Trial By Error, Continued: My “Tear It Up” Talk at Invest in ME

By David Tuller, DrPH

First, since I’m in London at the moment, I need to say that it feels weird and even wrong to be posting about PACE-related issues right after Saturday night’s terrible events. But in our f**ked-up world, life goes on for everyone else, including ME/CFS patients, and my job is to report this stuff, and so that’s what I’m going to do.

On Thursday, wearing a beautiful and beautifully ironed shirt, I gave a talk at the dinner before this year’s annual Invest in ME conference, at a hotel right next to the Tower of London. About 100 or so scientists, advocates, patients, caregivers, and others attended the event and had little choice but to listen to my presentation: “The PACE Trial: ‘Thing of Beauty’ or Pile of Trash?” It was Sir Simon Wessely who coined the “thing of beauty” line. I guess he thinks PACE is the Mona Lisa of clinical trials. Of course, “pile of trash” was my own counter-formulation. I assume no one wonders what side of that equation I’m on.

In addition to outlining the unacceptable flaws of the trial, I discussed whether the ethical and methodological lapses could be defined as “research misconduct.” And then, as foretold in the title slapped onto my presentation by Invest in ME (“Tear It Up!”), I engaged in a bit of performance art. I tore up not just one but three papers. First was the 2011 Lancet paper. Next, the 2013 Psychological Medicine “recovery” paper.  Finally, by special request from interested parties, I ripped up an Esther Crawley paper—specifically, her 2016 prevalence study in Pediatrics, which featured her inflated claim that almost two percent of kids in the U.K. suffer from chronic fatigue syndrome when all she documented was that they suffered from chronic fatigue.

(The front desk at the hotel had printed out the three papers on single-sided sheets rather than on both sides. So these were three thick stacks. I have to confess that I slightly pre-tore all three, so I wouldn’t be struggling on the podium to initiate the rip.)

After I finished, with shredded scraps of bad studies scattered on the floor around me, it was time for a few questions. A U.K. doctor stood up and asked me what I thought about some apparently authoritative hearsay: Dr. Crawley’s reported intention to have Bristol University slap me with a cease-and-desist letter (see correction below) to stop “harassing” her. After my initial surprise, I laughed. What a boon to my crowdfunding campaign that would be! Let’s be clear: Dr. Crawley publicly accused me of libel several weeks ago and has since refused to provide either an explanation of her charge or an apology. But, if this hearsay is true, she apparently thinks I’m the one doing the harassing.

Now it’s certainly true that I have e-mailed Dr. Crawley multiple times. I have sent my purportedly  libelous blog posts in which I have outlined what I view as egregious flaws in her research. I have also sent her the various posts I wrote about her accusation of libel, which she made during a recent talk to the British Renal Society. I have assured her in each of my recent e-mails that I would be happy to post a statement of any length from her on Virology Blog, so she can explain why she considers my work libelous. It didn’t occur to me that making such an offer or being persistent in seeking details about her defamatory accusation could be construed as “harassment.” (That being said, I’m perfectly happy to refrain from sending her any more of my blog posts, if she’d prefer. However, that means I will not be able to fulfill my journalistic responsibility to seek comment from her on anything I write involving her actions or her research.)

In fact, as I’ve noted before, Dr. Crawley appears to be unable to distinguish between criticism she dislikes and serious misconduct, like libel and harassment. I’ve written very negative things about her work, and that makes her mad. I get that. But I have based all my statements on documented facts. Any attempt to pull a stunt like sending me a “cease-and-desist” letter (see correction below) in an effort to suppress my accurate reporting and opinionated commentary would further damage her reputation and trigger an uproar from patients. If she is actually considering this, I hope those close to her—Stephen Holgate? Sonya Chowdbury?—have the wherewithal to tell her that such a move would not only be stupid but futile.

Dr. Crawley doesn’t scare me. I know a lot of lawyers, and I have the science on my side; she has her “dysfunctional cognitions” about the effectiveness of CBT and GET, along with her belief that PACE was a “great, great” trial, as she said months ago in a radio interview. But as the open letters to The Lancet and Psychological Medicine have demonstrated, dozens of top scientists and academics from around the world share my poor assessment of PACE and recognize that the reported results cannot be taken seriously.

I don’t know if the hearsay about Dr. Crawley’s intentions is correct. But if it is, and she chooses to pursue this ill-advised strategy, she will have a fight on her hands, and she will lose.

 

*Correction: In two places, I referred to a “cease-and-desist order.” I have changed “order” to “letter.” My guess is I would first get a letter from Bristol University demanding that I “cease and desist” whatever it is they want me to stop doing. If I refused, they could presumably seek a “cease-and-desist order” from a judge or court or other relevant authority to force me to stop whatever it is they want me to stop doing.

 

Comments on this entry are closed.

  • Wendy Boutilier

    Once again our engaging Professor has delivered an assessment on the garbage called the PACE Trial Study, at the Invest In ME Colloquial in London. There was no guarantee that the study would be torn up but the super powers of David Tuller has restored our faith and helped build our confidence. We are forever in your debt.

  • Lisa Petrison

    Bravo.

  • AndyPR

    Here’s the link to David’s crowdfunder, please consider helping David continue pursuing the truth by donating.

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

  • Scott Simpson

    Facebooked to share the inspiration. Thanks David. Keep tightening those screws!

  • Phil Conrad

    Thanks for the recap, David. Much appreciated.

    Editorial nit: In the 4th to last paragraph, last sentence, I think you meant to type “fulfill my journalistic responsibility,” instead of “full my ….” (I don’t know how else to contact you about this.)

    I”m greatly enjoying this series of sensible, plain-spoken blog posts.

  • Patricia Fero

    HAPPY HAPPY that you shredded the Crawley work on kids.

    https://uploads.disquscdn.com/images/b8fcf1c53b350f8a6ca78121e995fc4884e4ee2ffff205fb40b3ae3477a00a71.jpg

    IF she comes after you, if she dares to come after you, she may get a humiliating time out. Cheering from the sidelines.

  • Tearing up the papers is great theater. I have to remember that.

    Still, I hope she doesn’t actually go after you – it can be expensive and time consuming to be sued, and you have better things to do with your time. Although it might give you HUGE credibility in some quarters. Hmmm…

  • Lady Shambles

    Frankly I’d love to see her ‘up the anti’, not least because then, like some of her colleagues at the recent ICO PACE Tribunal, she could be forced into a court of law in which she would be compelled to tell the truth (ahem!) and the body of evidence Dr Tuller could present to prove his point would be incendiary, blowing the whole BPS / ‘ME is an aberrant thought pattern’ paradigm out of the water. Bring it on Esther. My knitting needles are at the ready.

  • Olivia Rowe

    Cease and desist? From scientific debate? My, oh my Esther, I’m pretty sure that is anti-science.

  • Steve Hawkins

    Desistance is futile. 🙂 (y)

  • JustinReilly

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

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