Robert Courtney or Bob Courtney (d. March 7, 2018) was a patient advocate for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and an outspoken critic of the PACE trial and the biopsychosocial model (BPS) of chronic fatigue syndrome (CFS). He authored numerous published letters in medical journals regarding the PACE trial and, also, filed freedom of information requests in an attempt to get the authors of the PACE trial to release the full trial data to the public for scrutiny.
Mr Courtney's complaint about the Cochrane review of exercise therapy for chronic fatigue syndrome failing to meet Cochrane's own scientific standards led to a series of revisions and updates which remained ongoing after his death.
Freedom of information requests[edit | edit source]
- May 15, 2011, FOI request to Medical Research Council: Request for raw data from the PACE Trial (Denied)
- Jun 9, 2011, FOI request to QMUL: Request for raw data from the PACE Trial (Denied)
- Mar 29, 2012, FOI request to QMUL: Request for deterioration rates for PACE Trial (Denied)
- Sep 26, 2012, Appeal of Information Commissioner's Decision Notice No: FS50451416 (Appeal is allowed)
- Oct 26, 2012, FOI request to QMUL: PACE Trial: Recovery Rates and Positive Outcome Rates (Denied)
- Nov 4. 2012, FOI request to QMUL: The PACE Trial - the 'normal range' data analysis (Denied)
- Nov 6, 2012, FOI request to Department of Health: CFS/ME definition (Partially successful)
- Nov 18, 2012, FOI request to National Institute for Health and Clinical Excellence: Distinguishing between CFS/ME (WHO ICD-10 G93.3) and Neurasthenia (WHO ICD-10 F48.0) (Denied)
- Oct 29, 2013, FOI request to QMUL: PACE Trial: Recovery Rates and Positive Outcome Rates (repeat request) (Denied)
Letters[edit | edit source]
- Jul 19, 2013, Journal of Psychological Medicine - (correspondence) "Six letters concerning the paper by White et al (2013) on the PACE Trial"
- Jun 19, 2013, Chartered Society of Physiotherapy - Letters: "GET Real" by Robert Courtney
- Dec 10, 2013, European Journal of Pediatrics - (correspondence) "Improvement rates in adolescent patients with chronic fatigue syndrome after receiving cognitive behavioural therapy" by Robert Courtney
- Aug 19, 2014, Disability and Rehabilitation - Letter to the Editor: "Harms and benefits associated with exercise therapy for CFS/ME" by Robert Courtney
- Jan 15, 2015, The BMJ - Response: “The cognitive-behavioural model of illness for chronic fatigue syndrome and myalgic encephalomyelitis is not supported by the outcomes of the PACE trial” by Robert Courtney, in response to "Tackling fears about exercise is important for ME treatment, analysis indicates"
- Apr 2015, The Lancet Psychiatry - (correspondence) "Doubts over the validity of the PACE hypothesis" by Robert Courtney
- Feb 16, 2016, PubMed - Comment "A study that uses questionable assumptions rather than empirical evidence leads to conclusions that stretch credibility." by Robert Courtney, in response to "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial."
Responses[edit | edit source]
- Jul 19, 2013, Journal of Psychological Medicine - (correspondence) Reply to "Six letters concerning the paper by White et al (2013) on the PACE Trial" by Peter White, Kimberley Goldsmith, Anthony Johnson, Trudie Chalder and Michael Sharpe
- Jan 19, 2015, Disability and Rehabilitation - (correspondence) "Author’s comments in response to letters by Tom Kindlon, Anna Sheridan and Robert Courtney" by Peter William Gladwell
Comment: Submitted to... Cochrane Database of Systematic Reviews[edit | edit source]
- Apr 16, 2016 Query re use of post-hoc unpublished outcome data: Scoring system for the Chalder fatigue scale, Wearden 2010
- May 1, 2016 Assessment of Selective Reporting Bias in White 2011
- May 12, 2016 A query regarding the way outcomes for physical function and overall health have been described in the abstract, conclusion and discussion of the review
- Jun 3, 2016 Concerns regarding the use of unplanned primary outcomes in the Cochrane review
Formal complaint to Dr. David Tovey, Editor in Chief of the Cochrane Library[edit | edit source]
- Feb 12, 2018 This is a formal complaint with respect to the current version of "Exercise therapy for chronic fatigue syndrome" by L. Larun et al. (Cochrane Database Syste Rev. 2017; CD003200.)
Peer-reviewed publications on ME/CFS[edit | edit source]
- 2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT (Full Text)
Withdrawal of graded exercise therapy as a treatment[edit | edit source]
Mr Courtney's scientific analysis of the evidence for the use of graded exercise therapy (GET) in patients with ME/CFS, and of the flawed biopsychosocial model as a justification for GET, was in agreement with that of a number of other researchers and clinicians, and was vindicated by the 2016 release of the full patient outcome data for the controversial PACE trial, which showed the 12 weeks of exercise therapy resulted in no statistically significant improvement in walking distance or employment for CFS patients. In the United States, a 2016 scientific review by the AHRQ led to the CDC withdrawing the recommendation of GET and CBT for ME/CFS patients in 2017.
In 2018, Courtney's lengthy Cochrane complaint, submitted shortly before his death, led to an independent Cochrane review that supported his scientific criticisms, and Cochrane's withdrawal of the patient exercise data followed. After Courtney's death in 2018, an open letter signed by over 40 scientists and researchers supported the Cochrane decision to withdraw it on scientific grounds, and the original Cochrane reviewers then submitted repeated revisions of the systematic review. Cochrane then announced that the outdated review would be replaced with a new one, written by a different team, although this has not yet been published.
Cochrane's systematic review was highly influential in a number of countries, including the United Kingdom, which announced a full update of the CFS/ME guidelines in 2019. The new NICE guidelines, published in 2021, included a secondary analysis of the PACE trial data that he co-authored in its evidence review, abandoned support for the biopsychosocial model, and removed the recommendation for graded exercise therapy, downgraded cognitive behavioral therapy from a primary treatment, and changed the widely criticized diagnostic criteria.
Myalgic Encephalomyelitis[edit | edit source]
Robert Courtney became very severely ill with ME in the final years of his life. After he took his own life in April 2018, Professor James Coyne, who knew him, questioned if the medical abuse he had experienced or his battle with Cochrane had caused his death. Mr Courtney featured in Dialogues for a neglected illness, which is due for release in 2021.
See also[edit | edit source]
- PACE trial
- Graded exercise therapy
- Dialogues for a neglected illness
- Small intestinal bacterial overgrowth (SIBO)
Learn more[edit | edit source]
- 2018, A tribute To 'Bob' – Robert Courtney, ME Activist, Fundraiser, Researcher, And Friend
- 2018, Findings of £5m ME Chronic Fatigue Syndrome Study Worthless - The Times (original)
- In Loving Memory of Robert Courtney (Bob)
- Did the struggle to get the Cochrane review withdrawn kill Robert Courtney? Or did the denial of his basic human rights by the medical system?
References[edit | edit source]
- Wilshire, C; Kindlon, T; Courtney, R; Matthees, A; Tuller, D; Geraghty, K; Levin, B (2018). "Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT". BMC Psychology. 6 (6). doi:10.1186/s40359-018-0218-3.
- Bastian, Hilda (October 3, 2019). "It's a Start: The Amended Version of the Cochrane Review on Exercise and CFS". Absolutely Maybe. Retrieved November 18, 2021.
- Milivojevic, Milica; Che, Xiaoyu; Bateman, Lucinda; Cheng, Aaron; Garcia, Benjamin A.; Hornig, Mady; Huber, Manuel; Klimas, Nancy G.; Lee, Bohyun (July 21, 2020). "Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS". PLoS ONE. 15 (7): e0236148. doi:10.1371/journal.pone.0236148. ISSN 1932-6203. PMC 7373296. PMID 32692761.
- Courtney, Robert (January 15, 2015). "The BMJ - Response: "The cognitive-behavioural model of illness for chronic fatigue syndrome and myalgic encephalomyelitis is not supported by the outcomes of the PACE trial" by Robert Courtney, in response to "Tackling fears about exercise is important for ME treatment, analysis indicates"". The BMJ.
- Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (December 2014). "Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219". Evidence Report/Technology Assessment. Agency for Healthcare Research and Quality (US): 1–433. doi:10.23970/AHRQEPCERTA219. PMID 30313001.
- "Formal Complaint re 'Exercise therapy for chronic fatigue syndrome'" (PDF). Cochrane. April 10, 2018.
- Tuller, David (October 23, 2018). "A statement in support of Cochrane". Virology blog.
- Bastian, Hilda (May 31, 2021). "Cochrane Exercise and ME/CFS Review Update: May 2021". community.cochrane.org. Retrieved November 18, 2021.
- NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
- Coyne, James (October 19, 2018). "The lost last year of one of the key two people in getting the Cochrane review of exercise withdrawn". Coyne of the Realm. Retrieved October 19, 2018.
- "Dialogues for ME/CFS". The ME Association. February 4, 2020. Retrieved November 18, 2021.