Trial By Error, Continued: A Few Words About “Harassment”

By David Tuller, DrPH

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

 

Last week, a commentary in Nature about the debate over data-sharing in science made some excellent points. Unfortunately, the authors lumped “hard-line opponents” of research into chronic fatigue syndrome with those who question climate change and the health effects of tobacco, among others—accusing them of engaging in “endless information requests, complaints to researchers’ universities, online harassment, distortion of scientific findings and even threats of violence.”

Whatever the merits of the overall argument, this charge—clearly a reference to the angry response of patients and advocates to the indefensible claims made by the PACE trial–unleashed a wave of online commentary and protest on ME/CFS forums. Psychologist James Coyne posted a fierce response, linking the issue specifically to the PACE authors’ efforts to block access to their data and citing the pivotal role of the Science Media Centre in the battle.

The Nature commentary demonstrated the degree to which this narrative—that the PACE authors have been subjected to a wave of threats and unfair campaigning against their work and reputations—has been accepted as fact by the UK medical and academic establishment. Despite the study’s unacceptable methodological lapses and the lack of any corroborating public evidence from law enforcement about such threats, the authors have wielded these claims to great effect. Wrapping themselves in victimhood, they 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.

Until recently, complaining about harassment worked remarkably well for the PACE team. Maybe that’s why they tried claiming victimhood again last October, when Virology Blog ran “Trial By Error,” my in-depth investigation of PACE. The series was the first major critique of the trial’s many indefensible flaws from outside the ME/CFS patient and advocacy community. Afterwards, the investigators complained that “misinformation” and “inaccuracies” in my stories had subjected them to “abuse” on social media and could cause them “a considerable amount of reputational damage.”

These claims were ridiculous—an attempt to deploy their standard strategy for dismissing valid criticisms. The PACE authors amplified this error in December, when they rejected Dr. Coyne’s request for data from a PACE paper published in PLoS One as “vexatious.” They had called previous requests from patients “vexatious” without attracting negative comment or attention—except from other patients. But applying the term to a respected researcher backfired, drawing howls from others in the scientific community with no knowledge of ME/CFS—the PACE team’s action was “unforgivable,” according to Columbia stats professor Andrew Gelman, and “absurd,” according to Retraction Watch.

(In fact, the PLoS One data, when ultimately released, will show that the paper’s main claim—that the PACE-endorsed treatments are cost-effective—is based on a false statement about sensitivity analyses, as I reported on Virology Blog.)

How did this theme of harassment and “vexatiousness” become part of the conversation in the first place? Starting in 2011, a few months after The Lancet published the first PACE results, top news organizations began reporting on an alarming phenomenon: Possibly dangerous chronic fatigue syndrome patients were threatening prominent psychiatrists and psychologists who were researching the illness. These reports appeared in, among other outlets, the BMJ, the Guardian, and The Sunday Times of London. The Times headline, a profile of Sir Simon Wessely, a longtime colleague of the PACE authors, was typical: “This man faced death threats and abuse. His crime? He suggested that ME was a mental illness.”

One patient had supposedly appeared at a PACE author’s lecture with a knife. Other CFS researchers had received death threats. Sir Wessely famously said that he felt safer in Afghanistan and Iraq than in the UK doing research into the disease—a preposterous statement that the press appeared to take at face value. News accounts compared the patients to radical animal terrorists.

According to the news reports, the patients objected to the involvement of these mental health experts because they were anti-psychiatry and resented being perceived as suffering from a psychological disorder. Editorials in medical journals and other publications followed the news accounts, all of them defending “science” against these unwarranted and frightening attacks.

In fact, the Science Media Centre orchestrated the story in the first place—not surprising, given its longtime association with the PACE team and its uncritical promotion of the various PACE papers. According to a 2013 SMC report reviewing the accomplishments of the first three years of its “mental health research function”: “Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.”

It’s great that the SMC not only spoon-fed Feilden the story but was so pleased with the reporter’s hard work that it nominated him for a prestigious award. In a brochure prepared for SMC’s anniversary, Feilden himself thanked the centre for its help in organizing the scoop about the “vitriolic abuse” and the “campaign of intimidation.”

Of course, patients were attacking the PACE study not because they were anti-science or anti-psychiatry but because the study itself was so terrible, as I reported last October. Luckily, a growing number of scientists outside the field, like Dr. Coyne and the top researchers from Columbia, Stanford and Berkeley who signed an open letter to The Lancet demanding an independent review, have now recognized this. How are patients supposed to react when a study so completely ignores scientific norms, and no one else seems to notice or care, no matter how many times it is pointed out?

The PACE study’s missteps rendered the results meaningless. Let’s recap briefly. The investigators changed their primary outcomes in ways that made it easier to report success, included outcome measures for improvement that were lower than the entry criteria for disability, and published a newsletter in which they promoted the therapies under investigation. They rejected as irrelevant their own pre-selected objective outcomes when the results failed to uphold their claims, and used an overly broad definition for the illness that identified people without it. Finally, despite an explicit promise in their protocol to inform participants of “any possible conflicts of interest,” they did not tell them of their work advising disability insurers on how to handle claimants with ME/CFS.

Patients and advocates have raised these and other legitimate concerns, in every possible academic, scientific and popular forum. This effort has been framed by the investigators, The Lancet and the Science Media Centre as a vicious and anti-scientific “campaign” against PACE. The news reports adopted this viewpoint and utterly failed to examine the scientific mistakes at the root of patients’ complaints.

Moreover, the reports did not present any independent evidence of the purported threats, other than claims made by the researchers. There were no statements from law enforcement authorities confirming the claims. No mention of any arrests made or charges having been filed. And little information from actual patients, much less these extremist, dangerous patients who supposedly hated psychiatry [see correction below]. In short, these news reports failed to pass any reasonable test of independent judgment and editorial skepticism.

Despite their questionable scientific methods and unreliable results, the PACE authors have widespread support among the UK medical and academic establishment. So does the Science Media Centre. Media reports, including last week’s Nature commentary, have presented without question the PACE authors’ perspective on patient response to the study. The reality is that patients have been protesting a study they know to be deeply flawed. Sometimes they have protested very, very loudly. That’s what people do when they are desperate for help, and no one is listening. To call it harassment is disgraceful.

Update 2/3/16: After reading some of the comments, I thought it was important to make clear that I don’t doubt the PACE investigators and some of their colleagues might have received very raw and nasty e-mails or phone calls. Perhaps some of these felt threatening, and perhaps they called in the police. (I’ve worked as a reporter for many years and have also received many, many raw and nasty e-mails, so I know it’s not enjoyable—but pissing people off is also part of the job.) The news accounts, however, provided no independent verification of the investigators’ charges. And the point is that, whether or not they have been the recipient of some unpleasant communications, the investigators have repeatedly used these claims to justify blocking legitimate inquiry into the PACE trial.

Correction: I reviewed the three major articles I linked to, not every single article about the issue, so my description of the coverage applies to those three. I originally wrote that the articles contained “no” interviews with actual patients. However, the Sunday Times article did include a short interview with one ME/CFS patient–a convicted child-molester who blamed his crime on fall-out from his illness. I apologize for the mistake, although I leave it to readers to decide if interviewing this person represented a sincere effort on the reporter’s part to present patients’ legitimate concerns.

I also wrote that the articles included no statements from law enforcement confirming the claims of threats. The Guardian article contained this sentence: “According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.” This statement is vague, anonymous and impossible to verify with anyone in particular, so I don’t view it as an authoritative statement from law enforcement.

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  • Send it to me, then. You can get in touch with me via my blogsite, Slightly Alive: http://slightlyalive.blogspot.com

    I was once accused of harassment. This was years ago, when Princeton English Professor Elaine Showalter wrote a really bad book called “Hystories,” about “hysterical epidemics” spread by rumor. Three of the chapters were about the sort of thing you’d expect – stories of alien abduction, ritual child abuse.

    But she also had a chapter on “chronic fatigue syndrome” and another on Gulf War “Syndrome”. It was her theory that both of these were “hysterical epidemics” spread by rumor.

    She even went further. CFS, she said, was almost always a disease of women. Frightened by the approach of the year 2000, we imagined ourselves sick. To TALK about our symptoms was to SPREAD our symptoms. So she said that the doctors who “believed” us and treated us, and researchers who did biomedical research on our disease, were actually causing its spread and making us worse!

    I wrote a straight-up critique of her book and caught her attention. Most of my critique rested on the absence of footnotes from the medical literature (a critique I also think should be made of the CBT/GET literature, including PACE). She said she had DELIBERATELY stuck to popular newspapers and magazines because she didn’t want to “spread” the mistruths in the medical literature! Except she DID quote Simon Wessely, and a historian named Ed Shorter who had started out as a labor historian and shifted to gender history, but never acquired a background in medicine. I suspected Wessely had greatly influenced her thesis, given that she had written the book on sabbatical at the Wellcome Institute in England.

    At the time, Showalter went to book signings and had radio interviews. At the book signings, patients with the disease would line up to try to tell her how REAL it was – it was very sad – I knew a lot of patients who did this and I told them she wasn’t going to budge; it was just going to deplete their energies and hurt them in the end. She eyed them mistrustfully and seldom let them speak to her or ask questions.

    She also had an altercation with my then-specialist, a brilliant woman who was barely 5 foot tall (Showalter is much larger), who was on a radio show with her and became incensed when she was accused point-black by Showalter of spreading the disease by pretending to treat it! She had brought hard evidence of our physical abnormalities, but Showalter woudn’t let her read them, saying that would cause more patients to get sick. My doctor said it was all she could do to keep from slapping her. (She didn’t.)

    in the meantime, in PATIENT discussion lists, and on websites for PATIENTS, we told jokes about Showalter and Wessely and all, because the best way to handle being trashed by people who still had their lives and jobs, was to treat it as Monty Python would. I was quoted on someone’s blog as saying that Showalter was welcome to a pint of my A negative blood any time she wanted to prove to the world that my disease was really just “fin-de-siècle angst.” I meant an infusion. The other patients knew that.

    So imagine my surprise to read an article in the New York Times on the harassment received by Showalter from the patient community – very similar to the ones that appeared in the British press about Wessely et al. She said she had been attacked at a book signing in Washington – as near as any of us could figure out, she was referring to a patient in a wheelchair who pulled on her clothes to get her to look down and pay attention.

    And she told the NY Times that I had threatened to throw blood on her. Really. I guess she meant my offer of a pint of my blood, though that was a joke intended for other patients.

    The “Journal of Higher Education,” a highly-regarded trade publication for the academic industry, so to speak, decided to do a story on the two of us. They came out and interviewed me in person. After that interview, their take on the story changed dramatically. They wrote about how severely sick I was. She continued to insist I was faking it. That was pretty much the end of the controversy.

    There was kind of an interesting coda to all this. Wessely emailed me out of the blue, saying that i was wrong to say she was an acolyte of his – he said he had never met her (I have evidence to the contrary). Given we were emailing, I thought it was an opportunity not to be missed. I told him that I had things physically wrong with me, including NMH/POTS (a problem with my blood pressure plummeting after standing for about 10 minutes) and Hashimoto’s thyroiditis, as well as T4-T3 conversion problems. I said they were considered co-morbidities in the States.

    Wessely told me that if so, he would not diagnose me with CFS. He went on to say that if I had presented at KCL with those conditions, I would have been directed to a DIFFERENT clinic, not to his. He would never have even seen me. He recommended that i get treated for those problems (I was already being treated for them) and said I did not have CFS.

    I knew that in part that had to do with my being diagnosed with the Fukuda definition (1994) and his patients being diagnosed with Oxford (that admitted no physical abnormalities). But it was also interesting in light of Hopkins’ professor Peter Rowe’s article in JAMA in 1995 demonstrating through tilt table tests that NMH/POTS was present among patients diagnosed with CFS to an extent that was statistically very significant.

    I am sorry to have written so much, but I think this sheds light on some of what can get called “harassment” in the press – certainly by the New York Times, taking Elaine Showalter’s word for it – at the same time it sheds light on the problems with the so-called “evidence-based” research of the Wesselyite, or “biopsychosocial,” or CBT/GET school of psychiatry regarding ME and CFS.

    IF THERE WAS ANYTHING PHYSICALLY WRONG WITH ME – WHETHER OR NOT I WAS BEING TREATED FOR IT – I WOULD NOT HAVE BEEN INCLUDED IN WESSELY’S PRACTICE AT KCL.

    So … what does it mean when “evidence-based” refers to a patient “base” that has already been selected for a psychiatric clinic because they had no (discerned) physical abnormalities?

  • PS – the millennium came and went – and we have yet to receive an apology from Elaine Showalter for continuing to be sick …

  • P.M.

    One of the reasons why people doubt the accuracy of the allegations of abuse is because the British news media have a history of blatant exaggeration in favour of the PACE trial investigators. The first media blitz about the PACE trial results typically hyped the trial results, in part because the results were hyped by the PACE trial investigators themselves and the press releases they gave. It is therefore unsurprising that when the first media blitz about the alleged abuse appeared only months later, the patient community was doubtful about the accuracy of what was being reported, particularly when the tone was rather sensationalist. Not to mention the decades of hyping CBT/GET before 2011.

    Some people have also grown suspicious of the timing of the media blitzes: whenever there was a new wave of criticism of the PACE trial, within weeks there is a new wave of allegations of abuse and harassment. The conflation of legitimate questions and criticism with harassment has caused further doubt about claims of abuse. Trust in the British news media was already low, but the Science Media Centre appears to be actively involved in public relations campaign for the PACE trial, which damages their credibility among the patient community.

  • Celtica

    blogging and endless chat on social media has not stopped wessely, white and others in the past and will not stop them. Bring legal cases and court cases against these psychiatrists. This will expose them in open courts, and defeat them. The basis for such court cases is provided here http://www.me-ireland.com/bogus.htm#basis

  • Celtica

    blogging and endless chat on social media has not stopped wessely, white and others in the past and will not stop them now or in the future. Bring legal cases and court cases against these psychiatrists. This will expose them in open courts, and defeat them. The basis for such court cases is provided here http://www.me-ireland.com/bogus.htm#basis

  • Celtica

    it is a fact that blogging and endless chat on social media has not stopped wessely, white and others in the past and will not stop them now or in the future. Bring legal cases and court cases against these psychiatrists. This will expose them in open courts, and defeat them. The basis for such court cases is provided here http://www.me-ireland.com/bogus.htm#basis

  • Celtica

    talk is cheap, and blogging, emails, social media are useless and ineffective, and has not stopped wessely, white and others in the past and will not stop them now or in the future. Bring legal cases and court cases against these psychiatrists. This will expose them in open courts, and defeat them. The basis for such court cases is provided here http://www.me-ireland.com/bogus.htm#basis

  • Nic

    Anyone with ME, no matter what side of whichever debate they’re getting into, has limits on how long they can talk and think and type, before they have to walk away and get some rest. Even if the conversation isn’t over.

    That’s just the nature of ME!

  • Nic

    He also won the inaugural John Maddox award (2012) for “his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues”.

    *sighs*

  • Jan Masleid

    Good God what irony. I left him a message from the heart. I hope he realizes that America is not impressed with the incessant showering of swine with perfectly good pearls. (Although, I must admit that the association with the similar greatness of Donald Trump did come to mind. He has many people hornswoggled over here).
    Could his peers please make him a ‘scarlet letter’ to proudly wear around his neck while on the lecture circuit?…. V for Victim?
    That I could applaud. That is a petition I could get behind. Why, it could even have pearls glued on for a fitting touch of class.