Robert Courtney

Robert 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.

Robert Courtney passed away on March 7, 2018 at the age of 48. A 2020 ME/CFS proteomics study that found evidence of immune dysregulation was dedicated to his memory.

Freedom of information requests

 * 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

 * 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

 * 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

 * 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

 * 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.)

Publications on ME/CFS

 * 2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT (Full Text)

Learn more

 * 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?