Intimidation and bullying of PACE trial critics

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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]

  • 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.
  5. 5.0 5.1 Coyne, James C. Coyne (February 20, 2019). "James C. Coyne on Twitter". @CoyneoftheRealm. @CoyneoftheRealm. 1:09PM. Retrieved February 20, 2019. #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.
  6. 6.0 6.1 Struthers, Caroline (February 19, 2019). "Caroline Struthers on Twitter". Twitter. @Good_Reports. 7:58 AM. Retrieved February 20, 2019. 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.
  7. 7.0 7.1 Walwyn, Rebecca; DeCesare, Julia C.; Chalder, Trudie; Sharpe, Michael C.; White, PeterD. (December 2007). "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". BMC Neurology. doi:10.1186/1471-2377-7-6/comments. Retrieved February 21, 2019.
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  11. Goudsmit, Ellen; Howes, Sandra (August 2017). "Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment". Journal of Health Psychology. 22 (9): 1159–1167. doi:10.1177/1359105317707216. ISSN 1461-7277. PMID 28805527.
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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.