007%2Fs11306-015-0816-5
*Add to CMRC page http://www.meresearch.org.uk/news/cmrc-agm-2016-conference-news/
*Add https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf
*Add Nath talk https://www.youtube.com/watch?v=g8z-v1F6Ax0
*Add this 2011 Klimas talk to her page https://www.youtube.com/watch?v=UMimz3iDk0s
*Add to the quotations page the quote from Nancy Klimas where she said she'd choose HIV over ME/CFS
*Add to Unumatz page http://www.eurekalert.org/pub_releases/2016-06/jl-nft060716.php
*Add https://www.youtube.com/watch?v=wsUhaGEKXBg
*Add http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
*Add to [[Enterovirus]] http://www.ncbi.nlm.nih.gov/pubmed/2161907
*Add to Neil McGregor page https://meaustralia.net/2016/08/08/meet-the-scientists-dr-neil-mcgregor/
*Add https://twitter.com/TomKindlon/status/680141293863829505?s=09
*Add the Morris/Maes papers to both their pages and relevant topic pages, a list is here http://forums.phoenixrising.me/index.php?threads/can-you-help-working-on-mitochondria-page.45729/page-2#post-744173
*Add to Q Fever page https://cfsremission.wordpress.com/2016/05/28/post-infection-fatigue/
*Add to NIH page http://forums.phoenixrising.me/index.php?threads/transcript-of-dr-vicky-whittemores-me-cfs-proposal-to-the-nih-council-26-may-2016.44845/
*Add http://www.huffingtonpost.com/maureen-hanson/be-aware-and-beware-chron_b_10057510.html
*Add to IiME conference page http://www.healthrising.org/blog/2016/06/09/bacteria-brainstem-rituximab-progress-invest-me-chronic-fatigue-syndrome/
*Add to IiME conference page http://phoenixrising.me/archives/28153
*Add this article on three "biomarkers" for the disease to relevant pages http://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/
*Add these THREE segments of interview with Alan Light https://www.youtube.com/watch?v=ZZyXUL7CPks&feature=youtu.be
*Add book http://www.meaction.net/2016/06/16/new-mecfs-book-lighting-up-a-hidden-world/
*Add Lucibee article on PACE and Chalder fatigue scale (she was a sub-editor at Lancet). Also find her previous article on PACE and add that. Also add to Chalder page, and possibly also a new page on the Chalder Fatigue Scale itself to explain it. https://lucibee.wordpress.com/2016/04/02/fatigued-by-scales-as-outcome-measures/ Here's a link to the Chalder Fatigue Scale http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf Also study https://www.ncbi.nlm.nih.gov/pubmed/8463991
*Add to Chalder Fatigue Scale page http://evaluatingpace.phoenixrising.me/aps3chalder.html
*Add disease symptom scale, and somehow group all symptom scales (lerner, bell, chalder, de paul, etc) https://twitter.com/TomKindlon/status/721423210919669760?s=09
*Add https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/ added to [[Spain]], [[Epidemiology]], [[Suicide]]
*Add this study to the GET page https://www.ncbi.nlm.nih.gov/pubmed/26995250
*Add new blog post about Karina Hansen to her page http://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
*Add article to Lyme page http://www.perthnow.com.au/news/western-australia/lyme-disease-a-ticking-timebomb-that-health-authorities-say-does-not-exist/story-fnhocxo3-1226886911487
*Add to melatonin page https://www.ncbi.nlm.nih.gov/pubmed/27226183
*Pick a country page and make sure there is a flag image on it (use one that's about 200 pixels wide to avoid the need for a thumbnail image, which is currently broken).
*Add https://www.ncbi.nlm.nih.gov/pubmed/9861623
*Add this interview with Susan Levine to her page https://www.youtube.com/watch?v=Akc5upzbFxs&feature=youtu.be
*Add a photo of Ampligen to the page
*copy Tuller articles from PACE Trial to Tuller page (already done by someone)
*Make sure the Glenn Beck page links back to this post https://www.facebook.com/GlennBeck/posts/10153736242213188
*Add FINE consent form http://retractionwatch.com/wp-content/uploads/2016/05/11.4.16-Mitchell-Response-consent-form-version3-MREC-2460904.pdf
*Add to FINE page https://forbetterscience.wordpress.com/2016/05/20/plos-correction-removes-previously-available-anonymised-patient-clinical-trial-data/
*Add to IBS page https://jcoynester.wordpress.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/
*Add to MTHFR page https://selfhacked.com/2016/05/18/need-know-mthfr-genespolymorphisms-c677t-rs1801133/
*Add to Rikva Solomon page https://www.statnews.com/2016/05/24/chronic-fatigue-syndrome-myalgic-encephalomyelitis/
*Add to Tom Kindlon page https://www.pinterest.com/tomkindlon/
*Add this article about preliminary findings from Davis work to pages for Davis, Mitochondria, End ME/CFS Project, and Naviaux pages http://www.cortjohnson.org/forums/threads/end-me-cfs-severe-patient-study-turns-to-the-mitochondria.3949/page-2
*Add this article to Learn More section of NIH study page http://www.medpagetoday.com/Neurology/GeneralNeurology/56772
*Add this interview with Jennifer Brea to her page in "Talks & interviews" section https://secure-ec.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d06cd8f33d6cd5b120e&c_id=11198959
*Make sure the Fukuda/CDC criteria page includes a link to the actual criteria definition: http://www.cfids-me.org/cdcdefine.html
*Make sure Alan Light's gene expression chart that so strikingly shows the effects of exercise on patients is included in MEpedia.(Pace Trial)
*Add educational video on central nervous system https://www.youtube.com/watch?v=q8NtmDrb_qo (Nervous System)
*Add educational video on autonomic nervous system https://www.youtube.com/watch?v=71pCilo8k4M (and POTS & OI pages?)
*Add educational video on parasympathetic nervous system https://www.youtube.com/watch?v=qqU-VjqjczE (Nervous System)
*Add educational video on sympathetic nervous system https://www.youtube.com/watch?v=0IDgBlCHVsA (Nervous System)
*Look over the original study and add new information to [[Epstein-Barr virus]] page http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/
*Add https://batemanhornecenter.org/link-between-gut-microbiome-and-pem/
*Add this article on PEM to the PEM page http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/
*Add this study to PEM page, Zinn pages, Jason page, maybe others https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Add this study to page on cognitive symptoms https://www.ncbi.nlm.nih.gov/pubmed/27032787
*Replace this page with a category and ensure all sub-pages are categorised into a useful structure http://me-pedia.org/wiki/Research_initiatives_Europe
*Replace this page with a category http://me-pedia.org/wiki/Clinical_doctors_worldwide categorise all pages within it
*Replace this page with a category http://me-pedia.org/wiki/Patient_Groups_Worldwide
*Add article to Shirley Conran page http://www.dailymail.co.uk/femail/article-3511666/The-one-lesson-ve-learned-life-Author-Shirley-Conran-surviving-ME.html
*Make sure this recent update by IiME on their Rituximab research is included on the Rituximab page under Learn more http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm
*Add photos (pre-illness and post) to Whitney Dafoe's page http://me-pedia.org/wiki/Whitney_Dafoe
*Add Ampligen http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/UCM334430.pdf
*Add vitamin B study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
*Add this Lassesen article to the LDS page under Learn More https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/
*Add latest video (with Q&A) to PACE page and Tuller page. On the video Tuller states he was involved in Act Up, please add that fact to his page. https://www.youtube.com/watch?v=1fS6Gzc52VI
*Added the appropriate Linus Pauling Institute page to all vitamins and minerals pages
*Add this Mary Schweitzer post to the NIH study page http://slightlyalive.blogspot.co.uk/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html
*Add https://www.youtube.com/watch?v=bCUvygbYdXs
*Add https://www.ncbi.nlm.nih.gov/pubmed/10209352
*Make sure this study is linked to from the natural killer cell page https://www.dovepress.com/articles.php?article_id=26236
*Add this Norwegian TV segment about Rituximab (and private availability) to Rituximab page https://www.youtube.com/watch?v=MfqJWRhgVx0&feature=youtu.be
https://dl.dropboxusercontent.com/u/23608059/simon%20on%20eysenck.pdf
*Add this study on endothelial function by Julia Newton https://www.ncbi.nlm.nih.gov/pubmed/22078396
*Add https://www.ncbi.nlm.nih.gov/pubmed/10535608
*Add http://solvecfs.org/spring-chronicle/spring-chronicle-2016.pdf
*Add http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
*Add SPECT study https://www.ncbi.nlm.nih.gov/pubmed/1491843
*Add https://twitter.com/EUROMEALL
*Add https://www.ncbi.nlm.nih.gov/pubmed/9476743
*Add https://www.youtube.com/watch?v=87zAPTEtxas
*Add https://www.youtube.com/watch?v=wJB95m4FLa0&feature=youtu.be
*Add Ron Davis MM interview to his page https://www.youtube.com/watch?v=fiSPS85sTkw&feature=youtu.be
*Make sure the IACFS name change definition is included http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
*Add http://iacfsme.org/PDFS/2016MayNesletter/Attachment-08-Dr-Keith-Geraghty-Doing-CFS-research.aspx
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088059
*Make sure this study is linked to on the Carnitine page https://www.ncbi.nlm.nih.gov/pubmed/8148455
*Add http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
*Add http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/27091026
*Add https://www.ncbi.nlm.nih.gov/pubmed/9226729
*Add https://www.ncbi.nlm.nih.gov/pubmed/9170115
*Add quote on quotations, cause of death and Chu pages https://twitter.com/TomKindlon/status/728660598125408257?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/19228959
*Add http://www.healthrising.org/forums/threads/an-eye-on-the-mitochondria-man-robert-naviaux-and-chronic-fatigue-syndrome-me-cfs.4163/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9149090
*Add a picture of Rituximab to the Rituximab page
*Make sure the IOM report page includes a link to their brief summary: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
*Add to POTS page http://hic.sagepub.com/content/2/1/2324709614527812.full
*Add ritux update http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/
*Add https://batemanhornecenter.org/uncovering-biomarkers-fcg-receptors/
*Add https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322
*Add https://www.youtube.com/watch?v=li7zQgN-PxQ&feature=youtu.be
*Add https://www.youtube.com/watch?v=xMcZ-UTlRmU&feature=youtu.be
*Make sure this study is on author pages and maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Make sure this study is on NK cell page https://www.ncbi.nlm.nih.gov/pubmed/2824604
*Add to POTS page http://forums.phoenixrising.me/index.php?threads/is-postural-orthostatic-tachycardia-a-useful-diagnostic-marker-in-chronic-fatigue-syndrome-patients.44915/
*Make sure this study is linked to from the HHV6 page https://twitter.com/EricaVerrillo/status/715599637021859840?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/27187093
*Add to microbiome page https://cfsremission.wordpress.com/2016/06/25/83-accuracy-in-mecfs-diagnosis-with-microbiome-analysis/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27223465
*On the home page click on "Immune exhaustion hypothesis" to create the page, and add this article to it (and for extra points, the studies referenced, you may be able to copy & paste from eg the Hornig page) http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/
*Pick a member of the IOM report committee and ensure we have a page on who they are [[Institute_of_Medicine_report]] page
*Add this Q-fever article on persistence post-infection http://qjmed.oxfordjournals.org/content/95/12/832.long
*Make sure we have a page (however small/simple) on the Canadian Criteria, that links to the criteria document: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
*Immunosuppression from Rituximab may cause reactivation of a persistent enteroviral infection with potentially dangerous neurological complications http://www.sciencedirect.com/science/article/pii/S0042682210007683
*Make sure this article is on the list of articles about MECFS http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html
*Add Peter White letter to the Wall St Journal. http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440 (full text here http://forums.phoenixrising.me/index.php?threads/peter-white-writes-to-wall-street-journal.43750/)

[[Category:User to-dos]]
[[Category:MEpedia guidelines]]

PACE trial

2018-05-23T11:34:02Z

Blue Agent:/* ME Charities and others calls for data release */ stuff

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

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

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

 

==Background==

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

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

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

==Study design==

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

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

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

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

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website. The following have been uploaded here:
*[[Media:PACE-get-therapist-manual.pdf]]
*[[Media:PACE-get-participant-manual.pdf]]
*[[Media:PACE-cbt-therapist-manual.pdf]]
*[[Media:PACE-cbt-participant-manual.pdf]]
*[[Media:Apt-participant-manual.pdf]]
*[[Media:Apt-therapist-manual.pdf]]
*[[Media:Ssmc-doctor-manual.pdf]]

==Findings==

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

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

==Impact==

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

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

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

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

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

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

===Influence on treatment===

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

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

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

==Criticisms of the study==

===Selection of patients===

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

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

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

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

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

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

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

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

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

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

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

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

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

===Newsletter to participants===

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

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

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

===Risks and side effects===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

=== ME Charities criticism and complaints ===

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

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

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

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

==Controversy==

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

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

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

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

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

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

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

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

=== Further criticism from scientific community ===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

===Petitions and Protests===

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

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

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

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

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

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

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

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

=== Sense About Science USA ===

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

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

=== PACE Trial in UK Parliament ===

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

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

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

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

==Response to criticism==

===Response===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

==Calls to release data==

===Open data commitments===

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

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

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

===Freedom of Information requests===

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

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

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

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

===Data requests from scientists===

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

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

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

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

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

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

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

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

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

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

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

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

===PLOS Expression of Concern===

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

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

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

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

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

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

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

=== Additional Scientific Publications===

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

===Complaint to medical regulator===

===Further FOIA requests===

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

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

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

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

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

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

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

==Quotes from PACE trial critics==

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editor of the [[Journal of Health Psychology]]

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

==Principal investigators and researchers==

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

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

==List of PACE trial publications==

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

==References==

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

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

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

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

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

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

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

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

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



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

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

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

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

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

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

<ref name="paceWessely20110806">{{citation
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| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
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| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
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| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
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| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
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| last4 = Chalder | first4 = T | authorlink4 = Trudie Chalder
| 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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<ref name="various201308psymed">{{citation
| last1 = Murray | first1 = Robin | authorlink1 = Robin Murray
| last2 = Agardy | first2 = Susanna | authorlink2 = Susanna Agardy
| last3 = Carter | first3 = Samuel | authorlink3 = Samuel Carter
| last4 = Courtney | first4 = Robert | authorlink4 = Robert Courtney
| last5 = Cox | first5 = Duncan | authorlink5 = Duncan Cox
| last6 = Maryhew | first6 = Carly | authorlink6 = Carly Maryhew
| last7 = Shepherd | first7 = Charles | authorlink7 = Charles Shepherd
| last8 = White | first8 = Peter | authorlink8 = Peter White
| quote = Editor: we have published six of the letters which cover the main criticisms, and invited Professor White to reply to them
| title = (correspondence) Six letters concerning the paper by White et al (2013) on the PACE Trial
| journal = Psychological Medicine | volume = August 2013
| publisher = republished by ME Association UK
| date = 22 Jul 2013
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| url = http://www.bmj.com/content/347/bmj.f5963/rapid-responses
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| title = FOI Request: PACE Trial Recovery Rates and Positive Outcome Rates
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| url = https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
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| last1 = Sheridan | first1 = Anna | authorlink1 = Anna Sheridan
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| last1 = Matthees | first1 = Alem | authorlink1 = Alem Matthees
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| url = https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part
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| date = 1 Nov 2015
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| last1 = Kings College London
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| url = http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/
}}</ref>

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

</references>

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

PACE trial

2018-05-23T11:02:01Z

Blue Agent:/* ME Charities and others calls for data release */ adding reference to White's letter and link

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

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

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

 

==Background==

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

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

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

==Study design==

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

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

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

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

As at 7th May 2018, the PACE manuals are not retrievable from the QMUL website. The following have been uploaded here:
*[[Media:PACE-get-therapist-manual.pdf]]
*[[Media:PACE-get-participant-manual.pdf]]
*[[Media:PACE-cbt-therapist-manual.pdf]]
*[[Media:PACE-cbt-participant-manual.pdf]]
*[[Media:Apt-participant-manual.pdf]]
*[[Media:Apt-therapist-manual.pdf]]
*[[Media:Ssmc-doctor-manual.pdf]]

==Findings==

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

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

==Impact==

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

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

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

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

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

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

===Influence on treatment===

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

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

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

==Criticisms of the study==

===Selection of patients===

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

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

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

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

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

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

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

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

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

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

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

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

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

===Newsletter to participants===

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

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

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

===Risks and side effects===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

=== ME Charities criticism and complaints ===

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

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

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

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

==Controversy==

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

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

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

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

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

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

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

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

=== Further criticism from scientific community ===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

===Petitions and Protests===

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

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

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

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

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

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

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

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

=== Sense About Science USA ===

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

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

=== PACE Trial in UK Parliament ===

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

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

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

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

==Response to criticism==

===Response===

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

==Calls to release data==

===Open data commitments===

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

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

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

===Freedom of Information requests===

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

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

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

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

===Data requests from scientists===

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

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

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

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

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

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

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

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

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

This battle was reported in the Wall Street Journal by Amy Dockser Marcus on 7 March 2016 as [http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 Patients, Scientists Fight Over Research-Data Access], which featured quotes from [[David Tuller]], [[Tom Kindlon]], Anna Sheridan Wood, [[James Coyne]].<ref name="WSJ20160307"/><ref name="MEASSUK201603WSJ"/> Professor Peter White responded to the article with [http://www.meassociation.org.uk/2016/03/patients-scientists-fight-over-research-data-access-wall-street-journal-7-march-2016/ 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."

==Release of Data==

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

===Information Tribunal===

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

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

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

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

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

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

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

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

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

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

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

===Results of Reanalysis===

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

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

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

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

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

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

===Scientific and Media response===

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

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

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

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

'''Blogs'''

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

'''Media Response by PACE authors'''

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

'''Scientific Journals'''

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

===Learn more===

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

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

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

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

===PLOS Expression of Concern===

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

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

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

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

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

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

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

=== Additional Scientific Publications===

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

===Complaint to medical regulator===

===Further FOIA requests===

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

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

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

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

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

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

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

==Quotes from PACE trial critics==

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editor of the [[Journal of Health Psychology]]

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

==Principal investigators and researchers==

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

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

==List of PACE trial publications==

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

==References==

<references>
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<ref name="PACEmanualSSMC">{{citation
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<ref name="PACEmanualPAPT">{{citation
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| date = Nov 2004
}}</ref>
<ref name="PACEmanualPCBT">{{citation
| last1 = PACE Trial Management Group | authorlink1 = PACE Trial Management Group
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| date = Nov 2004
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<ref name="pace2006protocolv5">{{citation
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<ref name="pace2007protocol">{{citation
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}}</ref>

<ref name="pace2011press1">{{citation
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| journal = The Lancet TV
| date = 17 Feb 2011
| url = https://www.youtube.com/watch?v=MR16NQhHdik
}}</ref>
<ref name="pace2011press2">{{citation
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| journal = The Lancet TV
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}}</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
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| last20 = on behalf of the PACE Trial Management Group | authorlink20 = PACE Trial Management Group
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<ref name="pace2011LancetEd">{{citation
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<ref name="pace2012CE">{{citation
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<ref name="pace2013a">{{citation
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<ref name="pace2013corrbmj664559">{{citation
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<ref name="pace2013sap">{{citation
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| pmid = 26359750 | doi = 10.1016/S2215-0366(14)00069-8
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| last4 = Sharpe | first4 = M | authorlink4 = Michael Sharpe
| last5 = Pickles | first5 = AR | authorlink5 = Andrew Pickles
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| last5 = Walker | first5 = J | authorlink5 = Jane Walker
| last6 = White | first6 = PD | authorlink6 = Peter White
| title = Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial
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| pmid = 26521770 | doi = 10.1016/S2215-0366(15)00317-X
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| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/
}}</ref>
<ref name="Schneider20160219comm">{{citation
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| title = Reader's comment on Leonid Schneider's blog - PACE team disregarded the MRC data sharing policy
| journal = ForBetterScience Blog
| date = 19 Feb 2016
| url = https://forbetterscience.wordpress.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/comment-page-2/#comment-356
}}</ref>
<ref name="Schneider20160405">{{citation
| last1 = Schneider | first1 = Leonid | authorlink1 = Leonid Schneider
| title = Does The Lancet care about patients?
| journal = ForBetterScience Blog
| date = 5 Apr 2016
| url = https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
}}</ref>
<ref name="SchneiderIndex">{{citation
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| url = https://forbetterscience.com/?s=pace+trial
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| title = (correspondence) Patient reaction to the PACE trial
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</references>

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

Millions Missing protests

2018-05-22T11:48:34Z

Blue Agent:/* May 2018 Protests */ altering text

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly in part due to the critical success of the acclaimed Unrest documentary.

==Photos from 2018==

===Europe===
*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-22T11:47:12Z

Blue Agent:moving things about

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly due to the critical success of the acclaimed Unrest documentary.

==Photos from 2018==

===Europe===
*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-22T11:45:09Z

Blue Agent:brief write up of MM 2018

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly due to the critical success of the acclaimed Unrest documentary.

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-22T11:40:11Z

Blue Agent:brief write up of MM 2018

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. Press coverage of the protests has become increasingly extensive, possibly due to the critical success of the acclaimed Unrest documentary.

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions missing 2018 - Sheffield photos

2018-05-21T22:41:45Z

Blue Agent:people protesting in sheffield

[[File:Shoes at mm sheffield 1.jpeg]]

[[File:Millions missing fargate.jpg]]

File:Millions missing fargate.jpg

2018-05-21T22:36:35Z

Blue Agent:some people and some shoes in sheffield

some people and some shoes in sheffield

Millions Missing protests

2018-05-21T22:35:14Z

Blue Agent:/* Europe */

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-21T22:33:14Z

Blue Agent:/* Europe */

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*Photos from Sheffield, UK
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-21T20:27:12Z

Blue Agent:added a link to a page i did make

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield]
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions missing 2018 - Sheffield photos

2018-05-21T20:24:39Z

Blue Agent:a photo

[[File:Shoes at mm sheffield 1.jpeg]]

File:Shoes at mm sheffield 1.jpeg

2018-05-21T20:22:45Z

Blue Agent:some shoes at a protest

some shoes at a protest

Millions Missing protests

2018-05-21T20:01:54Z

Blue Agent:/* Europe */

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016. The protests took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world. Protest also occurred online.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==September 2016 protests==
Larger protests in a larger number of cities around the world are planned for September 27th 2016.

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*Photos from Sheffield
*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

== Featured in media reporting ==
[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]