Intimidation and bullying of PACE trial critics

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).

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. Since the start of the trial in 2003, PACE has been criticized on methodologicalgrounds. Criticism includes invalid selection criteria, ceiling effects in outcome measurements, violation of the declaration of Helsinki regarding Good Clinical Practice, and deviation from the trials protocol without providing sensitivity analyses.

Negative portrayal of PACE critics
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 have approved by the Information Commissioner's Office - despite been rejected and labeled “vexatious”    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.”

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

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. 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.

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." 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?"

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." Critics of the PACE trial have been accused of disliking the results and attempting "to find faults with them which would not be raised if they liked the results."

Allegations of death threats and smear campaigns
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.

National Institute of Health
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. As a result, McClure stated she was withdrawing as a reviewer of ME/CFS research grants and NIH appointed a new panel. 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.

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. Trudie Chalder, being heckler once at a seminar in Norway. Simon Wessely, a center manager for the PACE trial and credited in the research, did not give evidence. The NIH referred to a UK newspaper interview of Prof. Sir Simon Wessely published in 2011, 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.

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. A feature article in the BMJ (read by most UK doctors) was published in June 2011 called Dangers of research into chronic fatigue syndrome. The Times article was titled 'Doctor’s hate mail is sent by the people he tried to cure'. 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). One article was even called ‘It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade’.

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].” 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 and who have dismissed several as "vexatious": 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.”

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”. 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”.

But some accuse the investigators of a campaign against patients, labelling them as harassers to undermine their criticisms of the trial, including Angela Kennedy.

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.

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 in 2011 in the UK media about extremists harassing researchers. An article in the Establishment in May 2016, 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. 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. 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
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. 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.

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. Therefore, there was no evidence of any harassment despite the campaign in the media and science conferences.

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'. 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."

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 advocates attempting to find evidence, including filing Freedom of Information Act requests to public bodies.

Keith Geraghty
Keith Geraghty: "...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." — "... 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."

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. 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."

Jonathan Edwards
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."

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." "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." 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.

Caroline Struthers
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." 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.''

Carol Monaghan, MP
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.

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

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.

Journal of health psychology
An attempt was made to block publication of a Journal of Health Psychology, Special Issue: The PACE Trial by claiming that it had not been peer reviewed.

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, 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. When Tuller contacted Professor Crawley asking what statements were incorrect, and offering to change anything that was untrue, she did not respond.

Countess Margaret of Mar
In 2012, an interview with Simon Wessely was published by The Independent 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 findings", she responded with an open letter to Simon Wessely 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, 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

 * *2012, Letter from Countess Mar to Professor Simon Wessely