Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative

by David Tuller, DrPH

To Members of the Board of the CMRC:

Not long ago, at the annual conference of the British Renal Society, your deputy chair disseminated the false accusation that I had libeled her. As a corollary to that, she also disseminated the false accusation that Dr. Racaniello, the Columbia University microbiologist who hosts Virology Blog, had libeled her by publishing my work. I provided Dr. Crawley with a reasonable opportunity to offer either an explanation, evidence to support her serious charge, or an apology. Dr. Crawley has done none of these things.

I interpret that as Dr. Crawley’s admission that there is nothing in my blogs that needs correcting, and therefore nothing libelous. Yet her claim, which goes to the heart of my integrity and professional reputation, remains floating around out there in the ether. Slides that go viral live online forever. (Dr. Crawley’s lecture, of course, raises other concerns as well. For the moment, I am focusing on the one that involves me.)

I have no reason to believe this is the first time Dr. Crawley has made these reckless charges against Dr. Racaniello and me. She has probably stirred many audiences with her tales of courage in confronting “anti-science” zealots. However, I have no evidence of that, so I will pretend to believe this was an isolated episode. But I would be very, very unhappy to learn that Dr. Crawley has continued making such unsupported allegations. (Why was Dr. Crawley invited to talk to a group of kidney specialists, anyway? Can cognitive behavior therapy and graded exercise therapy now cure kidney disease just like they can cure ME/CFS?)

Although Dr. Crawley’s accusation is libelous and possibly actionable, I have no intention of suing her, as I have already indicated. But I do believe in moral closure. Dr. Crawley has so far failed her moral, ethical and professional obligation to rectify the situation. Given that she is the CMRC deputy chair, her unwillingness to clean up her mess also reflects poorly on the collaborative. Although I have conveyed my concern to you, I have heard nothing from the board. Perhaps I’ll hear something at some point in the future. But in not disavowing Dr. Crawley’s accusations in a timely manner, the CMRC is effectively endorsing and enabling her behavior, as well as allowing these falsehoods to continue to percolate among medical professionals. Your silence, like Dr. Crawley’s, is not acceptable to me. Nor is it acceptable to Dr. Racaniello.

On June 1st, I am honored to be giving the keynote presentation at the dinner before this year’s Invest in ME conference. I was planning to talk about PACE, and why it is–in my opinion—an incoherent pile of nonsense. I had not planned on talking about Dr. Crawley or the CMRC. Thanks to Dr. Crawley’s attention-getting performance, my plans have now obviously changed. I will of course still discuss PACE’s failings. But I’ve never been accused of libel before, so I’m eager to share the experience with colleagues.

Plus, Dr. Crawley herself has provided fantastic visuals: There she is on stage, and behind her looms an enormous slide that features, among other items, the phrase “libellous blogs” and a screen shot of one of my Virology Blog posts, along with my name. Slam dunk! Here I am, about to give a high-profile talk in front of top scientists and ME/CFS experts from around the world, and the cosmos gifts me with a slide that captures a researcher in the very act of slandering me! Even better, she happens to be a researcher very well-known to many if not all in the audience, by reputation if not in person! How cool is that? Small world!

In my talk, I will portray Dr. Crawley’s accusation as an example of the scare tactics employed by scientists unable to provide satisfactory and adequate explanations for their methodological choices. In Dr. Crawley’s case, as I reported in the purportedly libelous blog captured immortally on screen, these troubling choices include the routine conflation of “chronic fatigue” and “chronic fatigue syndrome.” That conflation dramatically inflates the reported prevalence of the illness and leads to all kinds of problems.

Dr. Crawley and other PACE cheerleaders, not to mention the PACE investigators themselves, are similarly unable to provide logical answers to key questions like: “How was it possible that 13% of the PACE participants were already ‘recovered’ on one or both primary outcomes at baseline, before any treatment at all? Why was this key information not included in the published papers? Why were these participants even in the trial in the first place?” It is easier to accuse me of libel than to answer these prickly questions.

Dr. Crawley also showed a slide of the patient petition campaign against the MEGA project. Perhaps she believes that the Wellcome reviewers were negatively influenced by this organized opposition when they rejected her preliminary application. That could easily be the case, although it is also possible, as I noted earlier, that the MEGA proposal was simply not up to Wellcome’s exacting standards. Unfortunately for Dr. Crawley going forward, this most recent incident and the viral photos of her “anti-science” lecture are likely to stick to her and her professional reputation like glue. Through an easy google search, prospective colleagues, collaborators, grant reviewers and major funders will likely learn that she has accused other researchers of libel without explaining herself, providing any evidence, or apologizing.

It is also troubling that Dr. Crawley has, once again, positioned the filing of requests under the U.K.’s freedom of information (FOI) law as part of the “anti-science” playbook. Her slides on “vexatious requests” and other FOI exemptions suggest she was schooling the nephrologists in the most effective ways to sidestep the law’s requirements and avoid legal obligations to provide documents and information. I wonder if the University of Bristol believes it is appropriate for Dr. Crawley to be disseminating such advice. I doubt very much she informed the nephrologists that the most high-profile decision on a FOI request related to PACE, from the First-Tier Tribunal last summer, demolished the argument that the request was “vexatious.”

In ordering the liberation of the raw, anonymized trial data, the First-Tier Tribunal also noted widespread concern in the scientific world about the PACE trial’s irregularities. In particular, the decision cited an open letter to The Lancet and its editor, Richard Horton, that I organized last year. That letter, posted on Virology Blog, was signed by dozens of leading scientists and clinicians, who wrote that the PACE trial’s flaws “have no place in published research.” An open letter to Psychological Medicine, posted in March and demanding retraction of the PACE “recovery” paper, was signed by more than 100 experts. In other words, any suggestion from PACE defenders that only “anti-science” patients are challenging this body of deficient research is demonstrably untrue.

The First-Tier Tribunal also found no evidence supporting the PACE investigators’ hyperbolic claims of being the victims of a campaign of harassment, although the ruling acknowledged that Trudie Chalder had been heckled somewhere. Let me reiterate this critical point: The expensive lawyers for Queen Mary University of London, representing the interests of the PACE team to the best of their august abilities, presented NO CONVINCING EVIDENCE that the investigators were subject to abuse and death threats. (Having said that, I have no doubt that Dr. Crawley and other researchers have received many distasteful, hostile e-mails. While that is deeply unfortunate, it is no excuse for the persistent refusal to acknowledge flaws in the research.)

Moreover, as a result of the court order demanding release of the data, everyone can now see what was obvious to patients long ago: The PACE investigators changed their endpoints mid-stream in ways that jacked-up their reported rates of “improvement” and “recovery.” Then, when patients wanted to see the results per the methodology promised in the protocol, the PACE investigators stonewalled and called those requesting the data “vexatious.”

At first, the “vexatious” meme worked for the PACE team. But not anymore. The First-Tier Tribunal saw right through it. The scientific case against PACE has now been documented in peer-reviewed journals, and more publications are on the way. Dr. Crawley might not have liked the First-Tier Tribunal decision. She can misrepresent the results of the reanalyses of the PACE trial data, as she did in an interview several months ago, and continue to hail PACE as a “great, great” trial. But invoking “vexatiousness” at this stage, after the tribunal ruling and publication of the reanalyses, is not a viable strategy.

Dr. Crawley has failed to notice that the situation has shifted dramatically in the past two years. Top scientists outside the bubble-think of CBT/GET adherents have scrutinized the PACE study, found themselves shocked at its deficiencies, and confirmed that the reported results are bogus. They have made their views public to demonstrate the depth of their convictions about the study’s flaws. Does Dr. Crawley consider all of them “vexatious”?

It is understandable the CMRC board would prefer to hunker down and ignore the growing public relations disaster that Dr. Crawley has created. But your group has already stumbled multiple times in its efforts to gain credibility with the patient community, not to mention with funding bodies like Wellcome. You don’t have many chances left, if any. Dr. Crawley’s viral cri de coeur against patients (and others) seeking the truth about PACE represents another black mark for the organization.

Ignoring Dr. Crawley’s behavior or letting the matter drag on for weeks and months is not a recommended strategy. With no explanation or apology for your deputy chair’s actions anywhere in sight, the CMRC’s reputation is sustaining serious ongoing damage. My best advice is to behave like responsible scientists and address the matter of Dr. Crawley’s unjustified public accusations against Dr. Racaniello and me. Enough is enough.

Best—David

David Tuller, DrPH
School of Public Health
Graduate School of Journalism
University of California, Berkeley

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