Robert Courtney

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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).[1] 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.[2]

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.[3]

Freedom of information requests[edit | edit source]

Letters[edit | edit source]

Responses[edit | edit source]

Comment: Submitted to... Cochrane Database of Systematic Reviews[edit | edit source]

Formal complaint to Dr. David Tovey, Editor in Chief of the Cochrane Library[edit | edit source]

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[1] (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.[4][1] 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.[5]

In 2018, Courtney's lengthy Cochrane complaint, submitted shortly before his death, led to an independent Cochrane review that supported his scientific criticisms,[6] 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,[7] 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.[8]

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.[9]

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.[10] Mr Courtney featured in Dialogues for a neglected illness, which is due for release in 2021.[11]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 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.
  2. ↑ 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.
  3. ↑ 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.
  4. ↑ 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.
  5. ↑ 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.
  6. ↑ "Formal Complaint re 'Exercise therapy for chronic fatigue syndrome'" (PDF). Cochrane. April 10, 2018.
  7. ↑ Tuller, David (October 23, 2018). "A statement in support of Cochrane". Virology blog.
  8. ↑ Bastian, Hilda (May 31, 2021). "Cochrane Exercise and ME/CFS Review Update: May 2021". community.cochrane.org. Retrieved November 18, 2021.
  9. ↑ 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.
  10. ↑ 10.0 10.1 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.
  11. ↑ "Dialogues for ME/CFS". The ME Association. February 4, 2020. Retrieved November 18, 2021.

See biopsychosocial model.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

See Agency for Healthcare Research and Quality.

Agency for Healthcare Research and Quality (AHRQ) - Agency for Healthcare Research and Quality is a United States government agency under the U.S. Department of Health and Human Services. Their mission is "to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. A representative of the Agency for Healthcare Research and Quality sat on the (now disbanded) CFSAC committee as an Ex Officio Member.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

See ME/CFS.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

NICE guidelines Clinical guidelines used in the UK.

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