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.