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

Comments on this entry are closed.

  • Sue Nutt

    Thank you SO much for standing up against what these people in authority are doing and saying. M.E. and CFS sufferers have had to put up with their comments/opinions/professional statements for far too long, and many have taken their own lives because we sufferers have been treated appallingly. None of us have been believed, and the UK still will not accept the Worldwide research that this illness is NOT in our mind. It prefers to listen to the psychiatrists that have fooled the World for decades. I have been ill for 30 years. I am now 57 and will never get my life back.

    Sue Nutt
    Dorset

  • Sheila Campbell

    Very well said! Professor Crawley’s talk was completely out of order and unprofessional. The fact that neither she nor the CMRC care to apologise speaks volumes.

  • Lady Shambles

    As a person who happens to have had the misfortune to suffer with ME I find it absolutely astonishing that any patient charity worth its salt would have considered joining the CMRC in the first place given, from what we assume from her writings and other media, Crawley’s prejudices. That any remain under the canopy of this absurd ‘tent’ *now* just beggars belief. I will wait with some anticipation to hear your talk at the upcoming Invest in ME Conference via DVD (having been mainly housebound for over 2 decades attending would be out of the question sadly).

  • Anil van der Zee

    First of all David. You are just amazing. So well written. Smart, to the point.
    I do wonder why she is doing this. She must know times are changing. This is not only the patient community picking up on these things. And she insulting top scientists and academics. What is she thinking?? It makes no sense. Much like her research…
    Anyways thank you for everything.

  • Anton Mayer

    Indeed, patients are growing more skeptical about the CMRC. The failure of the CMRC to condemn the false claims made by the PACE trial authors suggests that the unstated purpose of this organization is to protect the interests of the CBT/GET lobby, which is increasingly threatened by advances in biomedical research. It would appear that the CBT/GET lobby intends to control the narrative by promoting convoluted illness models where biological and psychological factors are equally important and CBT/GET are part of the routine treatment. Yet, if one looks past the spin, hype and obfuscation, the evidence actually shows that the effect of CBT/GET are best described as “small transient placebo response”.

    I expect that there will be a number of CMRC members at the the Invest in ME conference. Bringing up Crawley’s unprofessional behaviour will hopefully make it clear that there is a real problem with the CMRC.

  • Erik Johnson

    What is intriguing is that all this controversy doesn’t lead “researchers” to ask “What is the fuss all about?”
    They never ask:
    “Why is everyone arguing so much over “ME/CFS”, and is there any way to find out exactly what these ME and CFS terms mean – WHY they were even developed?”

    Which causes me to wonder why the customary and normal methods of solving disputes is being utterly ignored.

  • Wendy Boutilier

    I’m guessing that Crawley or any of the PACE Authors never expected someone other than sick PWME to fight back. They’re still operating on the premise of school yard bully tactics by pushing us around and generally treating the ME Community as less than human. They won’t win

  • Jo Best

    Thank you for standing up for science David, as well as for truth, justice, patients and families.

  • Johanne

    Thank you so much, David! Extremely grateful greetings from Germany (you’re famous worldwide!)

  • Sue Wilson

    Tuller and Racaniello have been more than patient in responding to this unfair, and frankly illegal, libel accusation against them and deserve prompt answers from Crawley and the CMRC. In addition David Tuller has outlined here many gross inaccuracies in Crawley’s presentation; one very important to me, as a ME sufferer, is about her claim of vexatious ME patients, when indeed the loudest voices against PACE and its methodolgy have been from scientists, academics, medics and researchers worldwide who have made comment based on a wealth of expertise

  • Thank you David. It is surprising that Dr Crawley has accused you and also Virology blog of libel, and yet she is unwilling to explain details. Thank you for taking a stand and in so doing, also taking a stand for sound science and people with ME. Your talk at our Seeking Solutions talk in Belfast later this month will be elucidating.

  • Art Vandelay

    Thank you from Australia where GET and CBT are still the officially recommended treatments for ME/CFS.

  • Diane Kirk

    Thank you David, excellent letter.

  • Accused Parent

    I think you deserve a very big and full apology by all of them! You keep me going on my darkest days. It is comforting to know someone understands the struggle.

    What strikes me as strange is that the people who organised the Conference have not asked questions or apologised for the tone that was clearly set by the slides she produced? So this must be how they behave or feel at ease with this sort of behaviour. I was sad to see some of the comments of the doctors that were sharing Professor Crawley’s slides. Do patients concerns account for so very little in the medical world?

    The other thing that makes me stand back in dumbfounded disbelief is that just recently she made a similar sort of talk connected with Action for ME, and no outcry of condemnation from them either? Even though they are always saying Doctors do not understand this illness and they strive to change this. Is there any wonder that doctors and clinicians dismiss ME if this is what they are being told by a researcher put forward by such a charity?

    The third thing that strikes a deep cold sadness within me is the amount of children that she has been allowed to research on with no accountability to the consequences. I am a mother of a child with ME and I get to hear the harrowing accounts of the effects these types of treatments have on children. Once they have been harmed they have no place to go. Several in recent times have been admitted to hospital and the doctors are frantically trying to help but with little or no information on how to help children with ME that also have PoTS, OI and or EDS, or what to look for as in pancreas, kidney and heart, they are at a loss to know how to help and the children are left to suffer. Parents are mostly forced into hiding away so that no more damage is done to their children, this is utterly unacceptable for 2017 medievil attitudes it would seem are still strong.

  • Scott Simpson

    You are the man for this job, keep after her! And let us know what we can do to help you get the apology.

  • Teresa Greenwood

    The first slide in her presentation listed things that gave increased chances of CFS, including substance abuse and criminality. I personally highly doubt these factors and would like to see evidence. That aside, why would you include a slide listing these factors in an anti-science talk if not to question the credibility of ME/CFS sufferers from the outset??
    Disgusting smear tactics.

  • Heath

    Thank you for your perseverance & endeavour, David. The PACE Trial authors & proponents have spent their lengthy careers accustomed to being unchallenged & untouched, apart from the odd ‘vexatious’ patient, carer or parent.

    When the odd outsider has dared to question their involvement in ME research, they relied upon either maintaining their mantra or to simply remain silent, in the hope the unbeknownst would eventually move on. They have relied upon ME apathy.

    Since your first PACE article, over eighteen months ago, we seem to have entered the ‘silent’ phase. But how many more new occurrences of ME and fatalities do we have to experience before these charlatans are finally brought to book by their superiors?

    Who is policing their practices?

    This being said, I do hope you and Dr. Racaniello will be around for the long haul.

  • Henry Anderson

    As well as libeling Dr David Tuller Dr Crawley has vilified a vunerable patient population (without any basis in evidence) in a public lecture given to medical professionals. The CMRC need to address serious concerns about this unprofessional behaviour.

  • You are certainly doing more for the ME/CFS community than they have ever done: keep the questions coming, and don’t put up with slander or libel on her part. Glad you will have a keynote address in which to continue the fight for those of us who suffer from Chronic Fatigue SYNDROME. And would like some answers which work, please.

  • Elle See

    Thank you, again, for standing up for those of us who can’t stand up for ourselves.

  • Paradigm Change

    Thank you, David.

    Lisa Petrison, Ph.D.

  • Milo Paradiso

    That presentation to the British Nephrology Society was beyond bizarre, on top of being libellous. She used copyrighted photos of a poor Albanian family. She groomed the scientists in the audience on how to ignore requests for data, by deeming the demands vexacious, amongst other things.

    I hope CMRC is deeply disturbed, as they should be, of the behavior of Esther Crawly and demands she resigns from the board. There is no room for such behavior when millions of patients from around the world suffer from the tactics used by the BPS (bio-psycho-social) lobby, including her, around pseudo-science of ME and CFS.

    Thank you Dr Tuller for this open letter to CMRC.

  • Margaret Smith

    Excellent response as ever Dr Tuller. So grateful to have you fighting our corner for us.

    It beggars belief how this unprofessional behaviour is allowed to continue and frankly doesn’t say much for the future of scientific integrity.

    Please know we will support you every step of the way in your quest to get the apology for this abusive behaviour that you, Dr Racanciello and so many others are most certainly owed.

  • Emma

    All I can say is. YES YES YES! And seriously cheers for standing up for patients. The time and dedication you give to pwme is amazing. Sometimes I read research papers and wonder what the heck they teach people at university but folks like you who are sticking up for patients and decent research give me hope!

  • deboruth

    By far the most frightening aspect of Esther Crawley’s activities at present is her leadership of the MAGENTA trial. That trial will evaluate graded exercise therapy (GET) on child “cfs” patients. Past experience has demonstrated that a large portion of child and adult patients who truly have ME/”cfs” have been made permanently more disabled by enduring treatment with GET. This is due to the biochemical dysfunctions inherent in the true disease. Therefor let us pray that MAGENTA does not recruit many subjects with the real disease; perhaps, like PACE, it may rely heavily on the fatigue-only Oxford definition.

  • Jaime

    I don’t see them apologizing or stepping back the rhetoric at this point. They have painted themselves into an idealogical corner, and will only recant their CBT beliefs when that is more advantageous than to continue along the same old, party line.

    Their organization stepped far outside the realm of reasonableness and I do hope that they see that you would be well within your rights to sue them. The narrative that they are being ‘attacked’ by a small group of patients and crazies can’t last forever, but with the narrative of the anti-vaxxers behind them, it can last a good long while yet, as an argument to emotion.

    It would be great to see them slide out of the way of the wrecking ball, but something tells me they’re going to choose to ‘stand firm’ and crumple as an organization, instead.

  • Jaime

    It boggles the mind the way that she includes such ‘data’ when, so far as I know, no peer-reviewed journal has ever published such an association; and I am very familiar with the literature.

    Like everything else, I suppose it’s based in her “feelings” about patients and has zero supportable evidence in the real world.

  • Barry

    Exactly!

  • Barry

    CMRC need to realise that doing nothing does not mean nothing is happening. It’s like the truth has been held back by a dam all these years, and the dam is now fracturing, and more and more of the truth is leaking through, widening the cracks ever more as it does so – a snowball effect. Trying to patch the cracks in the dam is doomed to failure now. Doing nothing to the dam is also doomed to fail. The longer the CMRC wait, the clearer it will eventually become to everybody how they tried to hold back the truth. Better to cut their losses now; whatever mess they may find themselves in, it will only get worse the longer they do nothing.

  • Luke

    “Good scientists want to know if they are wrong. They want to have their work scrutinized and should be willing to share their data without the requesters having to resort to a court order.” -Harriett Hall

    Good scientists embrace criticism because they are interested in getting to the truth. That is afterall the goal of science.

    Are you been anti-science or pro-science when you ignore or do not adequately address criticisms of your science by other scientists? Is it appropriate behavior for any scientist to ever side-step or obfuscate the content of critisisms by trying to dismiss them on any grounds other than by proving the content of the critisisms themselves aren’t valid or true? Is throwing labels on the people making the criticisms in order to discredit the person so as to discredit the criticism itself intellectually honest behavior of a scientist?

    A scientist using fallacious reasoning (ad hominem attack) to deal with someones argument.. in this case an argument of flaws in your science… seems mightly illogical behavior unbecoming of a scientist as an actual defense and reply to serious and legitimate criticisms of their science. Appropriate for the school yard maybe… but not in matters of truth of scientific claims. Especially those claims like that of PACE which affect the patient group in such a huge way. If the claims are wrong… research money is going to science that is not finding effectice treatments for patients… one of the worst but not only consequences of the CBT/GET hypothesis.

    If a scientist refuses to defend their science by adequately addressing tough but legitimate criticisms of their science… and worse… uses false reasoning a logical falacy to defend it… isn’t that a red flag? Is that person even intellectually capable of conducting good science if they resort to a fallacious form of reasoning to defend their science?

    Ofcourse a scientist can’t spend his or her life defending against trivial criticisms… but when a scientist hasn’t had to defend against many, or any, tough critisms of their science at all… dissmissing the first tough criticism with “that’s vexacious” is no excuse for a scientist. And equivalent to a tennis player refusing to return serve. I think.

  • 1989

    Well said, David. Merchants of bad science do not get to call their critics “anti-science”.

  • Steve Hawkins

    Now that the US EPA has started laying off its top scientific advisers, I can see an opening coming for an ‘alt scientist’ who can cure climate change ‘beliefs’ with a good bracing dose of CBT and GET…

  • Paul Fox

    Dr Tuller, the ME community owes you a great debt of gratitude. We all desperately need you to continue.
    The PACE protagonists’ and supporters’ ability to conduct this deceitful campaign goes to suggest that there is a terrible problem with the UK medical and academic communities’ ethics. Of course, the same goes for their ability to publish, unchallenged for so long, their fiddled findings.

  • Paul Fox

    Yes. Despite all of that, and despite being exposed as the purveyors of dangerous quackery, they are experimenting on children. Not only that, but they are doing so with the co-operation of the NHS, and of GPs and hospitals across the country. The name Josef Mengele springs to mind. His deeds too were performed under official licence, on the most vulnerable people. I wonder how many of the victims are taking part under threat from social services.

  • Margaret Laverick

    Thank you, how this situation can continue in the UK is crazy. The chosen few get air time on BBC news and the public and patients think the information is trustworthy. Please keep up the pressure, I am certain you will not let this drop.

  • John R.

    Dear Mr Tuller, I do not suffer ME myself but my daughter has suffered it for the last 12 years. Each time I see her she talks about the PACE fiasco and how its failings have been neither acknowledged nor recognised by those involved with it. My daughter, and thousands of sufferers like her, have been extremely frustrated for many years about the very small attention paid to this illness by so many so called ‘experts’. I am sure that your open letter comes not only as a massive breath of fresh air for all those many ME sufferers but for their families and friends too. I do hope your letter brings a prompt and positive response from the CMRC Board, which has been fiddling like Nero for far, far too long.
    My thanks and very kind regards.

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  • Jo Best

    Esther Crawley’s resignation from the board (if that were to ever happen) would most likely just be a PR tactic to take off the heat, in the same vein as when they said Peter White had resigned from MEGA just a couple of days after posting their petition for mainstream funding. Esther Crawley has the full support of the Chairman of the CMRC Board and between them they have full support from the patient charity representation on the board.

  • Jo Best

    Assuming the 12th London International Invest in ME Conference DVD will, as usual, include the pre-conference dinner presentation: http://www.investinme.eu/IIMEC12-news-Pre-ConferenceDinner.shtml
    along with the full conference presentations: http://investinme.eu/IIMEC12.shtml#agenda
    For info, throughout May #meawarenessmonth earlybird pre-order discount on the DVD of the London International Invest in ME Conference: http://www.investinme.eu/IIMEC12-DVD-Order-EB.shtml

  • Fiona

    Excellent letter, David. You’ve covered all the reasons Dr Crawley’s conduct has been so unprofessional, and made it clear to the CMRC Board that their inaction has major ramifications. Thank you for your ongoing efforts on behalf of patients around the world.

  • Margaret Smith

    I certainly hope Davids’ speech is included in the DVD Jo. Just ordered my copy last night. Hoping it’s going to be a particularly good one this year what with all the good things going on in the global research field at the minute (though sadly not so much here in the UK).

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  • WendyGoodall

    Bristol University have been complicit in allowing EC to avoid the release of any outcome data from her CFS clinics. Some of the FOI requests can be found on What do they know – many different reasons for the non release of information. Noting released. In fact it appears that nobody has any data on outcome measures from CFS clinics. What is going on at the Bristol UNi and other NHS clinics? Funded to do what?

  • WendyGoodall

    Any changes from Sonya Chowdry now that her son has ME?