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{{NeedsImage}} '''Robert Courtney''' or '''Bob Courtney''' (d. March 7, 2018) was a patient advocate for [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS) and an outspoken critic of the [[PACE trial]] and the [[:Category:psychological paradigm|biopsychosocial model]] (BPS) of [[chronic fatigue syndrome]] (CFS).<ref name="Wilshire, 2018" /> 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 [[graded exercise therapy|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.<ref name="ItsAStart">{{Cite web|url=https://absolutelymaybe.plos.org/2019/10/03/its-a-start-the-amended-version-of-the-cochrane-review-on-exercise-and-cfs/ | title = It's a Start: The Amended Version of the Cochrane Review on Exercise and CFS | last = Bastian | first=Hilda | authorlink=Hilda Bastian | date = 2019-10-03 | website = Absolutely Maybe|language=en-US|archive-url=|archive-date=|url-status=|access-date=2021-11-18}}</ref> Robert Courtney passed away on March 7, 2018 at the age of 48. A [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373296/ 2020 ME/CFS proteomics study] that found evidence of [[immune system|immune]] dysregulation was dedicated to his memory.<ref name="Milivojevic202">{{Cite journal | last = Milivojevic | first = Milica | last2 = Che | first2 = Xiaoyu | last3 = Bateman | first3 = Lucinda | last4 = Cheng | first4 = Aaron| last5 = Garcia | first5 = Benjamin A. | last6 = Hornig | first6 = Mady | last7 = Huber | first7 = Manuel | last8 = Klimas | first8 = Nancy G. | last9 = Lee | first9 = Bohyun | date = 2020-07-21 | title = Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373296/|journal=PLoS ONE|volume=15|issue=7| pages = e0236148|doi=10.1371/journal.pone.0236148|issn=1932-6203|pmc=7373296|pmid=32692761}}</ref> ==Freedom of information requests== *May 15, 2011, [https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa FOI request to Medical Research Council: Request for raw data from the PACE Trial] (Denied) *Jun 9, 2011, [https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa_2 FOI request to QMUL: Request for raw data from the PACE Trial] (Denied) *Mar 29, 2012, [https://www.whatdotheyknow.com/request/request_for_deterioration_rates FOI request to QMUL: Request for deterioration rates for PACE Trial] (Denied) *Sep 26, 2012, [http://www.informationtribunal.gov.uk/DBFiles/Decision/i1020/20130522%20Decision%20EA20120229.pdf Appeal of Information Commissioner's Decision Notice No: FS50451416] (Appeal is allowed) *Oct 26, 2012, [https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po FOI request to QMUL: PACE Trial: Recovery Rates and Positive Outcome Rates] (Denied) *Nov 4. 2012, [https://www.whatdotheyknow.com/request/the_pace_trial_the_normal_range FOI request to QMUL: The PACE Trial - the 'normal range' data analysis] (Denied) *Nov 6, 2012, [https://www.whatdotheyknow.com/request/cfsme_definition FOI request to Department of Health: CFS/ME definition] (Partially successful) *Nov 18, 2012, [https://www.whatdotheyknow.com/request/distinguishing_between_cfsme_who 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, [https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2 FOI request to QMUL: PACE Trial: Recovery Rates and Positive Outcome Rates (repeat request)] (Denied) ==Letters== *Jul 19, 2013, [http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-2013/ Journal of Psychological Medicine - (correspondence) "Six letters concerning the paper by White et al (2013) on the PACE Trial"] *Jun 19, 2013, [http://www.csp.org.uk/frontline/article/letters-19-june-2013 Chartered Society of Physiotherapy - Letters: "GET Real" by Robert Courtney] *Dec 10, 2013, [http://link.springer.com/article/10.1007/s00431-013-2234-x/fulltext.html 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, [http://www.tandfonline.com/doi/abs/10.3109/09638288.2014.952453?journalCode=idre20 Disability and Rehabilitation - Letter to the Editor: "Harms and benefits associated with exercise therapy for CFS/ME" by Robert Courtney] *Jan 15, 2015, [http://www.bmj.com/content/350/bmj.h227/rr-20 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, [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext The Lancet Psychiatry - (correspondence) "Doubts over the validity of the PACE hypothesis" by Robert Courtney] *Feb 16, 2016, [http://www.ncbi.nlm.nih.gov/pubmed/26359750#cm26359750_14269 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, [http://www.meassociation.org.uk/2013/07/pace-trial-letters-and-reply-journal-of-psychological-medicine-august-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, [http://www.tandfonline.com/doi/full/10.3109/09638288.2014.1002581 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 [https://www.dropbox.com/s/uhy95caezsmcue7/Robert%20Courtney%20Cochrane%20complaint(1).zip?dl=0&file_subpath=%2F1+Cochrane+Review+-+Exercise+++++++++++++++++++++++++++therapy+for+CFS+-+FINE+++++trial+unpublished+++++data.pdf Query re use of post-hoc unpublished outcome data: Scoring system for the Chalder fatigue scale, Wearden 2010] * May 1, 2016 [https://www.dropbox.com/s/uhy95caezsmcue7/Robert%20Courtney%20Cochrane%20complaint(1).zip?dl=0&file_subpath=%2F2+Cochrane+Review+-+Exercise+++++++++++++++++++++++++++therapy+for+CFS+-+PACE+++++trial+selective+++reporting+++++++++++bias.pdf Assessment of Selective Reporting Bias in White 2011] * May 12, 2016 [https://www.dropbox.com/s/uhy95caezsmcue7/Robert%20Courtney%20Cochrane%20complaint(1).zip?dl=0&file_subpath=%2F3+Cochrane+Review+-+Exercise+++++++++++++++++++++++++++therapy+for+CFS+-+++++Misreporting+of+outcomes+for++++++++++physical++++++++++functi+-+Copy.pdf 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 [https://www.dropbox.com/s/uhy95caezsmcue7/Robert%20Courtney%20Cochrane%20complaint(1).zip?dl=0&file_subpath=%2F4+Cochrane+Review+-+Exercise+++++++++++++++++++++++++++therapy+for+CFS+-+Primary++++outcome++switching.pdf 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 [https://www.dropbox.com/s/uhy95caezsmcue7/Robert%20Courtney%20Cochrane%20complaint(1).zip?dl=0&file_subpath=%2FRobert+Courtney+Cochrane+complaint.pdf 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== *2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT<ref name="Wilshire, 2018">{{Cite journal | last1 = Wilshire | first1 = C | last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon | last3 = Courtney | first3 = R | authorlink3 = Robert Courtney | last4 = Matthees | first4 = A | authorlink4 = Alem Matthees | last5 = Tuller | first5 = D | authorlink5 = David Tuller | last6 = Geraghty | first6 = K | authorlink6 = Keith Geraghty | last7 = Levin | first7 = B | authorlink7 = Bruce Levin | title = Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT | journal = BMC Psychology | doi = 10.1186/s40359-018-0218-3 | volume = 6 | issue = 6 | page = | date = 2018 | url = 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 |pages=|pmc=|pmid=|quote= | author-link = Carolyn Wilshire|access-date=|via=}}</ref> [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 (Full Text)] ==Withdrawal of graded exercise therapy as a treatment == 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.<ref name="rapidresponse2015">{{Cite journal | date = Jan 15, 2015 | url = http://www.bmj.com/content/350/bmj.h227/rr-20 | title = 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" | first = Robert | last = Courtney|journal=[[The BMJ]]}}</ref><ref name="Wilshire, 2018" /> 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.<ref name="Smith2016">{{cite journal | vauthors = Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M | title = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219| journal = Evidence Report/Technology Assessment | pages = 1–433 | date = Dec 2014 | pmid = 30313001 | doi = 10.23970/AHRQEPCERTA219 | url = https://www.ncbi.nlm.nih.gov/books/NBK379582/ | publisher = Agency for Healthcare Research and Quality (US)}}</ref> In 2018, Courtney's lengthy Cochrane complaint, submitted shortly before his death, led to an independent Cochrane review that supported his scientific criticisms,<ref name="CEU">{{Cite web | title = Formal Complaint re ‘Exercise therapy for chronic fatigue syndrome’ | date = Apr 10, 2018 |publisher =[[Cochrane]] | url=https://www.virology.ws/wp-content/uploads/2019/03/Cochrane-Report-on-Courtney-Complaint.pdf}}</ref> 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,<ref name="openletter">{{Cite web|url=https://www.virology.ws/2018/10/23/a-statement-in-support-of-cochrane/ | date = Oct 23, 2018 | first = David | last = Tuller | authorlink = David Tuller|website =[[Virology blog]] | title = A statement in support of Cochrane|access-date=|archive-url=|archive-date=|url-status=}}</ref> 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.<ref>{{Cite web|url=https://community.cochrane.org/organizational-info/people/central-executive-team/editorial-methods/projects/stakeholder-engagement-high-profile-reviews-pilot/cochrane-exercise-and | title = Cochrane Exercise and ME/CFS Review Update: May 2021 | last = Bastian | first=Hilda | authorlink=Hilda Bastian | date = May 31, 2021 | website = community.cochrane.org|language=en|archive-url=|archive-date=|url-status=|access-date=2021-11-18}}</ref> 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.<ref name="niceng206">{{Cite web|url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> ==Myalgic Encephalomyelitis == Robert Courtney became [[severe and very severe ME|very severely ill with ME]] in the final years of his life. After he [[suicide|took his own life]] in April 2018, Professor James Coyne, who knew him, questioned if the [[Medical neglect and abuse|medical abuse]] he had experienced or his battle with [[Cochrane]] had caused his death.<ref name=":0" /> Mr Courtney featured in [[Dialogues for a neglected illness]], which is due for release in 2021.<ref name="Dialogues">{{Cite web|url=https://meassociation.org.uk/dialogues/ | title = Dialogues for ME/CFS | last = | first = | authorlink = | date = 2020-02-04 | website = The ME Association|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2021-11-18}}</ref> ==See also== *[[PACE trial]] *[[Graded exercise therapy]] *[[Cochrane]] *[[Dialogues for a neglected illness]] *[[Small intestinal bacterial overgrowth]] (SIBO) ==Learn more == *2018, [https://www.meaction.net/2018/03/19/a-tribute-to-robert-courtney/ A tribute To 'Bob' – Robert Courtney, ME Activist, Fundraiser, Researcher, And Friend] *2018, [https://www.research.manchester.ac.uk/portal/en/media/findings-of-5m-me-chronic-fatigue-study-worthless(2472793e-500d-4978-b42a-15e5edd85bcf).html Findings of £5m ME Chronic Fatigue Syndrome Study Worthless] - The Times ([https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr original)] *[https://www.justgiving.com/teams/BobBobME In Loving Memory of Robert Courtney (Bob)] * [https://mindthebrain.blog/2018/10/19/the-lost-last-year-of-one-of-the-key-two-people-in-getting-the-cochrane-review-of-exercise-withdrawn/ 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?]<ref name=":0">{{Cite web|url=https://www.coyneoftherealm.com/blogs/mind-the-brain/the-lost-last-year-of-one-of-the-key-two-people-in-getting-the-cochrane-review-of-exercise-withdrawn | title = The lost last year of one of the key two people in getting the Cochrane review of exercise withdrawn | last = Coyne | first=James | date = Oct 19, 2018 | website = Coyne of the Realm|language=en|archive-url=|archive-date=|url-status=|access-date=2018-10-19|authorlink=James Coyne}}</ref> ==References== {{Reflist}} [[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:British advocates or allies]] [[Category:Psychological paradigm critics]] [[Category:PACE trial critics]] [[Category:Citizen scientists]] [[Category:Deceased people with ME, CFS, and/or FMS]]
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