List of scientific and media response to release of PACE trial data

Follow the release of the PACE trial data and subsequent reanalysis, there was extensive coverage in the media, scientific journals, and other outlets. The following includes a list of coverage.

General media coverage

 * 17 August 2016 - Retraction Watch Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study.
 * 18 August 2016 - Dagens Medicine, Sweden Döms lämna ut råmaterial till Pace-studien
 * 22 August 2016 - BMJ Tribunal orders university to release data from PACE chronic fatigue study
 * 19 August 2016 - iNews UK Chronic Fatigue Syndrome sufferers have just had a small victory, iNews UK,
 * 19 August 2016 - iNews UK Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released, iNews UK,
 * 19 August 2016 - Applied Clinical Trials - Tribunal Orders Release of Withheld Data from London Trial
 * 22 August 2016 - WDDTY Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
 * 27 August 2016 - The Conversation Tribunal was right to order release of chronic fatigue trial data, Jonathan Edwards, 27 Aug 2016.
 * 30 August 2016 - SBS.Com Australia Do you suffer from Chronic Fatigue Syndrome? There's some good news for you
 * 6 September 2016 - Huffington Post Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails
 * 12 September 2016 - WDDTY Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study
 * 21 September 2016 - STAT News by Julie Rehmeyer Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
 * 21 September 2016 - Business Insider UK How millions of patients with a crippling, misunderstood disease were misled by bad science/
 * 21 September 2016 - New York Mag, Science of US The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title/
 * 22 September 2016 - Patient POV Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial/
 * 22 September 2016 - MedPage Today PACE Takedown
 * 23 September 2016 - Dagens Medicine, Sweden Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data
 * 23 September 2016 - Science Alert Bad science has misled millions with chronic fatigue, court order reveals
 * 24 September 2016 - Retraction Watch controversial PACE study re-analyzed
 * 26 September 2016 - Health Insights UK Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.
 * 28 September 2016 - The Times Exercise and therapy cure for ME is ‘seriously flawed’
 * 29 September 2016 - BMJ Reanalysis of PACE trial reignites row over chronic fatigue treatment
 * 2 October 2016 - The Canary 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 Was advice for people with Chronic Fatigue Syndrome all wrong?
 * 6 October 2016 - The Limbic PACE trial labeled a sham
 * 7 October 2016 - 6 Minutes, Australia Analysis rekindles chronic fatigue controversy
 * 9 October 2016 - Aftenposten, Norway Forskningsjuks eller rabiate pasienter?
 * 17 October 2016 - The Telegraph Doctor's Diary: Gove was right, we have had enough of experts
 * 20 October 2016 - Hippocratic Post ME: The truth about exercise and CBT
 * 19 October 2016 - Deutschland Funk Radio (Germany) Patienten fechten Studienergebnisse an/ Patients are challenging study results
 * 27 October 2016 - Undark For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease by Dr David Tuller
 * 31 October 2016 - Undark Undark Podcast #8: Worse Than the Disease with NYT Science Times editor David Corcoran & David Tuller
 * 2 November 2016 - The Times I got ME and thought: ‘This is the end
 * 17 August 2016 - QMUL "studying" PACE data-release ruling, #MEAction, 17 Aug 2016.
 * 7 December 2016 - Private Eye Trial on Trial  and correspondence
 * 19 December 2016 - Undark A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)
 * 1 January 2017 - Suomen Kuvalehti Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi
 * 17 January 2017 - News.com Australia How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery
 * 19 January 2017 - Fysioterapeuten, Norway Omstridt CFS/ME-studie var manipulert/ Controversial CFS / ME study was manipulated
 * 8 February 2017 - New Scientist We need transparent trials to keep confidence in medicine and response by PACE author.
 * 20 February 2017 - Carte Blanche South Africa (Investigative Journalism TV)  - CFS: Millions Missing
 * 8 March 2017 - Observant, Netherlands (Mythbusters) Myth: ME is a mental illness and response by PACE authors
 * 18 March 2017 - The New York Times (Sunday Review) by Julie Rehmeyer & David Tuller Getting It Wrong on Chronic Fatigue Syndrome
 * 21 March 2017 - The Guardian Yet more research shows chronic fatigue syndrome is real. When will health services catch up?
 * 22 March 2017 - Observant, Netherlands, Gedrags- en bewegingstherapie zijn schadelijk / "Behavioral and movement therapy are harmful"
 * 23 March 2017 - The Conversation (Academic Rigour, journalistic flair) How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma by Prof Steven Lubet and on MedicalXpress and Associated Press (AP) The Big Story
 * 27 March 2017 - Observant, Netherlands, (Mythbusters) PACE trial misrepresents their own results again by Dr Mark Vink
 * 29 March 2017 - Observant, Netherlands, Stunned by the absence of critical thinking” by Dr Carolyn Wilshire
 * 26 March 2017 - Jerusalem Post, Israel Wrong of Chronic Fatigue Syndrome
 * 27 March 2017 - Observant, Netherlands, No scientific ground to stand on by Dr David Tuller
 * Apr 4, 2017 - Science Based Medicine, 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) -   Sick and Tired  Sick and Tired on PRI (30.54)
 * 9 July 2017 - New Yorker by Andrew Gelman A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research
 * 13 July 2017 - Medisch Contact, Netherlands Ongemakkelijke (on)waarheden/ 'Inconvenient (un)truth' (English translation)
 * 3 Aug 2017 - Mining Journal 'Chronic fatigue syndrome reality conflicts with medical study'
 * 8 Sept 2017 - Medisch Contact, Netherlands CVS/ME – Nog meer ongemakkelijke (on)waarheden / CVS / ME - More uncomfortable (on) truths
 * 22 Sept 2017 - Medisch Contact, Netherlands  CVS/ME – de non-dialoog /
 * 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg PACE-studien'/ Time to Reject the PACE Study
 * 3 Oct 2017 - Volkskrant, Netherlands 'Als je CVS hebt is naar de wc gaan al een marathon'
 * 5 Oct 2017 - Metro, Netherlands De professor gelooft in sprookjes / The professor believes in fairy tales by Lou Corsius in response to Bij CVS/ME is cgt terecht eerstekeusbehandeling in Reformatorisch Dagblad by Gijs Bleijenberg.
 * 10 October 2017 - Reformatorisch Dagblad, Netherlands Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet
 * 13 October 2017 - NPO1, EenVandaag, Netherlands Grote controverse over behandeling chronische vermoeidheid.
 * 23 October 2017 - Morning Star ME Sufferers Being Shamefully Let Down By Professionals
 * 2 November 2017 - Huffington Post UK Edition Will The UK Establishment Finally Stop Denying The Reality Of ME? by Dr Simon Duffy (featuring Unrest film)
 * 10 November 2017 - Psychology Today Chronic Fatigue Syndrome Patients: More Research Backing You Up
 * 3 January 2018 - Nature 'A reboot for chronic fatigue syndrome research' (covers the impact on research) and responses from PACE authors and others.
 * 7 January 2018 - Independent 'Time for Unrest: Why patients with ME are demanding justice' (featuring Unrest film)
 * 8 February 2018 - The Herald  Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial

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

 * 19th January 2016 - Scientists Demand Transparency on PACE Trial
 * 3 October 2016 - Judge Dismisses QMUL’s Appeal, University Must Release PACE Data
 * 14 November 2016 - PACE Trial Data Released/

Blogs

 * Solve CFS - Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound
 * OccupyME - PACE: Grossly Exaggerated
 * The Faculty Lounge by Steven Lubet - The PACE Study Results Exposed as Meaningless and Harmful
 * Academic Health Economist - Data sharing and the cost of error
 * BMJ - Simon McGrath: PACE trial shows why medicine needs patients to scrutinise studies about their health
 * Intelligent Medicine (Podcast) - Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back (20.53)
 * Hannah Radenkova - The PACE trial Fiasco

Media Response by PACE authors

 * 30 September 2016 - Guardian If my team’s research on ME is rejected, the patients will suffer by Peter White
 * 21 September 2016 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.
 * 30 September 2016 - Discover Magazine  'Open Data and CFS/ME – A PACE Odyssey Part 1' (Part 2 was never published by Neuroskeptic)

Scientific Journals

 * Oct 5, 2016 - International Journal of Care Coordination - editorial 'Can scientific evidence be valid if irrelevant to patients?'
 * Sep 15, 2016 - Dr Keith Geraghty and Charlotte Blease in the Journal of Health Psychology 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent'
 * Nov 1, 2016 - Dr Keith Geraghty pubished in The Journal Of Health Psychology ‘PACE-Gate’: When clinical trial evidence meets open data access

Some of the PACE authors had a 'Response to the editorial' in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.


 * Jan 10, 2017 - Dr Mark Vink published in Journal of Neurology and Neurobiology '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'
 * Mar 1, 2017 - Luis Nacul, Eliana M Lacerda, Caroline C Kingdon, Hayley Curran, Erinna W Bowman 'How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?'
 * Mar 7, 2017 - Prof Steven Lubet, Law Professor at NorthWestern University published in the Journal of Health Psychology 'Investigator bias and the PACE trial'
 * Mar 20, 2017 - Tom Kindlon 'Do graded activity therapies cause harm in chronic fatigue syndrome?'
 * Mar 24, 2017 - Dr Carolyn Wilshire in the Journal of Health Psychology 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial'
 * Mar 24, 2017 - Prof Jonathan Edwards 'PACE team response shows a disregard for the principles of science'
 * Apr 9, 2017 - Dr Charles Shepherd ‘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’
 * Apr 10, 2017 - Keith Petrie and John Weinman '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.
 * Apr 27, 2017 - Dr Mark Vink 'PACE trial authors continue to ignore their own null effect'
 * Apr 27, 2017 - Dr David Tuller 'Once again, the PACE authors respond to concerns with empty answers'
 * May 12, 2017 - Karen Kirke 'PACE investigators’ response is misleading regarding patient survey results'
 * May 12, 2017 - Bart Stouten 'PACE-GATE: An alternative view on a study with a poor trial protocol\
 * May 18, 2017 - Prof Keith Laws "Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis?"
 * May 29, 2017 - Dr Ellen Goudsmit and Sandra Howes 'Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment'
 * Jun 14, 2017 - Prof Steven Lubet 'Defense of the PACE trial is based on argumentation fallacies'
 * Jun 14, 2017 - Dr Keith Geraghty 'Further commentary on the PACE trial: Biased methods and unreliable outcomes'
 * Jun 19, 2017 - Graham McPhee 'Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome' with accompanying video 'Objective Evidence & CFS'
 * Jun 27, 2017 - Dr Susanna Agardy 'Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman'
 * Aug 10, 2017 - Meg Allen and Helen Spandler published '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).
 * Sep 8, 2017 - 'The effects of therapies for Myalgic Encephalomyelitis and chronic fatigue syndrome should be assessed using objective measures'