Intimidation and bullying of PACE trial critics: Difference between revisions

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'''Intimidation and pressure to silence debate''' has been reported by researchers, clinicians and patients after '''criticizing the [[PACE trial|PACE]]''' [[PACE trial|'''trial''']], a large randomized trial on behavioral interventions in [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS). This includes emails and phone calls to the critics’ home institution and superiors, demands for a retraction of articles critical of [[PACE Trial Management Group|PACE]] and complaints to the UK's [[Royal College of General Practitioners]] (RCGP).<ref name=":3" /><ref name=":4" /><ref name=":5" /><ref name=":6" /><ref name=":7" /><ref name=":8" />
'''Intimidation and pressure to silence debate''' has been reported by researchers, clinicians and patients after '''criticizing the [[PACE trial|PACE]]''' [[PACE trial|'''trial''']], a large randomized trial on behavioral interventions in [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS). This includes emails and phone calls to the critics’ home institution and superiors, demands for a retraction of articles critical of [[PACE Trial Management Group|PACE]] and complaints to the UK's [[Royal College of General Practitioners]] (RCGP).<ref name="GeraghtyTweet" /><ref name="thebristolcable" /><ref name="Reinhold" /><ref name="Edwards" /><ref name="Coyne20190220" /><ref name="Struthers" />


== Background ==
== Background ==


=== The PACE trial ===
=== The PACE trial ===
The [[PACE trial]] was a large randomized trial to test the efficacy and safety of several behavioral interventions including [[cognitive behavioral therapy]] (CBT) and [[graded exercise therapy]] (GET) in [[ME/CFS]] patients.<ref name=":9" /> Since the start of the trial in 2003, PACE has been criticized on [[research bias in ME/CFS|methodological]]grounds.<ref>Margaret Williams. [http://www.margaretwilliams.me/2004/critical-considerations.pdf Critical considerations.] 1 st November 2004</ref><ref name=":9">{{Cite web|url=https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6|title=Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy|last=Walwyn|first=Rebecca|last2=DeCesare|first2=Julia C.|date=Dec 2007|website=BMC Neurology|language=en|doi=10.1186/1471-2377-7-6/comments|access-date=2019-02-21|last3=Chalder|first3=Trudie|last4=Sharpe|first4=Michael C.|last5=White|first5=Peter D.}}</ref> Criticism includes invalid [[wikipedia:Inclusion_and_exclusion_criteria|selection criteria]],<ref>{{Cite journal|last=Jason|first=Leonard A.|date=Aug 2017|title=The PACE trial missteps on pacing and patient selection|url=https://www.ncbi.nlm.nih.gov/pubmed/28805518|journal=Journal of Health Psychology|volume=22|issue=9|pages=1141–1145|doi=10.1177/1359105317695801|issn=1461-7277|pmid=28805518}}</ref><ref name=":1">{{Cite web|url=http://www.virology.ws/2015/10/21/trial-by-error-i/|title=TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study|last=|first=|authorlink=David Tuller|last2=|first2=|authorlink2=|date=Oct 21, 2015|website=[[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref><ref>{{Cite journal|last=Goudsmit|first=Ellen|last2=Howes|first2=Sandra|date=Aug 2017|title=Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment|url=https://www.ncbi.nlm.nih.gov/pubmed/28805527|journal=Journal of Health Psychology|volume=22|issue=9|pages=1159–1167|doi=10.1177/1359105317707216|issn=1461-7277|pmid=28805527}}</ref> [http://methods.sagepub.com/reference/encyc-of-research-design/n44.xml ceiling effects] in [[pubmed:26528658/|outcome measurements]],<ref name=":1" /><ref>{{Cite web|url=https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/|title=How bad science misled chronic fatigue syndrome patients|date=2016-09-21|website=STAT|language=en-US|access-date=2019-02-21}}</ref> violation of the [[wikipedia:Declaration_of_Helsinki#Additional_guidelines_or_regulations|declaration of Helsinki]] regarding Good Clinical Practice,<ref name=":1" /><ref name=":2">{{Cite web|url=https://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/|title=David Tuller Tears Apart PACE Trial|last=Anderssen|first=Alex|authorlink=|last2=|first2=|authorlink2=|date=2015-10-21|website=#MEAction|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> and deviation from the [[wikipedia:Protocol_(science)|trials protocol]] without providing [[wikipedia:Sensitivity_analysis|sensitivity analyses]].<ref>{{Cite journal|last=Wilshire|first=Carolyn E.|last2=Kindlon|first2=Tom|last3=Courtney|first3=Robert|last4=Matthees|first4=Alem|last5=Tuller|first5=David|last6=Geraghty|first6=Keith|last7=Levin|first7=Bruce|date=2018-03-22|title=Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/|journal=BMC Psychology|volume=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932}}</ref><ref>{{Cite web|url=https://peterkempblog.wordpress.com/2016/09/10/pace-trial-participants-were-they-exploited/|title=PACE Trial Participants – were they exploited?|last=peterkempblog|date=2016-09-10|website=peterkempblog|language=en|access-date=2019-02-21}}</ref>
The [[PACE trial]] was a large randomized trial to test the efficacy and safety of several behavioral interventions including [[cognitive behavioral therapy]] (CBT) and [[graded exercise therapy]] (GET) in [[ME/CFS]] patients.<ref name="PACEprotocol" /> Since the start of the trial in 2003, PACE has been criticized on [[research bias in ME/CFS|methodological ]]grounds.<ref>Margaret Williams. [http://www.margaretwilliams.me/2004/critical-considerations.pdf Critical considerations.] November 1, 2004</ref><ref name="PACEprotocol">{{Cite web | url = https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6 | title = Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy | last = Walwyn | first = Rebecca | last2 = DeCesare | first2 = Julia C. | date = Dec 2007 | website = BMC Neurology|language=en|doi=10.1186/1471-2377-7-6/comments|access-date=2019-02-21 | last3 = Chalder | first3 = Trudie | last4 = Sharpe | first4 = Michael C. | last5 = White | first5 = PeterD.}}</ref> Criticism includes invalid [[selection criteria]],<ref>{{Cite journal | last = Jason | first = Leonard A. | date = Aug 2017 | title = The PACE trial missteps on pacing and patient selection | url =https://www.ncbi.nlm.nih.gov/pubmed/28805518|journal=Journal of Health Psychology|volume=22|issue=9|pages=1141–1145|doi=10.1177/1359105317695801|issn=1461-7277|pmid=28805518}}</ref><ref name="Tuller2015">{{Cite web | url = http://www.virology.ws/2015/10/21/trial-by-error-i/ | title = TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study | last = Tuller | first = David | authorlink = David Tuller | date = Oct 21, 2015 | website = [[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref><ref>{{Cite journal | last = Goudsmit | first = Ellen | last2 = Howes | first2 = Sandra | date = Aug 2017 | title = Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment | url = https://www.ncbi.nlm.nih.gov/pubmed/28805527|journal=Journal of Health Psychology|volume=22|issue=9|pages=1159–1167|doi=10.1177/1359105317707216|issn=1461-7277|pmid=28805527}}</ref> [http://methods.sagepub.com/reference/encyc-of-research-design/n44.xml ceiling effects] in [[pubmed:26528658/|outcome measurements]],<ref name="Tuller2015" /><ref>{{Cite web | url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ | title = How bad science misled chronic fatigue syndrome patients | date = 2016-09-21 | website = STAT|language=en-US|access-date=2019-02-21}}</ref> violation of the declaration of Helsinki regarding Good Clinical Practice,<ref name="Tuller2015" /><ref name="Tuller-PACE">{{Cite web | url = https://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/ | title = David Tuller Tears Apart PACE Trial | last = Anderssen | first = Alex | authorlink = | date = 2015-10-21 | website = #MEAction|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> and deviation from the [[trial protocol|trial's protocol]] without providing [[Sensitivity analysis|sensitivity analyses]].<ref name="Wilshire2018">{{Cite journal | last = Wilshire | first = Carolyn E. | last2 = Kindlon | first2 = Tom | last3 = Courtney | first3 = Robert | last4 = Matthees | first4 = Alem | last5 = Tuller | first5 = David | last6 = Geraghty | first6 = Keith | last7 = Levin | first7 = Bruce | date = 2018-03-22 | title = Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/|journal=BMC Psychology|volume=6|doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932}}</ref><ref>{{Cite web | url = https://peterkempblog.wordpress.com/2016/09/10/pace-trial-participants-were-they-exploited/ | title = PACE Trial Participants – were they exploited? | last = peterkempblog | date = 2016-09-10 | website = peterkempblog|language=en|access-date=2019-02-21}}</ref>


=== Negative portrayal of PACE critics ===
=== Negative portrayal of PACE critics===
Patients and scientists have requested anonymised data from the PACE trial through [https://ico.org.uk/for-organisations/guide-to-freedom-of-information/what-is-the-foi-act/ Freedom of Information Requests] and other means, to compare the reported findings to the original protocol-specified procedures. Several of these requests have  approved by the Information Commissioner's Office - despite been rejected and labeled “vexatious”<ref>{{Cite web|url=https://www.meaction.net/2015/12/12/vexatious-kings-college-london-dismisses-james-coynes-request-for-plos-one-pace-data/|title=“Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data|date=2015-12-12|website=#MEAction|language=en-US|access-date=2019-02-21}}</ref><ref>{{Cite web|url=https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new|title=Raw 6mwt Data after treatment - a Freedom of Information request to Queen Mary University of London|date=2015-11-01|website=WhatDoTheyKnow|language=en|access-date=2019-02-21}}</ref><ref>{{Cite web|url=https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial|title=Fitness data for PACE trial - a Freedom of Information request to Queen Mary University of London|date=2015-06-29|website=WhatDoTheyKnow|language=en|access-date=2019-02-21}}</ref><ref>{{Cite web|url=http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/|title=A request for data from the PACE trial|last=|first=|authorlink=David Tuller|last2=|first2=|authorlink2=|date=2015-12-17|website=[[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> by the PACE authors’ academic institutions. 
Patients and scientists have requested anonymised data from the PACE trial through [https://ico.org.uk/for-organisations/guide-to-freedom-of-information/what-is-the-foi-act/ Freedom of Information Requests] and other means, to compare the reported findings to the original protocol-specified procedures. Several of these requests haveapproved by the Information Commissioner's Office - despite been rejected and labeled “vexatious”<ref>{{Cite web | url = https://www.meaction.net/2015/12/12/vexatious-kings-college-london-dismisses-james-coynes-request-for-plos-one-pace-data/ | title = “Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data | date = 2015-12-12 | website = #MEAction|language=en-US|access-date=2019-02-21}}</ref><ref>{{Cite web | url = https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new | title = Raw 6mwt Data after treatment - a Freedom of Information request to Queen Mary University of London | date = 2015-11-01 | website = WhatDoTheyKnow|language=en|access-date=2019-02-21}}</ref><ref>{{Cite web | url = https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial | title = Fitness data for PACE trial - a Freedom of Information request to Queen Mary University of London | date = 2015-06-29 | website = WhatDoTheyKnow|language=en|access-date=2019-02-21}}</ref><ref>{{Cite web | url = http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ | title = A request for data from the PACE trial | last = | first = | authorlink = David Tuller | date = 2015-12-17 | website = [[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> by the PACE authors’ academic institutions. 


[[Richard Horton]], editor-in-chief of [[The Lancet]], the scientific journal that published the PACE trial main findings, described critics of PACE as “a fairly small but highly organized, very vocal and very damaging group of individuals who have ... actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”<ref>{{Cite web|url=https://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296|title=Comparison of treatments for chronic fatigue syndrome - the PACE trial|date=2011-04-15|website=Radio National|language=en-AU|access-date=2019-02-21}}</ref>
[[Richard Horton]], editor-in-chief of [[The Lancet]], the scientific journal that published the PACE trial main findings, described critics of PACE as “a fairly small but highly organized, very vocal and very damaging group of individuals who have ... actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”<ref>{{Cite web | url = https://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296 | title = Comparison of treatments for chronic fatigue syndrome - the PACE trial | date = 2011-04-15 | website = Radio National|language=en-AU|access-date=2019-02-21}}</ref>


Critics of the PACE trial have repeatedly been compared to climate change deniers<ref>Fiona Fox. (2017, September 28) [http://www.sciencemediacentre.org/inconvenient-truths/ Inconvenient truths]. Science Media Center. </ref><ref>{{Cite web|url=http://www.virology.ws/2017/07/03/trial-by-error-guest-post-questions-about-professor-sharpes-special-ethics-seminar/|title=Trial by Error, Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’|website=[[Virology blog]]|access-date=2019-02-20}}</ref> and anti-vaccination campaigners.<ref>{{Cite journal|last=Lewandowsky|first=Stephan|last2=Bishop|first2=Dorothy|date=2016-01-28|title=Research integrity: Don't let transparency damage science|url=http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219|journal=Nature News|language=en|volume=529|issue=7587|pages=459|doi=10.1038/529459a}}</ref> Professor of neurology Malcolm Macleod for example said: "If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”<ref>{{Cite web|url=http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/|title=expert reaction to Journal of Health Psychology’s Special Issue on The PACE Trial {{!}} Science Media Centre|language=en-US|access-date=2019-02-21}}</ref>  
Critics of the PACE trial have repeatedly been compared to climate change deniers<ref>Fiona Fox. (2017, September 28) [http://www.sciencemediacentre.org/inconvenient-truths/ Inconvenient truths]. Science Media Center.</ref><ref>{{Cite web | url = http://www.virology.ws/2017/07/03/trial-by-error-guest-post-questions-about-professor-sharpes-special-ethics-seminar/ | title = Trial by Error, Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’|website=[[Virology blog]]|access-date=2019-02-20}}</ref> and anti-vaccination campaigners.<ref>{{Cite journal | last = Lewandowsky | first = Stephan | last2 = Bishop | first2 = Dorothy | date = 2016-01-28 | title = Research integrity: Don't let transparency damage science | url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219|journal=Nature News|language=en|volume=529|issue=7587 | pages = 459|doi=10.1038/529459a}}</ref> Professor of neurology Malcolm Macleod for example said: "If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”<ref>{{Cite web | url = http://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/ | title = expert reaction to Journal of Health Psychology’s Special Issue on The PACE Trial {{!}} Science Media Centre|language=en-US|access-date=2019-02-21}}</ref>


Patients that were critical of the PACE trial have been targeted by an extended smear campaign that variously portrayed them as violent militants or activists engaging in a campaign of harassment.<ref name=":4">{{Cite web|url=https://thebristolcable.org/2017/07/chronic-fatigue-syndrome-bristol-university-and-controversial-science/|title=Chronic fatigue syndrome, Bristol University, and controversial science|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=2017-07-07|website=The Bristol Cable|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2019-02-20|quote=But if there is truth in the criticisms from patients and CFS advocacy groups and charities, the dominance of the ‘extremist’ opponent narrative – the alleged harassment and abuse of researchers into these treatments – is also troubling. While accepting there may be some intemperate opponents, some critics of PACE and the following trials pursuing similar hypotheses, such as FITNET and MAGENTA at Bristol, say researchers are using the ‘militant’ narrative to deflect legitimate criticisms of bad science.}}</ref> During the 2015 first tribunal hearing on the release of the PACE trial data, professor [[Ross Anderson]] made “wild speculations” about “young men, borderline sociopathic or psychopathic” being attached to PACE trial criticism.<ref>{{Cite web|url=https://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/|title=Tribunal orders release of PACE data|last=Anderssen|first=Alex|authorlink=|last2=|first2=|authorlink2=|date=2016-08-16|website=#MEAction|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref><ref>{{Cite web|url=https://inews.co.uk/news/health/tribunal-chronic-fatigue-syndrome-data-released/|title=Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released|last=Gallagher|first=Paul|date=2016-08-19|website=inews.co.uk|language=en-GB|access-date=2019-02-21}}</ref><ref>https://www.me-pedia.org/images/0/0d/First_tier_tribunal_%282015%29_appeal_number_EA-2015-0269.PDF</ref>
Patients that were critical of the PACE trial have been targeted by an extended smear campaign that variously portrayed them as violent militants or activists engaging in a campaign of harassment.<ref name="thebristolcable">{{Cite web | url = https://thebristolcable.org/2017/07/chronic-fatigue-syndrome-bristol-university-and-controversial-science/ | title = Chronic fatigue syndrome, Bristol University, and controversial science | last = | first = | authorlink = | date = 2017-07-07 | website = The Bristol Cable|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2019-02-20|quote=But if there is truth in the criticisms from patients and CFS advocacy groups and charities, the dominance of the ‘extremist’ opponent narrative – the alleged harassment and abuse of researchers into these treatments – is also troubling. While accepting there may be some intemperate opponents, some critics of PACE and the following trials pursuing similar hypotheses, such as FITNET and MAGENTA at Bristol, say researchers are using the ‘militant’ narrative to deflect legitimate criticisms of bad science.}}</ref> During the 2015 first tribunal hearing on the release of the PACE trial data, professor Ross Anderson made “wild speculations” about “young men, borderline sociopathic or psychopathic” being attached to PACE trial criticism.<ref>{{Cite web | url = https://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/ | title = Tribunal orders release of PACE data | last = Anderssen | first = Alex | authorlink = | date = 2016-08-16 | website = #MEAction|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref><ref>{{Cite web | url = https://inews.co.uk/news/health/tribunal-chronic-fatigue-syndrome-data-released/ | title = Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released | last = Gallagher | first = Paul | date = 2016-08-19 | website = inews.co.uk|language=en-GB|access-date=2019-02-21}}</ref><ref>https://www.me-pedia.org/images/0/0d/First_tier_tribunal_%282015%29_appeal_number_EA-2015-0269.PDF</ref>


Authors of a reanalysis of the PACE trial received an abusive review at the British Medical Journal. One of the peer reviewers wrote: "It is about time that they moved on from their obsessive (in the non-psychiatric use of the term) poring over the results of a good (albeit imperfect) randomised controlled trial."<ref name=":0">{{Cite web|url=https://jcoynester.wordpress.com/2017/05/11/patients-writing-about-their-health-condition-were-abused-by-a-peer-reviewer-and-silenced-by-bmj/|title=Patients writing about their health condition were abused by a peer reviewer and silenced by The BMJ|last=Coyne|first=James C.|date=2017-05-11|website=Quick Thoughts|language=en|access-date=2019-02-21}}</ref> The peer reviewer also questioned the diagnosis of some of the authors and their sincerity in criticizing the PACE trial: "Are [the patient authors] absolutely sure that they are writing about syndromes of chronic fatigue? Are they sure they are not simply writing about themselves?"<ref name=":0" />
Authors of a reanalysis of the PACE trial received an abusive review at the British Medical Journal. One of the peer reviewers wrote: "It is about time that they moved on from their obsessive (in the non-psychiatric use of the term) poring over the results of a good (albeit imperfect) randomised controlled trial."<ref name="Coyne2017abused">{{Cite web | url = https://jcoynester.wordpress.com/2017/05/11/patients-writing-about-their-health-condition-were-abused-by-a-peer-reviewer-and-silenced-by-bmj/ | title = Patients writing about their health condition were abused by a peer reviewer and silenced by The BMJ | last = Coyne | first = James C. | date = 2017-05-11 | website = Quick Thoughts|language=en|access-date=2019-02-21}}</ref> The peer reviewer also questioned the diagnosis of some of the authors and their sincerity in criticizing the PACE trial: "Are [the patient authors] absolutely sure that they are writing about syndromes of chronic fatigue? Are they sure they are not simply writing about themselves?"<ref name="Coyne2017abused" />


Scientists and clinicians who expressed concern about the safety of interventions used in the PACE trial were demeaned on social media as "whiners" who "have managed to ensure there is no treatment available for patients with ME."<ref>{{Cite web|url=https://twitter.com/D_Blanchflower/status/1088832025149218816|title=the whiners have managed to ensure there is no treatment available for patients with ME - brilliant|last=Blanchflower|first=Danny|date=2019-01-25|website=Twitter|language=en|access-date=2019-02-21}}</ref> Critics of the PACE trial have been accused of disliking the results<ref>{{Cite web|url=https://twitter.com/ProfRobHoward/status/1093182643498299392|title=“When people don’t like the results of clinical trials they are prone to try and find fault with them”. Exactly. I stand with my colleagues who conducted the PACE trial.@ProfRobHoward|last=Howard|first=Robert|date=2019-02-06|website=Twitter|language=en|access-date=2019-02-21}}</ref> and attempting "to find faults with them which would not be raised if they liked the results."<ref>{{Cite web|url=http://www.sciencemediacentre.org/expert-reaction-to-letter-from-the-hra-to-norman-lamb-regarding-the-st-committees-inquiry-on-research-integrity-and-the-pace-trial/|title=expert reaction to letter from the HRA to Norman Lamb regarding the S&T Committee’s inquiry on Research Integrity and the PACE trial {{!}} Science Media Centre|language=en-US|access-date=2019-02-21}}</ref>
Scientists and clinicians who expressed concern about the safety of interventions used in the PACE trial were demeaned on social media as "whiners" who "have managed to ensure there is no treatment available for patients with ME."<ref>{{Cite web | url = https://twitter.com/D_Blanchflower/status/1088832025149218816 | title = the whiners have managed to ensure there is no treatment available for patients with ME - brilliant | last = Blanchflower | first = Danny | date = 2019-01-25 | website = Twitter|language=en|access-date=2019-02-21}}</ref> Critics of the PACE trial have been accused of disliking the results<ref>{{Cite web | url = https://twitter.com/ProfRobHoward/status/1093182643498299392 | title = “When people don’t like the results of clinical trials they are prone to try and find fault with them”. Exactly. I stand with my colleagues who conducted the PACE trial.@ProfRobHoward | last = Howard | first = Robert | date = 2019-02-06 | website = Twitter|language=en|access-date=2019-02-21}}</ref> and attempting "to find faults with them which would not be raised if they liked the results."<ref>{{Cite web | url = http://www.sciencemediacentre.org/expert-reaction-to-letter-from-the-hra-to-norman-lamb-regarding-the-st-committees-inquiry-on-research-integrity-and-the-pace-trial/ | title = expert reaction to letter from the HRA to Norman Lamb regarding the S&T Committee’s inquiry on Research Integrity and the PACE trial {{!}} Science Media Centre|language=en-US|access-date=2019-02-21}}</ref>


===<div id="deaththreats">Allegations of death threats and smear campaigns</div>===
===<div id="deaththreats">Allegations of death threats and smear campaigns</div>===
{{Shortcut|Death threats}}
{{Shortcut|Death threats}}


From at least 2011, patients critical of the PACE trial, and the [[biopsychosocial model]] of ME/CFS which the PACE trial was based on, have been publicly accused of making death threats against researchers in both the [[United Kingdom]] and the [[United States]].<ref name="Nodeaththreat20120406" />  
From at least 2011, patients critical of the PACE trial and the [[biopsychosocial model]] of ME/CFS have been publicly accused of making death threats against researchers numerous times in both the [[United Kingdom]] and the [[United States]].<ref name="Nodeaththreat20120406" /><ref name="Guardian20110821" /><ref name="TymesTrust2014bts" /><ref name="FOI20150318" /><ref name="SMCUK201110TOP">{{Cite web | last1 = Science Media Centre | authorlink1 = Science Media Centre | last2 = Crawley | first2 = Esther | authorlink2 = Esther Crawley| title = Threats of Persecution
====National Institute of Health ====
| publisher= Science Media Centre | issue = SMC anniversary brochure| page=16 | date = Oct 2011| url= http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf | archive-url = http://web.archive.org/web/20140807031737/http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf | archive-date = Aug 7, 2014}}</ref><ref name="Lewandowsky20160204" /><ref name=":13" /><ref name="SunTimesUK20130505" /><ref name="Telegraph20120928" />
In the UK, British researcher Professor [[Myra McClure]] informed the [[National Institute of Health]] (NIH) that she had received a disturbing phone call from a journalist claiming that a protest of ME/CFS patients involving guns at the NIH and CDC was being planned on the internet, a phone call that later became misinterpreted as credible evidence of "death threats"; this claim was never investigated or reported to the police.<ref name="Nodeaththreat20120406" /> As a result, McClure stated she was withdrawing as a reviewer of ME/CFS research grants and NIH appointed a new panel.<ref name="Nodeaththreat20120406" /> In 2021, it emerged that not only had no patient or patient group made a death threat to McClure, but the NIH had made the unsubstantiated claim to all ME/CFS grant reviewers for the ten year period of 2011-2021 that multiple "death threats" had previously been made to multiple researchers, a practice that continued after new NIH were recruited without the new staff reading the original report.<ref name="Nodeaththreat20120406">http://occupyme.net/2021/04/06/the-death-threat-myth-exposed/?</ref>  
====National Institutes of Health ====
In the UK, British researcher Professor [[Myra McClure]] informed the [[National Institutes of Health]] (NIH) that she had received a disturbing phone call: a journalist informed her that ME/CFS patients were planning an armed protest at NIH and CDC. This phone call was never investigated or reported to the police, and an armed protest never materialized.<ref name="Nodeaththreat20120406" /> In another article, McClure reported, "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months.”<ref name=":13">{{Cite web | url = http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis | title = Chronic fatigue syndrome researchers face death threats from militants | date = 2011-08-20 | website = the Guardian|language=en|access-date=2021-04-07}}</ref> McClure stated she was withdrawing as a reviewer of ME/CFS research grants and NIH appointed a new panel.<ref name="Nodeaththreat20120406" /> In 2021, NIH stated that grant review rosters during the 2011-2021 period were blinded because multiple death threats had been made to multiple researchers; however, an FOA request revealed no such threats were reported to NIH beyond beyond the journalist's call to McClure regarding rumors of activist activity.<ref name="Nodeaththreat20120406">{{Cite web | url = http://occupyme.net/2021/04/06/the-death-threat-myth-exposed/ | title = The Death Threat Myth Exposed | last = Spotlia | first = Jennie | authorlink=Jennie Spotila | date = Apr 6, 2021 | website = Occupy ME|archive-url=|archive-date=|url-status=|access-date=2021-04-08}}</ref>


====Simon Wessely and the PACE trial authors====
====Simon Wessely and the PACE trial authors====
Another 2011 claim from a different researcher in the UK was used as evidence that there were "death threats" to multiple researchers, yet the [[PACE trial]] Freedom of Information Act Tribunal in 2015 found no death threats, and the only evidence of "harassment" was a single researcher, Prof. Professor [[Trudie Chalder]], being heckler once at a seminar in [[Norway]]. Professor Sir [[Simon Wessely]], a center manager for the PACE trial and credited in the research, did not give evidence.<ref name="FirstTierTribunal2015">{{Cite news|title=First-tier tribunal: Information Rights Appeal EA/2015/0269.|url=https://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF|page=40|last=Kennedy|first=Brian|last2=Stephenson|first2=Darryl|last3=Watson|first3=Nigel|quote=The evidence of <nowiki>[expert witness]</nowiki> Professor Anderson that third parties could not identify participants from the information alone and that, when pressed, he said that the chance of an "activist" being able to discover information that would lead to individual identification was remote, it was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder. The identity of those questioning the research, who had signed an open letter or supported it, was impressive.}}</ref> The NIH referred to a 2011 UK newspaper interview of Simon Wessely, but this had been known to be a baseless allegation by 2015, when it was established that no evidence of death threats or violent threats could be provided.<ref name="FirstTierTribunal2015" />
Another 2011 claim from a different researcher in the UK was used as evidence that there were "death threats" to multiple researchers, yet the [[PACE trial]] Freedom of Information Act Tribunal in 2015 found no death threats, and the only evidence of "harassment" was a single researcher, Prof. Professor [[Trudie Chalder]], being heckled once at a seminar in [[Norway]]. Professor Sir [[Simon Wessely]], a center manager for the PACE trial and credited in the research, did not give evidence.<ref name="pace2011a">{{cite journal | last1 = White | first1 = PD | authorlink1 = Peter White | last2 = Goldsmith | first2 = KA | authorlink2 = Kimberley Goldsmith | last3 = Johnson | first3 = AL | authorlink3 = Anthony Johnson | last4 = Potts | first4 = L | authorlink4 = Laura Potts | last5 = Walwyn | first5 = R | authorlink5 = Rebecca Walwyn | last6 = DeCesare | first6 = JC | authorlink6 = Julia DeCesare | last7 = Baber | first7 = HL | authorlink7 = Hannah Baber | last8 =Burgess | first8 = M | authorlink8 = Mary Burgess | last9 = Clark | first9 = LV | authorlink9 = Lucy Clark | last10 = Cox | first10 = DL | authorlink10 = Diane Cox | last11 =  Bavinton | first11 = J | authorlink11 = Jessica Bavinton | last12 =  Angus | first12 = BJ | authorlink12 = Brian Angus | last13 =  Murphy | first13 = G | authorlink13 = Gabrielle Murphy | last14 = Murphy | first14 = M | authorlink14 = Maurice Murphy | last15 =  O'Dowd | first15 = H | authorlink15 = Hazel O'Dowd | last16 = Wilks | first16 = D | authorlink16 = David Wilks | last17 =  McCrone | first17 = P | authorlink17 = Paul McCrone | last18 =  Chalder | first18 = T | authorlink18 = Trudie Chalder | last19 =  Sharpe | first19 = M | authorlink19 = Michael Sharpe | last20 = The PACE Trial Management Group | authorlink20 = PACE Trial Management Group| title = Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial| journal = The Lancet | volume = 377 | issue = 9768 | pages = 823–836 | date = March 5, 2011 | pmid = 21334061| doi= 10.1016/S0140-6736(11)60096-2| url = http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/}}</ref><ref name="FirstTierTribunal2015">{{Cite news | title = First-tier tribunal: Information Rights Appeal EA/2015/0269. | url = https://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF | page = 40 | last = Kennedy | first = Brian | last2 = Stephenson | first2 = Darryl | last3 = Watson | first3 = Nigel|quote=The evidence of <nowiki>[expert witness]</nowiki> Professor Anderson that third parties could not identify participants from the information alone and that, when pressed, he said that the chance of an "activist" being able to discover information that would lead to individual identification was remote, it was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder. The identity of those questioning the research, who had signed an open letter or supported it, was impressive.}}</ref> The NIH referred to a 2011 UK newspaper interview of Simon Wessely, but this had been known to be a baseless allegation by 2015, when it was established that no evidence of death threats or violent threats could be provided.<ref name="FirstTierTribunal2015" />


During the criticism of the PACE trial by patient groups the PACE trial psychiatrists had publicised that they were receiving death threats and harassment, in particular Professor Sir Simon Wessely. The PACE trial investigators and Professor Simon Wessely have publicly claimed they have been harassed.<ref name="Guardian20110821" /><ref name="paceWessely20110827" /><ref name="paceWessely20110729" /><ref name="ZimmerC20110821" /><ref name="ScienceMag20110906" /><ref name="Telegraph20110729" /><ref name="StuffNon20121117" /> <ref name="BBCUK20110721" /> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called ''Dangers of research into chronic fatigue syndrome''.<ref name="Hawkes2011" /> ''The Times'' article was titled [http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ 'Doctor’s hate mail is sent by the people he tried to cure'] <ref name="paceWessely20110806" />An article was also published in the ''Sunday Times'' magazine with Simon Wessely repeating the death threats narrative, this time with an artist's impression of a death threat note on the cover of the section, although no note was received (only an "unpleasant phonecall).<ref name="SunTimesUK20130505" /> One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.<ref name="Telegraph20120928" />  
During the criticism of the PACE trial by patient groups the PACE trial psychiatrists had publicised that they were receiving death threats and harassment, in particular Professor Sir Simon Wessely. The PACE trial investigators and Professor Simon Wessely have publicly claimed they have been harassed.<ref name="Guardian20110821">{{cite news | last1 = Guardian | last2 = Robin McKie| title = Chronic fatigue syndrome researchers face death threats from militants| date =Aug 21, 2011| url= http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis}}</ref><ref name="paceWessely20110827">{{cite news | last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely| title = Mind the gap - It’s time to stop separating psychiatry and neurology| publisher = Spectator | date = Aug 27, 2011| url= http://www.spectator.co.uk/2011/08/mind-the-gap-3/}}</ref><ref name="paceWessely20110806">{{cite news | last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely | last2 = Marsh | first2 = Stefanie | authorlink2 = | title = Interview with Professor Simon Wessely| publisher = The Times| date = August 6, 2011| url = http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece| archive-url= http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ | archive-date = 6 Aug 2011}}</ref><ref name="paceWessely20110729">{{Cite web | last1 = Wessely | first1 = Simon | authorlink1 = Simon Wessely| title = Malicious' harassment of ME researchers| publisher = BBC - Today | date = Jul 29, 2011| url=http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm}}</ref><ref name="ZimmerC20110821">{{Cite web| last1 = Zimmer | first1 = Carl | title = Chronic Fatigue Syndrome: Death threats for scientists?| publisher= Discover Magazine | date = Aug 21, 2011| url= http://blogs.discovermagazine.com/loom/2011/08/21/chronic-fatigue-syndrome-death-threats-for-scientists/ }}</ref><ref name="ScienceMag20110906">{{Cite web | last1 = Lowe | first1 = Derek | authorlink1 =| title = Chronic Fatigue: Enough Energy Left for Death Threats, Anyway| publisher = Science Translational Medicine Blog| date = Sep 6, 2011| url = http://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway }}</ref><ref name="ScienceMag20151027">{{citation | last1 = Cohen | first1 = Jon | authorlink1 = | title = Criticism mounts of a long-controversial chronic fatigue study| publisher= Science Magazine | date = Oct 27, 2015 | url= http://www.sciencemag.org/news/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study}}</ref><ref name="Telegraph20110729">{{Cite web| title = ME researchers 'receive death threats from sufferers' | date = Jul 29, 2011| url=http://www.telegraph.co.uk/news/health/news/8669893/ME-researchers-receive-death-threats-from-sufferers.html |publisher =The Telegraph}}</ref><ref name="BBCUK20110721">{{cite web| publisher = BBC News | last = Fielden | first = Tom| title = 'Torrent of abuse' hindering ME research| date = Jul 21, 2011| url= http://www.bbc.co.uk/news/science-environment-14326514}}</ref> A feature article in the BMJ (read by most UK doctors) was published in June 2011 called ''Dangers of research into chronic fatigue syndrome''.<ref name="Hawkes2011">{{citation | last1 = Hawkes | first1 = Nigel | title = Dangers of research into chronic fatigue syndrome| journal = The BMJ | date = 22 Jul 2011| url = http://www.bmj.com/content/342/bmj.d3780| doi= 10.1136/bmj.d3780 }}</ref> ''The Times'' article was titled ''Doctor’s hate mail is sent by the people he tried to cure''.<ref name="paceWessely20110806" /> An article was also published in the ''Sunday Times'' magazine with Simon Wessely repeating the death threats narrative, this time with an artist's impression of a death threat note on the cover of the section, although no such note was received (only an "unpleasant" phonecall).<ref name="SunTimesUK20130505">{{Cite news |  publisher= The Sunday Times| title = This man faced death threats and abuse. His crime? He suggested that ME was a mental illness| date = May 5, 2013 | url = http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece }}</ref> In 2012, an article headline stated ''It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade''.<ref name="Telegraph20120928">{{citation | last1 = The Telegraph | title = It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade | date = 28 Sep 2012 | url= http://www.meassociation.org.uk/2012/10/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade-daily-telegraph-blogs-28-september-2012/}}</ref>  


However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts" /> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318" /> and who have dismissed several as "vexatious":<ref name="FOI20151211JC" /><ref name="FOI20151101AS" /><ref name="FOI20150629GM-c" /> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318" />
However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”<ref name="TymesTrust2014bts">{{Cite web | last1 = Tymes Trust | first1 = | authorlink1 = Tymes Trust| title = Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)| date = Aug 2014| url= https://www.dropbox.com/s/92m09l9tq55pihh/Behind%20the%20Scenes%20-%20Research%20Collaborative.pdf?dl=0 }}</ref> This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data<ref name="FOI20150318">{{citation | last1 = Information Commissioner's Office| title = FOI Decision Notice: to QMUL| date = Mar 18, 2015 | url= https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf }}</ref> and who have dismissed several as "vexatious":<ref name="FOI20150629GM-c">{{citation | last1 = McPhee | first1 = Graham | authorlink1 = Graham McPhee | title = FOI Request: Fitness data for PACE trial | date = 28 Jul 2015 | url= https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451 }}</ref><ref name="FOI20151101AS">{{citation | last1 = Sheridan | first1 = Anna | authorlink1 = | url= https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new | title = FOI Request: Raw 6min walking test data after treatment | date = Nov 1, 2015}}</ref><ref name="FOI20151211JC">{{citation | last1 = Kings College London| title = FOI Request: Response from Kings College London to James Coyne | date = Dec 11, 2015 | url= https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf}}</ref><ref name="FOI20160309AS">{{citation | last1 = Information Commissioner's Office, UK| title = FOI Decision Notice: to QMUL| date = Mar 9, 2016 | url= https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf }}</ref> the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”<ref name="FOI20150318" />


The criticisms of the trial's methodology and analyses by patients and others has been referred to by the investigators - and The Lancet - as part of a campaign to undermine the the study. In an editorial comment that accompanied letters criticising the trial, The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd" /> In an interview on Australian national radio shortly after publication, Dr Richard Horton, The Lancet’s editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio" /> <ref name="pace20110418radio-archive" />
The scientific criticisms of the PACE trial were referred to by the investigators - and The Lancet - as part of a "campaign" to undermine the the study. An editorial comment in the prestigious journal ''The Lancet'' described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.<ref name="pace2011LancetEd">{{citation | last1 = The Lancet| title = Editorial: Patients' power and PACE| journal = The Lancet | date = May 17, 2011 | doi= 10.1016/S0140-6736(11)60696-X | url= http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext }}</ref> In an interview on Australian national radio Dr Richard Horton, The Lancet's editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.<ref name="pace20110418radio">{{Citation | last1 = Swan | first1 = Norman | authorlink1 =| last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe | last3 = Horton | first3 = Richard | authorlink3 = Richard Horton| title = Health Report - Comparison of treatments for chronic fatigue syndrome - the PACE trial| publisher= ABC Radio National (Australia) - Health Report | date = Apr 18, 2011| url= http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296#transcript | url-status=dead| archive-date = 18 Apr 2011 | archive-url = https://web.archive.org/web/20110423065733/http://mpegmedia.abc.net.au/rn/podcast/2011/04/hrt_20110418_0830.mp3}}</ref>


But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including [[Angela Kennedy]].<ref name="KennedyAng20121119" />
The PACE trial authors used claims of "death threats" and "harassment" among their reasons for refusing to provide anonymised data to many individuals and also refused to accept the UK Information Commissioners Office Tribunal order to release the full PACE trial data in 2015. During the appeal to the Tribunal an articlewas published by their associates in ''Nature'' in which they bizarrely described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125">{{Cite web| last1 = Lewandowsky | first1 = Stephan | authorlink1 = | last2 = Bishop | first2 = Dorothy | authorlink2 = | title = Research integrity: Don't let transparency damage science| publisher= Nature News| date = Jan 25, 2016| url = http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219}}</ref><ref name="Lewandowsky20160204">{{Cite news | last1 = Lewandowsky | first1 = Stephan | authorlink1 = | title = Most Christians are definitely not terrorists| website= Shaping Tomorrows World (blogs)| date = 4 Feb 2016| url = http://www.shapingtomorrowsworld.org/lewandowskycfs.html| archive-url = https://web.archive.org/web/20170921192242/http://www.shapingtomorrowsworld.org:80/lewandowskycfs.html| archive-date = Sep 21, 2017}}</ref><ref name="NYT20110218">{{Cite news
| publisher = New York Times| date = Feb 17, 2011| title = Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds| url=http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=0}}</ref>


The PACE trial authors used "death threats" and "harassment" among their reasons for refusing to provide anonymised data to many individuals and also refused to accept the Information Commissioners Office decision for QMUL to release the data in 2015 (see Release of Data/Information Tribunal below). During the PACE trial authors appeal to the Tribunal an article  was published during this period by their associates in Nature in which they bizarrely in [[projection]] described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.<ref name="Lewandowsky20160125" /><ref name="Lewandowsky20160204" />  
{{Quote frame|text=Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.<ref name="Tuller20160201" /<ref name="MEAction20160201victim">{{Cite web
| publisher = #MEAction | authorlink1 = #MEAction | title = Tuller: PACE authors "wrapping themselves in victimhood"| date = Feb 1, 2016| url= http://www.meaction.net/2016/02/01/tuller-pace-authors-wrapping-themselves-in-victimhood/}}</ref> | author = [[David Tuller]] | date = Feb 1, 2016}}


{{Quote frame|text=Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.<ref name="Tuller20160201" /><ref name="MEAction20160201victim" />|author=[[David Tuller]]|date=Feb 1, 2016}}
====Science Media Centre involvement ====
The [[Science Media Centre]] (SMC), which Simon Wessely is a director of, was found to have orchestrated and publicised the false narrative in2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP" /><ref name="SMCUK201302ETE">{{Cite web | last1 = Science Media Centre | authorlink1 = Science Media Centre | last2 = Blithell | first2 = Claire | authorlink2 = | title =  Supporting experts targeted by extremists
| publisher = Science Media Centre | issue = Review of First Three Years in Mental Health Research| page =10 | date = Feb 2013 | url= http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf | archive-url = https://web.archive.org/web/20160418232134/http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf | archive-date =Apr 18, 2016}}</ref> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn For Those Suffering From Chronic Fatigue, Victim-Blaming Is Rampant] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional gaslighting when patients were question the scientific validity of the trial andto stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the ''Politics of Stigma'' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512">{{Cite web| last1 = Hale | first1 = Catherine| authorlink1 = Catherine Hale | title = The politics of stigma with ME/CFS
| website= Catherine Hale (blog) | date = Dec 17, 2015 | url= http://www.catherinehale.net/2015/12/the-politics-of-stigma-with-mecfs.html }}</ref>


====Science Media Centre involvement ====
Peter Tatchell, a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008">{{Cite web | last1 = MEMilitant | title = RC Psych previously smeared patients - Will this change?
The [[Science Media Centre]] (SMC), which Simon Wessely is a director of, was found to have orchestrated and publicised the false narrative in  2011 in the UK media about extremists harassing researchers.<ref name="SMCUK201110TOP" /><ref name="SMCUK201302ETE" /> An article in the Establishment in May 2016, [https://theestablishment.co/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers] summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional [[gaslighting]] when patients were question the scientific validity of the trial and  to stop access to data requests from the PACE trial by framing them as harassment and abuse. [[Catherine Hale]] has written about the 'Politics of Stigma' created for ME sufferers by the PACE trial authors.<ref name="HaleC201512" />
| publisher= Twitter| date = Oct 8, 2017| url = https://twitter.com/MEMilitant1/status/916678145696325632| archive-url= https://web.archive.org/web/20180328062946/https://twitter.com/MEMilitant1/status/916678145696325632| archive-date = Mar 28, 2018}}</ref><ref name="TatchellP20160921">{{Cite web| last1 = Tatchell | first1 = Peter| authorlink1 = | title = Isaac Marks - Lessons not Learnt
Peter Tatchell, a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.<ref name="MEMilitant20171008" /><ref name="TatchellP20160921" /><ref name="TatchellP20160923" /> Ethics experts [[Charlotte Blease]] and [[Diane O'Leary]] have investigated ethics and injustice in the behavior of some researchers in the ME/CFS field and the effects of government and institutional actions on patients.
| publisher= Twitter | date = Sep 21, 2016 | url= https://twitter.com/PeterTatchell/status/778256247300775936}}</ref>
<ref name="TatchellP20160923">{{Cite web | last1 = Tatchell | first1 = Peter | authorlink1 = | title = Worrying how the DWP treats disabled people| publisher= Twitter| date = Sep 23, 2016 | url= https://twitter.com/PeterTatchell/status/778981017768058881}}</ref>
<ref name="SMCUK20131031">{{Cite web| last1 = Science Media Centre | authorlink1 = Science Media Centre | last2 = Fox | first2 = Fiona | authorlink2 = | title = SMC - malicious use of FOI against researchers
| publisher= Science Media Centre | issue = (email)| date = Oct 31, 2013| url= https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large}}</ref> Ethics experts [[Charlotte Blease]] and [[Diane O'Leary]] have investigated ethics and injustice in the behavior of some researchers in the ME/CFS field and the effects of government and institutional actions on patients.


====Esther Crawley ====
====Esther Crawley ====
Another British researcher, Prof. [[Esther Crawley]], claimed to have received many threats including death threats and serious harassment as a result of her ME/CFS research, which again promoted the use of the [[biopsychosocial model]] and the treatments used in the [[PACE trial]] but on children, and the use of the pseudoscientific [[Lightning Process]].
Another British researcher, Prof. [[Esther Crawley]], claimed to have received many threats including death threats and serious harassment as a result of her ME/CFS research, which again promoted the use of the [[biopsychosocial model]] and the treatments used in the [[PACE trial]] but on children, and the use of the pseudoscientific [[Lightning Process]].<ref name="deaththreats">{{Cite web |url = http://www.meassociation.org.uk/2011/07/death-threats-saga-transcript-of-discussion-on-bbc-radio4-today-programme-29-july-2011/ | date = Jul 29, 2011 | title = Death threats saga - transcript of discussion on BBC radio 4 today programme 29 July 2011 | last = ME Association | authorlink = ME Association}}</ref> but has not provide any evidence or details in support of her claim. After a Freedom of Information Act request by the [[Tymes Trust|Young ME Sufferers Trust]], a British patient charity for children with ME, was upheld, the University of Bristol stated it had "no record" of such threats or harassment.<ref name="vadamagazine">{{Cite web | url = https://vadamagazine.com/news/esther-crawley-claims-harassment-university-no-record | title = Esther Crawley claims harassment, university has no record | last = Lowe | first = Adam | author-link = | date = | website = VADA magazine|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2021-04-07}}</ref><ref name="TTnoharass" />
<ref name="deaththreats">{{Cite web |url =http://www.meassociation.org.uk/2011/07/death-threats-saga-transcript-of-discussion-on-bbc-radio4-today-programme-29-july-2011/|date=Jul 29, 2011|title=Death threats saga - transcript of discussion on BBC radio 4 today programme 29 July 2011|last=ME Association |authorlink=ME Association}}</ref> but has not provide any evidence or details in support of her claim. After a Freedom of Information Act request by the [[Tymes Trust|Young ME Sufferers Trust]], a British patient charity for children with ME, was upheld, the University of Bristol stated it had "no record" of such threats or harassment.<ref name="vadamagazine">{{Cite web|url=https://vadamagazine.com/news/esther-crawley-claims-harassment-university-no-record|title=Esther Crawley claims harassment, university has no record|last=Lowe|first=Adam|authorlink=|last2=|first2=|authorlink2=|date=|website=vada magazine|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2021-04-07}}</ref><ref name="TTnoharass" />


{{Quote frame|text=We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015."<ref name="TTnoharass">{{Cite web|url =http://www.tymestrust.org/pdfs/noharassmentbristol.pdf|last=The Young ME Sufferers Trust|title=No harassment at Bristol University|author-link=Tymes Trust}}</ref>|author=University of Bristol}}
{{Quote frame|text=We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015."<ref name="TTnoharass">{{Cite web|url = http://www.tymestrust.org/pdfs/noharassmentbristol.pdf | last = The Young ME Sufferers Trust | title = No harassment at Bristol University | authorlink = Tymes Trust}}</ref> | author = University of Bristol}}


An article published by VADA magazine examined a number of alleged claims of harassment and threats and that they had been rejected by the courts in the [[PACE trial]] tribunal, plus the claims of threats  
An article published by VADA magazine examined a number of alleged claims of harassment and threats and that they had been rejected by the courts in the [[PACE trial]] tribunal, plus the claims of threats repeated by Crawley in a number of live talks, which it found were false as it transpired it was actually an artist's illustration used on the cover of a magazine article.<ref name="vadamagazine" /> Therefore, there was no evidence of any harassment despite the campaign in the media and science conferences.<ref name="TTnoharass" />
repeated by Crawley in a number of live talks, which it found were false as it transpired it was actually an artist's illustration used on the cover of a magazine article.<ref name="vadamagazine" /> Therefore, there was no evidence of any harassment despite the campaign in the media and science conferences.<ref name="TTnoharass" />


Subsequently the University of Bristol published a confusing statement on their website and stated that it was aware "Professor Crawley in particular has experienced significant harassment and personal abuse over several years". This was inconsistent with the actual official FOI response. It explained that "The University does not have a process for 'official recording' of harassment by third parties of our members of staff hence the response to this FOI request" [[Voices from the Shadows]] commented on the controversy in their article [http://voicesfromtheshadowsfilm.co.uk/2017/bristol-university-both-denies-and-supports-prof-crawley-in-her-career-enhancing-heroic-victim-narrative/ 'Bristol University both denies and supports Prof Crawley in her career enhancing “heroic victim” narrative']. They stated of the inconsistency "However, this is seriously at odds with their website, which now echoes the accusations Prof Esther Crawley has been making very publicly at several lectures this year" and "[i]f this really is true, then the University has given a fraudulent response to the Freedom of Information requests."  
Subsequently the University of Bristol published a confusing statement on their website and stated that it was aware "Professor Crawley in particular has experienced significant harassment and personal abuse over several years". This was inconsistent with the actual official FOI response. It explained that "The University does not have a process for 'official recording' of harassment by third parties of our members of staff hence the response to this FOI request" [[Voices from the Shadows]] commented on the controversy in their article [http://voicesfromtheshadowsfilm.co.uk/2017/bristol-university-both-denies-and-supports-prof-crawley-in-her-career-enhancing-heroic-victim-narrative/ 'Bristol University both denies and supports Prof Crawley in her career enhancing “heroic victim” narrative'].<ref name="VoicesFrom">[http://voicesfromtheshadowsfilm.co.uk/2017/bristol-university-both-denies-and-supports-prof-crawley-in-her-career-enhancing-heroic-victim-narrative/ 'Bristol University both denies and supports Prof Crawley in her career enhancing “heroic victim” narrative']</ref> They stated of the inconsistency "However, this is seriously at odds with their website, which now echoes the accusations Prof Esther Crawley has been making very publicly at several lectures this year" and "[i]f this really is true, then the University has given a fraudulent response to the Freedom of Information requests."<ref name="VoicesFrom" />
{{See also|Esther Crawley}}
{{See also|Esther Crawley}}


====No evidence of police involvement ====
====No evidence of police involvement ====
No evidence of anyone with ME/CFS in relation to these matters being charged by the police/law enforcement or convicted in the Courts with harassment and death threats has come to light, despite a number of [[ME activists and advocates|ME advocates]] attempting to find evidence, including filing Freedom of Information Act requests to public bodies.<ref name="Nodeaththreat20120406" /><ref name="warringfactions">{{Cite web|url=https://valerieeliotsmith.com/2019/01/14/changing-the-narrative-2-warring-factions-divide-rule-and-death-threats/|title=Changing the narrative #2: warring factions, divide & rule and death threats|date=2019-01-14|website=valerieeliotsmith|language=en|access-date=2019-08-14}}</ref><ref name="warringfactions" /><ref name="FOIA138299">{{Cite web|url=https://www.whatdotheyknow.com/request/138299/response/341512/attach/html/2/Response%20Letter.pdf.html|title=Freedom of information act request 138299, response 341512|last=King's College London|first=|authorlink=King's College London|last2=|first2=|authorlink2=|date=Dec 12, 2012|website=www.whatdotheyknow.com|archive-url=|archive-date=|url-status=|access-date=2019-03-22}}</ref><ref name="FOIA138299" /><ref name="FOI370916">{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|last2=|first2=|authorlink2=|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref>
No evidence of anyone with ME/CFS in relation to these matters being charged by the police/law enforcement or convicted in the Courts with harassment and death threats has come to light, despite a number of [[ME activists and advocates|ME advocates]] attempting to find evidence, including filing Freedom of Information Act requests to public bodies.<ref name="Nodeaththreat20120406" /><ref name="warringfactions">{{Cite web | url = https://valerieeliotsmith.com/2019/01/14/changing-the-narrative-2-warring-factions-divide-rule-and-death-threats/ | title = Changing the narrative #2: warring factions, divide & rule and death threats | date = 2019-01-14 | website = valerieeliotsmith|language=en|access-date=2019-08-14 | last = Eliot-Smith | first = Valerie | authorlink=Valerie Eliot Smith|archive-url=|archive-date=|url-status=}}</ref><ref name="warringfactions" /><ref name="FOIA138299">{{Cite web | url = https://www.whatdotheyknow.com/request/138299/response/341512/attach/html/2/Response%20Letter.pdf.html | title = Freedom of information act request 138299, response 341512 | last = King's College London | first = | authorlink = King's College London | date = Dec 12, 2012 | website = whatdotheyknow.com|archive-url=|archive-date=|url-status=|access-date=2019-03-22}}</ref><ref name="FOI370916">{{Cite web | url = https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf | title=Freedom of Information Act request 370916, response 921879 | last = King's College London | first = | authorlink = King's College London | date = Jan 17, 2017 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref>
{{See also|PACE trial}}
{{See also|PACE trial}}


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=== Keith Geraghty ===
=== Keith Geraghty ===
[[Keith Geraghty]]: "...after I published articles that were critical of the PACE trial, two of the [[PACE Trial Management Group|PACE authors]] [[Peter White|W]]&[[Michael Sharpe|S]] lodged complaints about me and my work to my host University. Emails and phone calls to ones bosses is very intimidating."<ref name=":3">{{Cite web|url=https://twitter.com/keithgeraghty/status/1098156393159376896|title=Dr Keith Geraghty on Twitter|last=Geraghty|first=Dr Keith|date=2019-02-20|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|quote=For the record this morning, after I published articles that were  critical of the PACE trial, two of the PACE authors W&S lodged  complaints about me and my work to my host University. Emails and phone  calls to ones bosses is very intimidating.|publisher=@keithgeraghty|at=1:44 AM}}</ref> — "... within weeks [of requesting access to PACE trial data], a complaint was made to my home institution, the University of Manchester - from Prof. [[Peter White]], stating I was acting in a highly unprofessional manner."<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/petition-opposing-mega.47466/|title=Petition: Opposing MEGA|website=Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-02-20}}</ref>
[[Keith Geraghty]]'s publication of ''‘PACE-Gate’: When clinical trial evidence meets open data access'' in the [[Journal of Health Psychology, Special Issue: The PACE Trial|Journal of Health Psychology's special issue about the PACE trial]], which PACE trial principle investigators had unsuccessfully failed to block publication of, resulted in them complaining to journal editor [[David Marks]], demanding that the article should be amended to disclose information about Dr Geraghty's health: that he was diagnosed with [[chronic fatigue syndrome]], and claiming that this was evidence of a "conflict of interest", and also demanding a partial retraction of "claims and language" that offended them.<ref name="PACEgate">{{Cite journal | last = Geraghty | first = Keith J | author-link = Keith Geraghty | date = Aug 2017 | title = ‘PACE-Gate’: When clinical trial evidence meets open data access | url = http://journals.sagepub.com/doi/10.1177/1359105316675213|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1106–1112|doi=10.1177/1359105316675213|issn=1359-1053|pmc=|pmid=|access-date=|quote=|via=}}</ref><ref name="Privilege" /> This request was refused.<br />
 
Keith Geraghty: "...after I published articles that were critical of the PACE trial, two of the [[PACE Trial Management Group|PACE authors,]] [[Peter White|White]] and [[Michael Sharpe|Sharpe,]] lodged complaints about me and my work to my host University. Emails and phone calls to ones bosses is very intimidating."<ref name="GeraghtyTweet">{{Cite web | url = https://twitter.com/keithgeraghty/status/1098156393159376896 | title = Dr Keith Geraghty on Twitter | last = Geraghty | first = Dr Keith | date = 2019-02-20 | website = Twitter|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|quote=For the record this morning, after I published articles that werecritical of the PACE trial, two of the PACE authors W&S lodgedcomplaints about me and my work to my host University. Emails and phonecalls to ones bosses is very intimidating.|publisher=@keithgeraghty|at=1:44 AM}}</ref> —"... within weeks [of requesting access to PACE trial data], a complaint was made to my home institution, the University of Manchester - from Prof. [[Peter White]], stating I was acting in a highly unprofessional manner."<ref>{{Cite web | url = https://forums.phoenixrising.me/threads/petition-opposing-mega.47466/ | title = Petition: Opposing MEGA | website = Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-02-20}}</ref>


=== Emma Reinhold ===
=== Emma Reinhold ===
Dr [[Emma Reinhold]]: "I tweeted that I hoped PACE would be discredited and tagged [[Ben Goldacre]], not knowing his connection with [[Simon Wessely]]. Within 3 days Simon Wessely followed me on Twitter. [[Clare Gerada|His wife]] sent me a facebook friend request and the [[Royal College of General Practitioners|RCGP]] said they had received 'complaints' and were considering cancelling the [https://www.ehlers-danlos.org/news/spotlight/ EDS Spotlight project] (which I had just been appointed to run but had not received a contract at that stage) to produce the [https://www.rcgp.org.uk/eds EDS toolkit] for GPs. We were told by RCGP we couldn't mention [[fatigue]] in the context of [[Ehlers-Danlos syndrome|EDS]]. We refused to comply as this is contrary to the evidence."<ref name=":5">{{Cite web|url=https://twitter.com/DrEReinhold/status/1098233146015973377|last=Reinhold|first=Emma|date=2019-02-20|website=Twitter|language=en|access-date=2019-02-20|title=Dr. E Reinhold|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|publisher=@DrEReinhold|quote=I tweeted that I hoped PACE would be discredited and tagged ben goldacre, not knowing his connection with SW. Within 3 days SW followed me on Twitter. His wife sent me a FB friend request and the RCGP said they had received 'complaints' and were considering cancelling the...—... EDS Spotlight project (which I had just been appointed to run but had not received a contract at that stage) to produce the EDS toolkit for GPs. We were told by RCGP we couldn't mention fatigue in the context of EDS. We refused to comply as this is contrary to the evidence.}}</ref>
Dr [[Emma Reinhold]]: "I tweeted that I hoped PACE would be discredited and tagged [[Ben Goldacre]], not knowing his connection with [[Simon Wessely]]. Within 3 days Simon Wessely followed me on Twitter. [[Clare Gerada|His wife]] sent me a facebook friend request and the [[Royal College of General Practitioners|RCGP]] said they had received 'complaints' and were considering cancelling the [https://www.ehlers-danlos.org/news/spotlight/ EDS Spotlight project] (which I had just been appointed to run but had not received a contract at that stage) to produce the [https://gptoolkit.ehlers-danlos.org/ EDS toolkit] for GPs. We were told by RCGP we couldn't mention [[fatigue]] in the context of [[Ehlers-Danlos syndrome|EDS]].We refused to comply as this is contrary to the evidence."<ref name="Reinhold">{{Cite web | url = https://twitter.com/DrEReinhold/status/1098233146015973377 | last = Reinhold | first = Emma | date = 2019-02-20 | website = Twitter|language=en|access-date=2019-02-20 | title = Dr. E Reinhold | authorlink=|archive-url=|archive-date=|url-status=|publisher=@DrEReinhold|quote=I tweeted that I hoped PACE would be discredited and tagged ben goldacre, not knowing his connection with SW. Within 3 days SW followed me on Twitter. His wife sent me a FB friend request and the RCGP said they had received 'complaints' and were considering cancelling the...—... EDS Spotlight project (which I had just been appointed to run but had not received a contract at that stage) to produce the EDS toolkit for GPs. We were told by RCGP we couldn't mention fatigue in the context of EDS.We refused to comply as this is contrary to the evidence.}}</ref>


=== Jonathan Edwards ===
=== Jonathan Edwards ===
According to Professor [[Jonathan Edwards]] "If you criticize PACE in the [[United Kingdom|UK]], there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer."<ref name=":6">{{Cite web|url=https://twitter.com/MECFSNews/status/897756698303188992|title=ME/CFS News Quotes Jonathan Edwards on Twitter|last=Edwards|first=Jonathan|date=2017-08-16|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|quote=Prof. Edwards: if you criticize the #pacetrial in the UK you risk your job.|publisher=@MECFSNews|at=2:47 AM}}</ref>
According to Professor [[Jonathan Edwards]] "If you criticize PACE in the [[United Kingdom|UK]], there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer."<ref name="Edwards">{{Cite web | url = https://twitter.com/MECFSNews/status/897756698303188992 | title = ME/CFS News Quotes Jonathan Edwards on Twitter | last = Edwards | first = Jonathan | date = 2017-08-16 | website = Twitter|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|quote=Prof. Edwards: if you criticize the #pacetrial in the UK you risk your job.|publisher=@MECFSNews|at=2:47 AM}}</ref>


=== James Coyne ===
=== James Coyne ===
Professor [[James Coyne]]: "I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it."<ref name=":12" /> "Professor [[Michael Sharpe]] filed a '''<nowiki>@</nowiki>COPE''' complaint concerning [[Journal of Health Psychology|J Health Psych]] allowing me to review his commentary on <nowiki>#</nowiki>'''PACEgate''', citing my request for the PACE data as demonstrating bias and undeclared conflict of interest."<ref name=":12">{{Cite web|url=https://twitter.com/CoyneoftheRealm/status/1097626513565016065|title=Prof. James C. Coyne on Twitter|last=Coyne|first=James C|date=2019-02-18|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|quote=I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it|publisher=@CoyneoftheRealm}}</ref> When Coyne criticized the PACE trial on his blog hosted by [[PLOS ONE]], the PACE authors pressured PLOS ONE to forbid him from writing any further articles on the topic. According to Coyne, when he revealed this to a journalist, PLOS ONE responded by abruptly blocking him from posting altogether.<ref>{{Cite web|url=https://twitter.com/CoyneoftheRealm/status/1098326838701625354|title=James C. Coyne on Twitter|last=Coyne|first=James C.|date=2019-02-20|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|quote=I pushed @plosone to let me reveal that I was not being allowed to post about #PACEtrial. When I hinted this to journalists after 2 years, @PLOSblogs abruptly blocked me from posting altogether. @PLOS caved to #PACE investigators and gave up its lead in #datasharing.|publisher=@CoyneoftheRealm|at=1:01 PM}}</ref><ref name=":7">{{Cite web|url=https://twitter.com/CoyneoftheRealm/status/1098328714163695616|title=James C. Coyne on Twitter|last=Coyne|first=James C. Coyne|date=2019-02-20|website=@CoyneoftheRealm|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|quote=#PACE investigators insisted would be conflict of interest for me to blog about #PACEtrial if my request for data still active. So I was blocked from either posting or revealing prohibition. @PLOSblogs made untrue statement my blog was ending due to inability to monitor COI —I encourage @PLOSONE Senior Editor Joerg Heber @joergheber to correct the record with his verison of events concerning @PLOSblog Mind the Brain.|publisher=@CoyneoftheRealm|at=1:09PM}}</ref>
Professor [[James Coyne]]: "I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it."<ref name=":12" /> "Professor [[Michael Sharpe]] filed a '''<nowiki>@</nowiki>COPE''' complaint concerning [[Journal of Health Psychology|J Health Psych]] allowing me to review his commentary on '''<nowiki>#PACEgate</nowiki>''', citing my request for the PACE data as demonstrating bias and undeclared conflict of interest."<ref name=":12">{{Cite web | url = https://twitter.com/CoyneoftheRealm/status/1097626513565016065 | title = Prof. James C. Coyne on Twitter | last = Coyne | first = James C | date = 2019-02-18 | website = Twitter|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|quote=I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it|publisher=@CoyneoftheRealm}}</ref> When Coyne criticized the PACE trial on his blog hosted by [[PLOS ONE]], the PACE authors pressured PLOS ONE to forbid him from writing any further articles on the topic. According to Coyne, when he revealed this to a journalist, PLOS ONE responded by abruptly blocking him from posting altogether.<ref>{{Cite web | url = https://twitter.com/CoyneoftheRealm/status/1098326838701625354 | title = James C. Coyne on Twitter | last = Coyne | first = James C. | date = 2019-02-20 | website = Twitter|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|quote=I pushed @plosone to let me reveal that I was not being allowed to post about #PACEtrial. When I hinted this to journalists after 2 years, @PLOSblogs abruptly blocked me from posting altogether. @PLOS caved to #PACE investigators and gave up its lead in #datasharing.|publisher=@CoyneoftheRealm|at=1:01 PM}}</ref><ref name="Coyne20190220">{{Cite web | url = https://twitter.com/CoyneoftheRealm/status/1098328714163695616 | title = James C. Coyne on Twitter | last = Coyne | first = James C. Coyne | date = 2019-02-20 | website = @CoyneoftheRealm|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|quote=#PACE investigators insisted would be conflict of interest for me to blog about #PACEtrial if my request for data still active. So I was blocked from either posting or revealing prohibition. @PLOSblogs made untrue statement my blog was ending due to inability to monitor COI —I encourage @PLOSONE Senior Editor Joerg Heber @joergheber to correct the record with his verison of events concerning @PLOSblog Mind the Brain.|publisher=@CoyneoftheRealm|at=1:09PM}}</ref>


=== Caroline Struthers ===
=== Caroline Struthers ===
[[Caroline Struthers]]: "I was intimidated and upset when [[Lillebeth Larun|Larun]] wrote to my boss to complain about me when I posted @[[Julie Rehmeyer|julierehmeyer]]'s article on my personal FB page."<ref name=":8">{{Cite web|url=https://twitter.com/Good_Reports/status/1097888253070491648|title=Caroline Struthers on Twitter |last=Struthers|first=Caroline|date=2019-02-19|website=Twitter|language=en|access-date=2019-02-20|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|publisher=@Good_Reports|quote=What about @cochranecollab 's "duty of care" to its patient advocate contributors? I was intimidated and upset when Larun wrote to my boss to complain about me when I posted @julierehmeyer's article on my personal FB page. Yet Larun, as an author, is being protected by Cochrane.|at=7:58 AM}}</ref> [[Lillebeth Larun]] is author of the [[Cochrane]] review of [[Graded exercise therapy|exercise therapy]] for [[chronic fatigue syndrome]] (CFS). Struthers had posted Rehmeyer's ''Stat'' article ''Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back.''<ref name=":10">{{Cite web|url=https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/|title=How bad science misled chronic fatigue syndrome patients|last=Rehmeyer|first=Julie|authorlink=|last2=|first2=|authorlink2=|date=2016-09-21|website=STAT|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-20}}</ref>
[[Caroline Struthers]]: "I was intimidated and upset when [[Lillebeth Larun|Larun]] wrote to my boss to complain about me when I posted @[[Julie Rehmeyer|julierehmeyer]]'s article on my personal FB page."<ref name="Struthers">{{Cite web | url = https://twitter.com/Good_Reports/status/1097888253070491648 | title = Caroline Struthers on Twitter | last = Struthers | first = Caroline | date = 2019-02-19 | website = Twitter|language=en|access-date=2019-02-20 | authorlink = |archive-url=|archive-date=|url-status=|publisher=@Good_Reports|quote=What about @cochranecollab 's "duty of care" to its patient advocate contributors? I was intimidated and upset when Larun wrote to my boss to complain about me when I posted @julierehmeyer's article on my personal FB page. Yet Larun, as an author, is being protected by Cochrane.|at=7:58 AM}}</ref> [[Lillebeth Larun]] is author of the [[Cochrane]] review of [[Graded exercise therapy|exercise therapy]] for [[chronic fatigue syndrome]] (CFS). Struthers had posted Rehmeyer's ''Stat'' article ''Bad science misled millions with chronic fatigue syndrome. Here's how we fought back.''<ref name="statnews">{{Cite web | url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ | title = How bad science misled chronic fatigue syndrome patients | last = Rehmeyer | first = Julie | authorlink=Julie Rehmeyer | date = 2016-09-21 | website = STAT|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-20}}</ref>


===Carol Monaghan, MP ===
===Carol Monaghan, MP ===
During a [[United Kingdom|UK]] parliamentary debate on [[myalgic encephalomyelitis]] (ME) and the PACE trial, [[Carol Monaghan]] revealed that Professor Sharpe had written to tell her that her behavior was unbecoming of an [[:Category:United Kingdom Members of Parliament|MP]].<ref>{{Cite web|url=https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98|title=Parliamentlive.tv|website=parliamentlive.tv|access-date=2019-02-20}}</ref>
During a [[United Kingdom|UK]] parliamentary debate on [[myalgic encephalomyelitis]] (ME) and the PACE trial, [[Carol Monaghan]] revealed that Professor Sharpe had written to tell her that her behavior was unbecoming of an [[:Category:United Kingdom Members of Parliament|MP]].<ref>{{Cite web | url = https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98 | title = Parliamentlive.tv|website=parliamentlive.tv|access-date=2019-02-20}}</ref>


=== Julie Rehmeyer ===
=== Julie Rehmeyer ===
Professor [[Michael Sharpe|Michael Sharpe]] attempted to obtain a retraction or correction<ref name="TullerRetract20190218">{{Cite web|url=http://www.virology.ws/2019/02/18/trial-by-error-professor-sharpes-retraction-requests/|title=Trial By Error: Professor Sharpe’s Retraction Requests|last=Tuller |first =David |authorlink =David Tuller |website=[[Virology blog]]|access-date=2019-02-20}}</ref> of the article by [[Julie Rehmeyer|Julie Rehmeyer]]<ref name=":10" /> several years after it was published, falsely claiming the article suggested he was involved in "fraudulent research".
Professor [[Michael Sharpe|Michael Sharpe]] attempted to obtain a retraction or correction<ref name="TullerRetract20190218">{{Cite web | url = http://www.virology.ws/2019/02/18/trial-by-error-professor-sharpes-retraction-requests/ | title = Trial By Error: Professor Sharpe’s Retraction Requests | last = Tuller | first =David | authorlink =David Tuller |website=[[Virology blog]]|access-date=2019-02-20}}</ref> of the article by [[Julie Rehmeyer|Julie Rehmeyer]]<ref name="statnews" /> several years after it was published, falsely claiming the article suggested he was involved in "fraudulent research".


===Steven Lubet ===
===Steven Lubet ===
Sharpe also requested the retraction or correction of Professor [[Steven Lubet]]'s article ''How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma''.<ref>{{Cite web|url=http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890|title=How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma|last=Lubet|first=Steven|website=The Conversation|language=en|access-date=2019-02-20}}</ref><ref name="TullerRetract20190218" />
Sharpe also requested the retraction or correction of Professor [[Steven Lubet]]'s article ''How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma''.<ref>{{Cite web | url = http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 | title = How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma | last = Lubet | first = Steven|website=The Conversation|language=en|access-date=2019-02-20}}</ref><ref name="TullerRetract20190218" />


=== Journal of health psychology ===
=== Journal of Health Psychology ===
An attempt was made to block publication of a [[Journal of Health Psychology, Special Issue: The PACE Trial]]<ref>{{Cite web|url=https://journals.sagepub.com/toc/hpqa/22/9|title=Journal of Health Psychology - Volume 22, Number 9, Aug 01, 2017|website=journals.sagepub.com|language=en|access-date=2019-02-20|date=2017-07-31|last=Marks|first=David F|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|pages=1103-1105}}</ref> by claiming that it had not been [[Peer review|peer reviewed]].<ref>{{Cite web|url=https://inews.co.uk/news/health/scientists-furious-row-pace-trial-journal-special-edition/|title=‘You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study|last=Gallagher|first=Paul|authorlink=|last2=|first2=|authorlink2=|date=2017-08-01|website=inews.co.uk|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2019-02-20|quote=There was a last ditch attempt to block publication of the special issue by a powerful but unknown PACE trial advocate… A weaselly coward suggested papers weren’t properly peer reviewed and that the special issue should therefore not be published. That of course was nonsense}}</ref><ref>{{Cite web|url=https://www.coyneoftherealm.com/blogs/news/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled|title=Last ditch attempt to block publication of the Special Issue of the Journal of Health Psychology foiled|last=Coyne|first=James C.|authorlink=James Coyne|last2=|first2=|authorlink2=|date=2017|website=Coyne of the Realm|archive-url=|archive-date=|url-status=dead|access-date=}}</ref>
An attempt was made to block publication of a [[Journal of Health Psychology, Special Issue: The PACE Trial]]<ref>{{Citation | url =https://journals.sagepub.com/toc/hpqa/22/9 | title = Journal of Health Psychology, Special Issue: The PACE Trial|website=SAGE publishing|language=en|access-date=2019-02-20 | date = Aug 2017|volume=22
|issue=9 | last = Marks | first = David F | authorlink = David Marks|archive-url=|archive-date=|url-status=|pages=1103-1105}}</ref> by wrongly claiming that it had not been [[peer review|ed]]<ref name="inewsSpecialIssue">{{Cite web | url = https://inews.co.uk/news/health/scientists-furious-row-pace-trial-journal-special-edition/ | title = ‘You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study | last = Gallagher | first = Paul | authorlink= | date = 2017-08-01 | website = inews.co.uk|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2019-02-20|quote=There was a last ditch attempt to block publication of the special issue by a powerful but unknown PACE trial advocate… A weaselly coward suggested papers weren’t properly peer reviewed and that the special issue should therefore not be published. That of course was nonsense}}</ref><ref>{{Cite web | url = https://www.coyneoftherealm.com/blogs/news/last-ditch-attempt-to-block-publication-of-the-special-issue-of-the-journal-of-health-psychology-foiled | title = Last ditch attempt to block publication of the Special Issue of the Journal of Health Psychology foiled | last = Coyne | first = James C. | authorlink = James Coyne | date = 2017 | website = Coyne of the Realm|archive-url=|archive-date=|url-status=dead|access-date=}}</ref>―while principle PACE trial investigators [[Peter White]], [[Trudie Chalder]] and [[Michael Sharpe]] also requested that their own editorial ''not'' be peer reviewed and not receive replies.<ref name="Privilege">{{Cite web| title =  Asserting privilege: PACE investigators request that their manuscript not be peer reviewed or receive replies | last = Coyne | first = James C. | authorlink = James Coyne | date = 2017-11-07 | website = Coyne of the Realm | url = https://www.coyneoftherealm.com/2017/07/11/asserting-privilege-pace-investigators-request-that-their-manuscript-not-be-peer-reviewed-or-receive-replies/}}</ref>


=== David Tuller ===
=== David Tuller ===
Professor [[Esther Crawley]], who is a proponent of the PACE trial but was not involved in the running of it, has attempted to silence and intimidate [[David Tuller]],<ref>{{Cite web|url=http://www.virology.ws/2017/11/29/trial-by-error-the-crawley-chronicles-continued/|title=Trial By Error: The Crawley Chronicles, Continued|website=[[Virology blog]]|access-date=2019-02-20}}</ref> including referring to "libellous blogs" and "fake anti science" in a professional presentation while showing an image of the [[Virology blog]] he writes on, and incorrectly claiming he has been sent a "Cease and Desist" letter by the University of Bristol.<ref name=":11">{{Cite web|url=http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/|title=Trial By Error, Continued: My Libelous Blogging on Virology Blog|last=Tuller|first=David|authorlink=David Tuller|last2=|first2=|authorlink2=|date=May 3, 2015|website=[[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-28}}</ref><ref>{{Cite web|url=https://twitter.com/keithgeraghty/status/857987810955059200|title=@davidtuller1 blog listed under fake anti science slide - disgraceful|last=Geraghty|first=Keith|authorlink=Keith Geraghty|last2=|first2=|authorlink2=|date=2017-04-28|website=twitter|language=en|archive-url=|archive-date=|url-status=|access-date=2019-02-28}}</ref> When Tuller contacted Professor Crawley asking what statements were incorrect, and offering to change anything that was untrue, she did not respond.<ref name=":11" />
Professor [[Esther Crawley]], who is a proponent of the PACE trial but was not involved in the running of it, has attempted to silence and intimidate [[David Tuller]],<ref>{{Cite web | url = http://www.virology.ws/2017/11/29/trial-by-error-the-crawley-chronicles-continued/ | title = Trial By Error: The Crawley Chronicles, Continued|website=[[Virology blog]]|access-date=2019-02-20}}</ref> including referring to "libellous blogs" and "fake anti science" in a professional presentation while showing an image of the [[Virology blog]] he writes on, and incorrectly claiming he has been sent a "Cease and Desist" letter by the University of Bristol.<ref name="Tuller20170503">{{Cite web | url = http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ | title = Trial By Error, Continued: My Libelous Blogging on Virology Blog | last = Tuller | first = David | authorlink = David Tuller | date = May 3, 2015 | website = [[Virology blog]]|archive-url=|archive-date=|url-status=|access-date=2019-02-28}}</ref><ref>{{Cite web | url = https://twitter.com/keithgeraghty/status/857987810955059200 | title = @davidtuller1 blog listed under fake anti science slide - disgraceful | last = Geraghty | first = Keith | authorlink = Keith Geraghty | date = 2017-04-28 | website = twitter|language=en|archive-url=|archive-date=|url-status=|access-date=2019-02-28}}</ref> When Tuller contacted Professor Crawley asking what statements were incorrect, and offering to change anything that was untrue, she did not respond.<ref name="Tuller20170503" />


=== Countess Margaret of Mar ===
=== Countess Margaret of Mar ===
In 2012, an interview with [[Simon Wessely]] was published by ''The Independent''<ref>{{Cite web|url=http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html|title=ME: bitterest row yet in a long saga|last=Manning|first=Sanchez|authorlink=Sanchez Manning|last2=|first2=|authorlink2=|date=Nov 25, 2012|website=The Independent|language=en|archive-url=|archive-date=|url-status=|access-date=2019-03-01|quote=Professor Wessely has previously come under fire for research he jointly conducted which concluded that cognitive behavioural therapy could be beneficial in treating ME. In August last year he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the findings.}}</ref> which named the [[Margaret of Mar, 31st Countess of Mar|Countess of Mar]] as "an opponent" of Wessely’s, and stated "he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the findings", she responded with an open letter to Simon Wessely<ref name="CountessOfMar4Dec2012" /> denying she had ever harassed him, and describing a catalogue of harassment and rude behavior he had subjected her to. [[Simon Wessely]], whose interview was shortly followed by a letter signed by 27 researchers in support,<ref>{{Cite web|url=http://www.independent.co.uk/voices/letters/ios-letters-emails-online-postings-2-december-2012-8373777.html|title=Letters, emails & online postings|last=White|first=Peter|authorlink=Peter White|last2=Sharpe|first2=Michael|authorlink2=Michael Sharpe|date=Dec 2, 2012|website=The Independent|language=en|archive-url=|archive-date=|url-status=|access-date=2019-03-01|publisher=The Independent on Sunday|quote=So it is with sadness that we read in The Independent on Sunday reports of false allegations made against Simon Wessely - one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Ironically, it was because of accusations like this that Professor Wessely received the award in the first place.|first3=Esther|last3=Crawley|author-link3=Esther Crawley|last4=Holgate|first4=Stephen|author-link4=Stephen Holgate|others=[[Rona Moss-Morris]], [[Charlotte Feinmann]] [[Hugo Critchley]], [[Brian Angus]], [[Steven Reid]], [[Patrick Doherty]], [[Paul Little]], [[Maurice Murphy]], [[Tim Peto]], [[Mansel Aylward]], [[Alastair Miller]], [[Diane Cox]], [[Jonathan Sterne]], [[Margaret May]] [[George Davey-Smith]], [[Jade Thai]], [[Gabrielle Murphy]], [[Hazel O'Dowd]], [[Brian Marien]], [[Selwyn Richards]], [[Alison Wearden]], and [[Trudie Chalder]]}}</ref> replied to the Countess denying the specific harassment she had described. Prof. [[Peter White]] who signed the letter in support of Simon Wessely later apologized.
In 2012, an interview with [[Simon Wessely]] was published by ''The Independent''<ref>{{Cite web | url = http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html | title = ME: bitterest row yet in a long saga | last = Manning | first = Sanchez | authorlink = | date = Nov 25, 2012 | website = The Independent|language=en|archive-url=|archive-date=|url-status=|access-date=2019-03-01|quote=Professor Wessely has previously come under fire for research he jointly conducted which concluded that cognitive behavioural therapy could be beneficial in treating ME. In August last year he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the findings.}}</ref> which named the [[Margaret of Mar, 31st Countess of Mar|Countess of Mar]] as "an opponent" of Wessely’s, and stated "he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the [sic] findings", she responded with an open letter to Simon Wessely<ref name="CountessOfMar4Dec2012" /> denying she had ever harassed him, and describing a catalogue of harassment and rude behavior he had subjected her to. [[Simon Wessely]], whose interview was shortly followed by a letter signed by 27 researchers in support,<ref>{{Cite web | url = http://www.independent.co.uk/voices/letters/ios-letters-emails-online-postings-2-december-2012-8373777.html | title = Letters, emails & online postings | last = White | first = Peter | authorlink = Peter White | last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe | date = Dec 2, 2012 | website = The Independent|language=en|archive-url=|archive-date=|url-status=|access-date=2019-03-01|publisher=The Independent on Sunday|quote=So it is with sadness that we read in The Independent on Sunday reports of false allegations made against Simon Wessely - one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Ironically, it was because of accusations like this that Professor Wessely received the award in the first place. | first3 = Esther | last3 = Crawley | authorlink3 = Esther Crawley | last4 = Holgate | first4 = Stephen | authorlink4 = Stephen Holgate|others=[[Rona Moss-Morris]], [[Charlotte Feinmann]] [[Hugo Critchley]], [[Brian Angus]], [[Steven Reid]], [[Patrick Doherty]], [[Paul Little]], [[Maurice Murphy]], [[Tim Peto]], [[Mansel Aylward]], [[Alastair Miller]], [[Diane Cox]], [[Jonathan Sterne]],[[Margaret May]]<sub>Subscript text</sub>[[George Davey-Smith]], [[Jade Thai]], [[Gabrielle Murphy]], [[Hazel O'Dowd]], [[Brian Marien]], [[Selwyn Richards]], [[Alison Wearden]], and [[Trudie Chalder]]}}</ref> replied to the Countess denying the specific harassment she had described. Prof. [[Peter White]] who signed the letter in support of Simon Wessely later apologized.


==Learn more ==
==Learn more ==
* *2012, [http://www.investinme.org/Article-395a%20Letter%20from%20Lady%20Mar%20to%20SWessel.htm Letter from Countess Mar to Professor Simon Wessely]<ref name="CountessOfMar4Dec2012">{{Cite web|url=http://www.investinme.org/Article-395a%20Letter%20from%20Lady%20Mar%20to%20SWessel.htm|title=Letter from Countess Mar to Simon Wessely|website=[[Invest in ME Research]]|access-date=2018-08-29|date=Dec 4, 2012|last=Margaret of Mar, 31st Countess of Mar|first=|authorlink=Margaret of Mar, 31st Countess of Mar|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=}}</ref>
* *2012, [http://www.investinme.org/Article-395a%20Letter%20from%20Lady%20Mar%20to%20SWessel.htm Letter from Countess Mar to Professor Simon Wessely]<ref name="CountessOfMar4Dec2012">{{Cite web | url = http://www.investinme.org/Article-395a%20Letter%20from%20Lady%20Mar%20to%20SWessel.htm | title = Letter from Countess Mar to Simon Wessely|website=[[Invest in ME Research]]|access-date=2018-08-29 | date = Dec 4, 2012 | last = Margaret of Mar, 31st Countess of Mar | first = | authorlink = Margaret of Mar, 31st Countess of Mar|archive-url=|archive-date=|url-status=}}</ref>


== See also ==
== See also ==
* [[Ethical issues]]
* [[Ethical issues]]
* [[Wessely school]]
* [[Wessely school]]
* [[Journal of Health Psychology, Special Issue: The PACE Trial]]
* [[Journal of Health Psychology, Special Issue: The PACE Trial]]
* [[PACE trial]]
* [[PACE trial]]
* [[Stigma]]
* [[Stigma]]
* [[Wessely school]]


== References ==
== References ==
{{Reflist}}
{{Reflist}}
[[Category:Abuse]]
[[Category:Abuse]]
[[Category:Social issues]]
[[Category:Social issues]]
[[Category:Ethics]]

Latest revision as of 14:06, April 2, 2023

Intimidation and pressure to silence debate has been reported by researchers, clinicians and patients after criticizing the PACE trial, a large randomized trial on behavioral interventions in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This includes emails and phone calls to the critics’ home institution and superiors, demands for a retraction of articles critical of PACE and complaints to the UK's Royal College of General Practitioners (RCGP).[1][2][3][4][5][6]

Background[edit | edit source]

The PACE trial[edit | edit source]

The PACE trial was a large randomized trial to test the efficacy and safety of several behavioral interventions including cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in ME/CFS patients.[7] Since the start of the trial in 2003, PACE has been criticized on methodological grounds.[8][7] Criticism includes invalid selection criteria,[9][10][11] ceiling effects in outcome measurements,[10][12] violation of the declaration of Helsinki regarding Good Clinical Practice,[10][13] and deviation from the trial's protocol without providing sensitivity analyses.[14][15]

Negative portrayal of PACE critics[edit | edit source]

Patients and scientists have requested anonymised data from the PACE trial through Freedom of Information Requests and other means, to compare the reported findings to the original protocol-specified procedures. Several of these requests haveapproved by the Information Commissioner's Office - despite been rejected and labeled “vexatious”[16][17][18][19] by the PACE authors’ academic institutions. 

Richard Horton, editor-in-chief of The Lancet, the scientific journal that published the PACE trial main findings, described critics of PACE as “a fairly small but highly organized, very vocal and very damaging group of individuals who have ... actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”[20]

Critics of the PACE trial have repeatedly been compared to climate change deniers[21][22] and anti-vaccination campaigners.[23] Professor of neurology Malcolm Macleod for example said: "If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”[24]

Patients that were critical of the PACE trial have been targeted by an extended smear campaign that variously portrayed them as violent militants or activists engaging in a campaign of harassment.[2] During the 2015 first tribunal hearing on the release of the PACE trial data, professor Ross Anderson made “wild speculations” about “young men, borderline sociopathic or psychopathic” being attached to PACE trial criticism.[25][26][27]

Authors of a reanalysis of the PACE trial received an abusive review at the British Medical Journal. One of the peer reviewers wrote: "It is about time that they moved on from their obsessive (in the non-psychiatric use of the term) poring over the results of a good (albeit imperfect) randomised controlled trial."[28] The peer reviewer also questioned the diagnosis of some of the authors and their sincerity in criticizing the PACE trial: "Are [the patient authors] absolutely sure that they are writing about syndromes of chronic fatigue? Are they sure they are not simply writing about themselves?"[28]

Scientists and clinicians who expressed concern about the safety of interventions used in the PACE trial were demeaned on social media as "whiners" who "have managed to ensure there is no treatment available for patients with ME."[29] Critics of the PACE trial have been accused of disliking the results[30] and attempting "to find faults with them which would not be raised if they liked the results."[31]

Allegations of death threats and smear campaigns
[edit | edit source]

Shortcut:
  • Death threats

From at least 2011, patients critical of the PACE trial and the biopsychosocial model of ME/CFS have been publicly accused of making death threats against researchers numerous times in both the United Kingdom and the United States.[32][33][34][35][36][37][38][39][40]

National Institutes of Health[edit | edit source]

In the UK, British researcher Professor Myra McClure informed the National Institutes of Health (NIH) that she had received a disturbing phone call: a journalist informed her that ME/CFS patients were planning an armed protest at NIH and CDC. This phone call was never investigated or reported to the police, and an armed protest never materialized.[32] In another article, McClure reported, "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months.”[38] McClure stated she was withdrawing as a reviewer of ME/CFS research grants and NIH appointed a new panel.[32] In 2021, NIH stated that grant review rosters during the 2011-2021 period were blinded because multiple death threats had been made to multiple researchers; however, an FOA request revealed no such threats were reported to NIH beyond beyond the journalist's call to McClure regarding rumors of activist activity.[32]

Simon Wessely and the PACE trial authors[edit | edit source]

Another 2011 claim from a different researcher in the UK was used as evidence that there were "death threats" to multiple researchers, yet the PACE trial Freedom of Information Act Tribunal in 2015 found no death threats, and the only evidence of "harassment" was a single researcher, Prof. Professor Trudie Chalder, being heckled once at a seminar in Norway. Professor Sir Simon Wessely, a center manager for the PACE trial and credited in the research, did not give evidence.[41][42] The NIH referred to a 2011 UK newspaper interview of Simon Wessely, but this had been known to be a baseless allegation by 2015, when it was established that no evidence of death threats or violent threats could be provided.[42]

During the criticism of the PACE trial by patient groups the PACE trial psychiatrists had publicised that they were receiving death threats and harassment, in particular Professor Sir Simon Wessely. The PACE trial investigators and Professor Simon Wessely have publicly claimed they have been harassed.[33][43][44][45][46][47][48][49][50] A feature article in the BMJ (read by most UK doctors) was published in June 2011 called Dangers of research into chronic fatigue syndrome.[51] The Times article was titled Doctor’s hate mail is sent by the people he tried to cure.[44] An article was also published in the Sunday Times magazine with Simon Wessely repeating the death threats narrative, this time with an artist's impression of a death threat note on the cover of the section, although no such note was received (only an "unpleasant" phonecall).[39] In 2012, an article headline stated It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade.[40]

However, the PACE authors and their supporters have been accused of blurring the line between harassment and legitimate criticism of the study. Documentation obtained under the Freedom of Information Act from meetings in 2013 that were attended by some of PACE’s principal investigators include a statement that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests].”[34] This framing of FOIA requests as harassment is widely taken to be a reference to the PACE authors, who have complained about the number of FOI requests that they have received for data[35] and who have dismissed several as "vexatious":[52][53][54][55] the Information Commissioner's Office was told that Professor Peter White “believes that the requests are clearly part of a campaign to discredit the trial” and that “the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”[35]

The scientific criticisms of the PACE trial were referred to by the investigators - and The Lancet - as part of a "campaign" to undermine the the study. An editorial comment in the prestigious journal The Lancet described the trial as “rigorously conducted” and questioned whether the “coordination of the response... has been born... from an active campaign to discredit the research”.[56] In an interview on Australian national radio Dr Richard Horton, The Lancet's editor, described patients who criticised the trial as “a fairly small, but highly organised, very vocal and very damaging group of individuals”.[57]

The PACE trial authors used claims of "death threats" and "harassment" among their reasons for refusing to provide anonymised data to many individuals and also refused to accept the UK Information Commissioners Office Tribunal order to release the full PACE trial data in 2015. During the appeal to the Tribunal an articlewas published by their associates in Nature in which they bizarrely described disabled ME sufferers as “hard-line opponents” of research into chronic fatigue syndrome and compared them with industry lobbyists such as tobacco and climate change denialists.[58][37][59]

Wrapping themselves in victimhood, the [PACE authors] have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data — a tactic that has shielded their work from legitimate and much-needed scrutiny.”[60] — David Tuller

Science Media Centre involvement[edit | edit source]

The Science Media Centre (SMC), which Simon Wessely is a director of, was found to have orchestrated and publicised the false narrative in2011 in the UK media about extremists harassing researchers.[36][61] An article in the Establishment in May 2016, For Those Suffering From Chronic Fatigue, Victim-Blaming Is Rampant summarised the campaign to smear ME sufferers and how these psychiatrists after categorising ME as a psychological over two decades then were able to use institutional gaslighting when patients were question the scientific validity of the trial andto stop access to data requests from the PACE trial by framing them as harassment and abuse. Catherine Hale has written about the Politics of Stigma created for ME sufferers by the PACE trial authors.[62]

Peter Tatchell, a human rights advocate has supported ME sufferers for their human rights against the psychotherapies and the PACE trial and defended them from the smear campaigns by the psychiatrists similar to what he faced in his advocacy in the 1970s.[63][64] [65] [66] Ethics experts Charlotte Blease and Diane O'Leary have investigated ethics and injustice in the behavior of some researchers in the ME/CFS field and the effects of government and institutional actions on patients.

Esther Crawley[edit | edit source]

Another British researcher, Prof. Esther Crawley, claimed to have received many threats including death threats and serious harassment as a result of her ME/CFS research, which again promoted the use of the biopsychosocial model and the treatments used in the PACE trial but on children, and the use of the pseudoscientific Lightning Process.[67] but has not provide any evidence or details in support of her claim. After a Freedom of Information Act request by the Young ME Sufferers Trust, a British patient charity for children with ME, was upheld, the University of Bristol stated it had "no record" of such threats or harassment.[68][69]

We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015."[69] — University of Bristol

An article published by VADA magazine examined a number of alleged claims of harassment and threats and that they had been rejected by the courts in the PACE trial tribunal, plus the claims of threats repeated by Crawley in a number of live talks, which it found were false as it transpired it was actually an artist's illustration used on the cover of a magazine article.[68] Therefore, there was no evidence of any harassment despite the campaign in the media and science conferences.[69]

Subsequently the University of Bristol published a confusing statement on their website and stated that it was aware "Professor Crawley in particular has experienced significant harassment and personal abuse over several years". This was inconsistent with the actual official FOI response. It explained that "The University does not have a process for 'official recording' of harassment by third parties of our members of staff hence the response to this FOI request" Voices from the Shadows commented on the controversy in their article 'Bristol University both denies and supports Prof Crawley in her career enhancing “heroic victim” narrative'.[70] They stated of the inconsistency "However, this is seriously at odds with their website, which now echoes the accusations Prof Esther Crawley has been making very publicly at several lectures this year" and "[i]f this really is true, then the University has given a fraudulent response to the Freedom of Information requests."[70]

No evidence of police involvement[edit | edit source]

No evidence of anyone with ME/CFS in relation to these matters being charged by the police/law enforcement or convicted in the Courts with harassment and death threats has come to light, despite a number of ME advocates attempting to find evidence, including filing Freedom of Information Act requests to public bodies.[32][71][71][72][73]

Testimonials and other examples[edit | edit source]

Keith Geraghty[edit | edit source]

Keith Geraghty's publication of PACE-Gate’: When clinical trial evidence meets open data access in the Journal of Health Psychology's special issue about the PACE trial, which PACE trial principle investigators had unsuccessfully failed to block publication of, resulted in them complaining to journal editor David Marks, demanding that the article should be amended to disclose information about Dr Geraghty's health: that he was diagnosed with chronic fatigue syndrome, and claiming that this was evidence of a "conflict of interest", and also demanding a partial retraction of "claims and language" that offended them.[74][75] This request was refused.

Keith Geraghty: "...after I published articles that were critical of the PACE trial, two of the PACE authors, White and Sharpe, lodged complaints about me and my work to my host University. Emails and phone calls to ones bosses is very intimidating."[1] —"... within weeks [of requesting access to PACE trial data], a complaint was made to my home institution, the University of Manchester - from Prof. Peter White, stating I was acting in a highly unprofessional manner."[76]

Emma Reinhold[edit | edit source]

Dr Emma Reinhold: "I tweeted that I hoped PACE would be discredited and tagged Ben Goldacre, not knowing his connection with Simon Wessely. Within 3 days Simon Wessely followed me on Twitter. His wife sent me a facebook friend request and the RCGP said they had received 'complaints' and were considering cancelling the EDS Spotlight project (which I had just been appointed to run but had not received a contract at that stage) to produce the EDS toolkit for GPs. We were told by RCGP we couldn't mention fatigue in the context of EDS.We refused to comply as this is contrary to the evidence."[3]

Jonathan Edwards[edit | edit source]

According to Professor Jonathan Edwards "If you criticize PACE in the UK, there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer."[4]

James Coyne[edit | edit source]

Professor James Coyne: "I have a better record of quality and quantity of publications than any of the #PACE investigators but they somehow found me unqualified to write or review papers related to the trial. They even challenged my competence to analyze the trial data when I requested it."[77] "Professor Michael Sharpe filed a @COPE complaint concerning J Health Psych allowing me to review his commentary on #PACEgate, citing my request for the PACE data as demonstrating bias and undeclared conflict of interest."[77] When Coyne criticized the PACE trial on his blog hosted by PLOS ONE, the PACE authors pressured PLOS ONE to forbid him from writing any further articles on the topic. According to Coyne, when he revealed this to a journalist, PLOS ONE responded by abruptly blocking him from posting altogether.[78][5]

Caroline Struthers[edit | edit source]

Caroline Struthers: "I was intimidated and upset when Larun wrote to my boss to complain about me when I posted @julierehmeyer's article on my personal FB page."[6] Lillebeth Larun is author of the Cochrane review of exercise therapy for chronic fatigue syndrome (CFS). Struthers had posted Rehmeyer's Stat article Bad science misled millions with chronic fatigue syndrome. Here's how we fought back.[79]

Carol Monaghan, MP[edit | edit source]

During a UK parliamentary debate on myalgic encephalomyelitis (ME) and the PACE trial, Carol Monaghan revealed that Professor Sharpe had written to tell her that her behavior was unbecoming of an MP.[80]

Julie Rehmeyer[edit | edit source]

Professor Michael Sharpe attempted to obtain a retraction or correction[81] of the article by Julie Rehmeyer[79] several years after it was published, falsely claiming the article suggested he was involved in "fraudulent research".

Steven Lubet[edit | edit source]

Sharpe also requested the retraction or correction of Professor Steven Lubet's article How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma.[82][81]

Journal of Health Psychology[edit | edit source]

An attempt was made to block publication of a Journal of Health Psychology, Special Issue: The PACE Trial[83] by wrongly claiming that it had not been ed[84][85]―while principle PACE trial investigators Peter White, Trudie Chalder and Michael Sharpe also requested that their own editorial not be peer reviewed and not receive replies.[75]

David Tuller[edit | edit source]

Professor Esther Crawley, who is a proponent of the PACE trial but was not involved in the running of it, has attempted to silence and intimidate David Tuller,[86] including referring to "libellous blogs" and "fake anti science" in a professional presentation while showing an image of the Virology blog he writes on, and incorrectly claiming he has been sent a "Cease and Desist" letter by the University of Bristol.[87][88] When Tuller contacted Professor Crawley asking what statements were incorrect, and offering to change anything that was untrue, she did not respond.[87]

Countess Margaret of Mar[edit | edit source]

In 2012, an interview with Simon Wessely was published by The Independent[89] which named the Countess of Mar as "an opponent" of Wessely’s, and stated "he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the [sic] findings", she responded with an open letter to Simon Wessely[90] denying she had ever harassed him, and describing a catalogue of harassment and rude behavior he had subjected her to. Simon Wessely, whose interview was shortly followed by a letter signed by 27 researchers in support,[91] replied to the Countess denying the specific harassment she had described. Prof. Peter White who signed the letter in support of Simon Wessely later apologized.

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 Geraghty, Dr Keith (February 20, 2019). "Dr Keith Geraghty on Twitter". Twitter. @keithgeraghty. 1:44 AM. Retrieved February 20, 2019. For the record this morning, after I published articles that werecritical of the PACE trial, two of the PACE authors W&S lodgedcomplaints about me and my work to my host University. Emails and phonecalls to ones bosses is very intimidating.
  2. 2.0 2.1 "Chronic fatigue syndrome, Bristol University, and controversial science". The Bristol Cable. July 7, 2017. Retrieved February 20, 2019. But if there is truth in the criticisms from patients and CFS advocacy groups and charities, the dominance of the ‘extremist’ opponent narrative – the alleged harassment and abuse of researchers into these treatments – is also troubling. While accepting there may be some intemperate opponents, some critics of PACE and the following trials pursuing similar hypotheses, such as FITNET and MAGENTA at Bristol, say researchers are using the ‘militant’ narrative to deflect legitimate criticisms of bad science.
  3. 3.0 3.1 Reinhold, Emma (February 20, 2019). "Dr. E Reinhold". Twitter. @DrEReinhold. Retrieved February 20, 2019. I tweeted that I hoped PACE would be discredited and tagged ben goldacre, not knowing his connection with SW. Within 3 days SW followed me on Twitter. His wife sent me a FB friend request and the RCGP said they had received 'complaints' and were considering cancelling the...—... EDS Spotlight project (which I had just been appointed to run but had not received a contract at that stage) to produce the EDS toolkit for GPs. We were told by RCGP we couldn't mention fatigue in the context of EDS.We refused to comply as this is contrary to the evidence.
  4. 4.0 4.1 Edwards, Jonathan (August 16, 2017). "ME/CFS News Quotes Jonathan Edwards on Twitter". Twitter. @MECFSNews. 2:47 AM. Retrieved February 20, 2019. Prof. Edwards: if you criticize the #pacetrial in the UK you risk your job.
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  78. Coyne, James C. (February 20, 2019). "James C. Coyne on Twitter". Twitter. @CoyneoftheRealm. 1:01 PM. Retrieved February 20, 2019. I pushed @plosone to let me reveal that I was not being allowed to post about #PACEtrial. When I hinted this to journalists after 2 years, @PLOSblogs abruptly blocked me from posting altogether. @PLOS caved to #PACE investigators and gave up its lead in #datasharing.
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  84. Gallagher, Paul (August 1, 2017). "'You're a disgusting old fart neoliberal hypocrite' – scientists in furious row over ME study". inews.co.uk. Retrieved February 20, 2019. There was a last ditch attempt to block publication of the special issue by a powerful but unknown PACE trial advocate… A weaselly coward suggested papers weren’t properly peer reviewed and that the special issue should therefore not be published. That of course was nonsense
  85. Coyne, James C. (2017). "Last ditch attempt to block publication of the Special Issue of the Journal of Health Psychology foiled". Coyne of the Realm.
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  89. Manning, Sanchez (November 25, 2012). "ME: bitterest row yet in a long saga". The Independent. Retrieved March 1, 2019. Professor Wessely has previously come under fire for research he jointly conducted which concluded that cognitive behavioural therapy could be beneficial in treating ME. In August last year he told how he had been harassed, stalked and intimidated by fanatical lobby groups that disputed his the findings.
  90. 90.0 90.1 Margaret of Mar, 31st Countess of Mar (December 4, 2012). "Letter from Countess Mar to Simon Wessely". Invest in ME Research. Retrieved August 29, 2018.
  91. White, Peter; Sharpe, Michael; Crawley, Esther; Holgate, Stephen (December 2, 2012). "Letters, emails & online postings". The Independent. Rona Moss-Morris, Charlotte Feinmann Hugo Critchley, Brian Angus, Steven Reid, Patrick Doherty, Paul Little, Maurice Murphy, Tim Peto, Mansel Aylward, Alastair Miller, Diane Cox, Jonathan Sterne,Margaret MaySubscript textGeorge Davey-Smith, Jade Thai, Gabrielle Murphy, Hazel O'Dowd, Brian Marien, Selwyn Richards, Alison Wearden, and Trudie Chalder. The Independent on Sunday. Retrieved March 1, 2019. So it is with sadness that we read in The Independent on Sunday reports of false allegations made against Simon Wessely - one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Ironically, it was because of accusations like this that Professor Wessely received the award in the first place.