Trial by Error, Continued: My Letter to the University of Bristol

By David Tuller, DrPH

This morning I e-mailed the following letter to Sue Paterson, the University of Bristol’s Director of Legal Services and Deputy University Secretary, to protest Professor Esther Crawley’s accusation that I libeled her in blogging about her work. I cc’d the office of the university’s vice-chancellor, Professor Hugh Brady.

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Dear Ms. Paterson:

I have recently learned that Professor Esther Crawley of the University of Bristol’s Centre for Child and Adolescent Health, in her inaugural lecture on February 24th of this year, accused me of libel. During her talk, she showed a slide with the phrase “libellous blogs,” accompanied by a screen shot of one of my blog posts on Virology Blog. While that slide was on the screen, she also mentioned “libellous blogs,” obviously referring to the Virology Blog post, among others.

This libel accusation is false. Given that Professor Crawley made this unsupported charge in such a high-profile academic setting, I felt that it was important to bring the matter to your attention and express my surprise and displeasure. (I have also cc’d the office of the university’s vice-chancellor, Professor Hugh Brady.)

Virology Blog is a well-regarded science site hosted by Professor Vincent Racaniello, a prominent virologist at Columbia University. (I have also cc’d Professor Racaniello.) For the last year and a half, I have been writing an investigative series for Virology Blog called “Trial by Error,” about the many flaws of the PACE trial and related research, including Professor Crawley’s work. In accusing me of libel, she was also accusing my colleague, Professor Racaniello, of publishing libellous material. Professor Crawley used this slide again during a talk in April to the British Renal Society. I have written several subsequent posts about the libel accusation itself.

It is certainly true that the post highlighted in the slide, titled “The New FITNET Trial for Kids,” is harsh on Professor Crawley’s recent work. It is my opinion, as a public health expert from the University of California, Berkeley, that her research and the FITNET-NHS protocol are highly problematic in their presentation of the illness variously called chronic fatigue syndrome, myalgic encephalomyelitis, ME/CFS, or CFS/ME. In the post in question, I outlined these issues and carefully documented the facts on which I based my arguments. My concerns are shared by many leading scientists and experts in study design and research methodology.

In my post, I explained how Professor Crawley has misstated the NICE guidelines in both her research and her FITNET-NHS proposal, in ways that appear to eliminate post-exertional malaise as a required symptom. I also noted that she has conflated the symptom of “chronic fatigue,” a hallmark of many illnesses, with the specific disease entity she prefers to call “chronic fatigue syndrome.” As many have previously noted, this conflation generates samples that are far too heterogeneous to yield reliable and valid conclusions about prevalence, causes and treatments.

I acknowledge that I have expressed myself in sharp, colorful and–some would say–offensive terms. That just makes me sharp, colorful and possibly offensive. It does not make me libellous. Professor Crawley has a right to disagree with my interpretation of the facts and explain why I am wrong. And she is free to make her points in hard-hitting language, as I have chosen to do. But without providing evidence or documentation that what I wrote was inaccurate, she has no legitimate grounds to accuse Professor Racaniello and me of libel.

I have e-mailed Professor Crawley several times asking her to explain her charge of libel, or to apologize. In my e-mails, I have let her know that I would be happy to post her full statement on Virology Blog. In other words, I have offered her the opportunity to make her case, at whatever length she wants, in the same forum in which I purportedly libeled her. Moreover, should she document any factual errors in my work, I am of course happy to correct the public record, as I have done throughout my career as a journalist. Even though she has not so far responded with evidence to back up her accusation, the offer to post her full statement on Virology Blog and correct any documented factual errors still stands.

My main goal in sending this letter is to let you know that Professor Crawley’s  accusation will not deter me from my work. Nor will it impact Professor Racaniello’s support for this project, which involves accurate reporting and opinionated commentary on PACE and other issues involving ME/CFS. In the meantime, I suggest that someone should explain to Professor Crawley that  accusing other academics or anyone of libel without providing evidence—and then refusing to respond to reasonable requests for clarification–is unacceptable, unjustified and reckless on many levels. Professor Crawley should not make public accusations that she cannot or will not defend when challenged.

I have not cc’d Professor Crawley on this letter. Because she has declined to respond to my recent requests for an explanation and my offers to publish her full statement on Virology Blog, I see no point in further efforts to communicate with her. I therefore trust you will convey to Professor Crawley the concerns I have expressed here on behalf of Professor Racaniello and myself, as well as our determination to keep pursuing this investigation.

Sincerely—

David Tuller, DrPH

 

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If you appreciate my PACE-busting efforts, I urge you to help me continue with this project by supporting my crowdfunding campaign:

https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1

Comments on this entry are closed.

  • Valentijn

    Excellent letter! It’ll be interesting to see how (or if) they respond.

  • smashman42

    No doubt if you did CC Professor Crawley in on this email, she would have considered that harassment. Actually, she probably considers this harassment regardless. Anything other than worshipping at their feet seems to be harassment to these people! Disagree in anyway = personal attack or something absurd.

  • Joan Byrne

    Once again, many thanks for continuing to fearlessly pursue this issue with Prof Crawley. It was jaw dropping at the time to see her lecturing at the British Renal Society on ways to avoid releasing research data for reanalysis by others including tips on how to challenge Freedom Of Information requests – and all in the name of hiding raw data from people who would wish to test her hypothesis and ‘results’ from various trials she has conducted or been a major player in.

    To then go on to claim that such requests and reanalysis (based on actual real data that the PACE trial PIs were forced to release by a court of law) were libellous is almost beyond comprehension for any professional.

    Such conduct has no place in true science. Such conduct should always be called out. I hope that somewhere in those audiences she addressed there are at least a handful of people with integrity who were taken aback by her presentation and my wish is that such people would speak out against this type of behaviour too. Prof Crawley is standing on the wrong side of history. A tipping point of biomedical research has now been reached with regard to Myalgic Encephalomyelitis and her attempts to smear you and patients is akin to putting her finger in the dam.

    In all my 60 years on this earth I have never before witnessed such polarisation. On the side of Prof Crawley are a bunch of other dinosaurs who have built their careers on attempting to prove that this illness is primarily psychological and that to investigate further would be only to ‘enable’ those very ill people to remain ill. On the other side, patients and their advocates, I have truly never come across people with such high levels of integrity in my entire life. Wonderful people who have been dealt a very difficult card and have had their life totally overturned by this illness. Wonderful, compassionate people who want nothing more than real science into the cause and treatment of their illness. Wonderful people who try and support each other through the darkest days.

    Your interventions will be reflected in the history of the abuse suffered by very ill people at the hands of pseudoscientists. I’m happy to play my small part in writing that history and support you in your endeavours to overthrow this cabal.

  • Lady Shambles

    Very interesting & thank you. I’m following this interaction with Bristol Uni with particular interest.

  • Jan Wade

    Professor Vincent Racaniello, Columbia University stated: “This is a flawed study, it has to be fixed and people are being harmed by it.”

    Racaniello V and Tuller D (2016) Twiv 397: Trial by Error. This Week in Virology. http://www.microbe.tv/twiv/twiv-397/

  • Jan Wade

    “Professor Coyne and Professor Laws of the University of Hertfordshire have
    criticised, in a joint letter to Lancet Psychiatry, the long-term
    follow-up analysis of the PACE trial that was published in 2015. Referring to the results of the study as a whole, they said:

    ‘There are no group differences, and the overall mean
    short-form 36 (SF-63) physical functioning score is less than 60. It is
    useful to put this number in context. 77% of the PACE trial participants
    were women, and the mean age of the trial population was 38 years, with
    no other disabling medical conditions. Patients with lupus have a mean
    physical functioning score of 63, patients with class II congestive
    heart failure have a mean score lower than 60, and normal controls with
    no long-term health problems have a mean score of 93.'”

    Coyne, James; Laws, Keith (18 Jan 2016), “(comment) Results of the PACE follow-up study are uninterpretable”, The Lancet Psychiatry

  • Jan Wade

    “The data presented are uninterpretable. We can temporarily suspend
    critical thinking and some basic rules for conducting randomized trials
    (RCTs), follow-up studies, and analyzing the subsequent data. Even if we
    do, we should reject some of the interpretations offered by the PACE
    investigators as unfairly spun to fit what [is] already a distorted
    positive interpretation of the results.”

    -Prof. James Coyne – “Professor Coyne is Professor of Health Psychology, University
    Medical Center, Groningen and University of the Netherlands;
    Distinguished Visiting Professor at the Institute for Health Policy,
    Rutgers, the State University of New Jersey; and Professor Emeritus of
    Psychology in the Department of Psychiatry, University of Pennsylvania.
    He is one of the most cited psychologists in the academic literature.”

    https://www.whatdotheyknow.com/cy/request/cfs_correspondence_on_the_depart?utm_campaign=alaveteli-experiments-87&utm_content=sidebar_similar_requests&utm_medium=link&utm_source=whatdotheyknow

  • Jan Wade

    “The primary outcome self-report variables are susceptible to
    manipulation, investigator preferences for particular treatments, peer
    pressure, and confounding with mental health variables.

    The Pace investigators exploited ambiguities in the design and execution
    of their trial with self-congratulatory, confirmatory bias. Investigators’ attempts to correct methodological issues with statistical strategies lapses into voodoo statistics.”

    -Prof. James Coyne

    http://blogs.plos.org/blog/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/

  • Jan Wade

    Professor Rebecca Goldin, George Mason University, stated: “How can we judge
    whether the improvements seen in primary and secondary outcomes
    associated with CBT and GET are “real” if “recovery” does not always
    require clinically meaningful improvement, and if the meaning of “normal
    range” includes averages for people in their late 70s and early 80s?””

    http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

  • Jan Wade

    Trevor Butterworth, Director, Sense About Science, USA, stated: “The director of Sense About Science USA greeted news of the Tribunal’s decision by stating that the ‘PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared)’ and ‘PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review’.

    Butterworth T (2016) “#PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we shd do medicine (transparent, shared).”

    Butterworth T (2016) “@hangingnoodles This is why #PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review”.

  • Jan Wade

    “James Coyne has claimed that he and the journal investigating this matter have ‘come under pressure from a number of sources, including Richard
    Horton, editor of the Lancet’ and . . . ‘this is emerging as a
    major, maybe historic confrontation between the forces pushing for
    sharing of data and the British establishment’.”

    http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

  • Jan Wade

    George Faulkner writes, in part, in his Article at http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

    “The QMUL Council’s minutes recorded no mention of the serious problems identified with the PACE trial or the way results were released, although presumably a reputation for producing poorly conducted and misleadingly presented research would concern potential research participants more than the release of anonymised trial data. There is no indication that the council discussed the ethics of using tactics at the Tribunal that seemed designed to take advantage of, and promote, prejudices about those suffering from a stigmatised health condition.
    It is surprising that QMUL decided to continue with this approach, when there had already been signs that doing so could serve to attract further criticism.

    Following QMUL’s decision to appeal against the Information Commissioner’s judgement that PACE trial data should be released, James Coyne, a professor of health psychology, requested the data underpinning PACE results published in a journal which requires authors make data available to other researchers. The refusal letter he received argues that: ‘the active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.’ It is worrying that anyone would think that these are legitimate reasons for denying access to trial data which is having an important impact upon the lives of patients.”

    *Kennedy B, Stephenson D, Watson N (2016) First-Tier Tribunal, Information Rights.
    Appeal Number: ΕΑ/2015/0269 http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

  • Jan Wade

    George Faulkner writes, in part, in his Article at http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html:

    “In a major breakthrough for people with ME/CFS a judge has rejected a university’s £200,000 attempt to prevent release of data from the controversial medical trial, that was the first to receive DWP funding.

    An Information Tribunal has rejected an attempt to prevent the release of important results from a controversial medical trial.

    The PACE trial was a large randomized trial of interventions for Chronic Fatigue Syndrome (CFS).[3] It cost over five million pounds of public money, yet problems with the design of the trial and the way in which it was conducted meant that results were always likely to be biased towards the PACE researchers’ preferred approaches.

    The support from respected academics was noted by the Tribunal’s majority decision: *’The identity of those questioning the research, who had signed an open letter or supported it, was impressive.’

    A number of those academics speaking out about the problems with the PACE trial have expressed concern about the PACE researchers’ failure to engage with criticism, and this was included in the Tribunal’s majority decision as an explanation for why there was a public interest in releasing the requested data: ‘there is a strong public interest in releasing the data given the continued academic interest so long after the research was published and the seeming reluctance for Queen Mary University [the institution appealing against the order to release anonymised PACE trial data] to engage with other academics they thought were seeking to challenge their findings (evidence of [PACE trial researcher] Professor Chalder).’

    Queen Mary University of London (QMUL) appears to have attempted to use the prejudices which surround ME/CFS and patients’ concerns about some researchers’ work to justify their refusal to release data from the PACE trial.

    If the PACE trial’s critics could be portrayed as unreasonable, obsessive and dangerous, then there would be greater concern about releasing information to them, and even just their requests for information could be considered vexatious. However, neither the Information Commissioner nor the Tribunal were persuaded.

    The Tribunal’s majority verdict went on to conclude that: ‘It was clear that [PACE Trial Prof. Anderson’s] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder.’ Of Chalder’s testimony, the Information Commissioner reported that ‘she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants.’

    [The tribunal stated they wished] ‘to thank all participants for the helpful manner in which they have presented their arguments and submissions. We have been provided with an extraordinary amount of ancillary and background information on and about the important subject matter under consideration and have considered all of it. There can be no doubt about the Public Interest in the subject matter which is evident throughout the course of this appeal, and beyond, and we are grateful for the assistance that has been given to us in this regard.'”

    *Kennedy B, Stephenson D, Watson N (2016) First-Tier Tribunal, Information Rights.
    Appeal Number: ΕΑ/2015/0269 http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

  • Thank you again David for having the determination to see this through. It is clear that the accusation of libel was made assuming you would never see the slides in question.

  • Moira Dillon

    Huge congrats to David Tuller for his strong challenge of the flaws in certain pieces of research. We are fortunate to have David on our side against the continuing abuse of giving inappropriate therapies and treatments to ME patients, treatments that have been clearly proven to be damaging and totally wrong for ME patients. We are also lucky to have David stand up against the constant insults towards the ME patient population when they stand up to bad science.

  • Scott Simpson

    In an era of fake news, you are a real journalist exposing fake research. Thank you David.

    Supporting David in his pursuit of exposing the Crawley Cult and the harms that have perpetrated, directly and indirectly, on people living with ME around the world, is an easy and immediate way we can all get behind with a donation.

    Donating so David can continue his dogged pursuit of health justice for people with ME, is an investment in increasing access to real ME research and appropriate ME treatments – together, we can make that a reality so please donate: https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1

  • Anil van der Zee

    It seems that all Prof. Esther Crawley has on her side at the moment is gaslighting patients and insulting academics. If only her science and data would speak louder than this it would actually make an impression. For the moment she’s making herself and the university of Bristol look a lot worse.

  • Wendy Boutilier

    Crawley’s statements of Libel continue with open hostility to an opposing view of her work with children who will only become increasingly sicker than they already are should they enter her program. It is a well known fact that Crawley is part of a group of self appointed M.E. Experts who openly accuse active M.E. Advocates of using “threats of physical harm” towards them. Advocates have repeatedly asked for examples of these threats to no avail. The use of “libel accusations” is another example of invisible threats only this time they are trying to use their tactics against a professional peer who is in a position to publicly discuss it. Crawley cannot produce any example of Libel although she has been invited to do so on several occasions.

    Thank you David Tuller for using your expertise with integrity. A healthy advocate with integrity is difficult to find in the M.E. Community but desperately needed to support our side of this debilitating disease.

    Please donate to David’s crowd funding campaign if you are financially able. This campaign can lift us out of the purgatory of bad science and into a platform solid scientific research.

  • Luise

    Excellent letter!

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  • Jeremy bearman

    esther is really bad news for ME patients around the world. we try so hard to support medical researchers and then this woman undoes all the good work through her perverted research

  • JustinReilly

    Sickening! Thank you for letting us know, though.

  • JustinReilly

    Thank you, David. This is typical of them of course, but that makes it no less sickening.

    Of course, truth is an absolute defense to a claim of libel. FYI, unfortunately, as I understand it, in Britain, a plaintiff does not have to show that the defendant’s statements are false, the defendant must show they are true. That is insane that that is the law there. In any event, of course that doesn’t make it moral for her to lie by claiming you libeled her. And morally the burden is of course on her to show you are lying, which, obviously she can not do, since she is the one who is lying.

    Thank you for fighting for us!

  • jmtc

    According to the Fitnet NHS FAQ, post exertional malaise is part of the entry criteria for the study, although the study protocol could have been clearer about this. The NICE guidelines themselves seem somewhat unclear, as they seem to include a PEM-type criterion twice both as a defining characteristic of CFS/M.E. fatigue and as an additional extra symptom.
    From the Fitnet NHS FAQ http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/
    “Q. How many children and young people will be recruited to the study with post-exertional malaise? A. Post-exertional malaise is part of the study eligibility criteria so children and young people can only be recruited if they have post-exertional malaise. “

  • JustinReilly

    P.S. She would have to show damages though AFAIK.

    In any event, her false allegation that the blogposts are libel, is very likely itself libel!