By David Tuller, DrPH
At noon last Friday, at the University of Exeterâ€™s Mood Disorders Centre, Professor Esther Crawley gave a talk called â€œWhat is new in paediatric CFS/ME research.â€ When I saw a notice about the event the day before, I felt it might be my one chance to ask her directly about her concerns regarding my work and her accusation that I was writing “libellous blogs.” (If she were American, she would presumably have accused me of writing â€œlibelous–one L–blogsâ€).
I also hoped to gain insight into some other issues that have troubled me: why she still believes PACE was a â€œgreat, greatâ€ trial, why her prevalence studies use “chronic fatigue” as a proxy for “chronic fatigue syndrome,” why she is not concerned about bias given that she conducts non-blinded studies relying on subjective rather than objective primary outcomes, etc.
So many questions!
I’d heard that Professor Crawley is a compelling presenter with a strong dose of what many characterize as charm. This, I found out, is true. Unfortunately, she compellingly and charmingly presented a series of misleading arguments. The talk did not include any discussion of the obvious: that the biopsychosocial approach she has championed is losing ground rapidly, both internationally and in the U.K. Instead, she claimed that 22 percent of adults â€œrecoverâ€ with treatment–without citing the reanalysis of the PACE trial data that demolished that claim.
She stated that two percent of teenagers have what she calls â€œCFS/MEâ€â€”even though other experts, like Johns Hopkins pediatrician Peter Rowe, consider this estimate to be wildly inflated because it is based solely on reports of chronic fatigue, with no clinical examinations to rule out other causes and no evidence of post-exertional malaise. She referenced the 2007 NICE guidelines, which she helped develop, as support for the rehabilitative treatments she favors–without mentioning that NICE has rejected the advice to reaffirm those guidelines and is instead planning a â€œfull updateâ€ to replace the current version.
Professor Crawley did not explain why her much-hyped MEGA project, sponsored by the CFS/ME Research Collaborative, failed in major bids for funding from both the Wellcome Trust and the Medical Research Council. Also unmentioned was the U.S. National Institutes of Healthâ€™s decision to grant $2 million to MEGAâ€™s rival, the highly regarded U.K. ME/CFS Biobank. At the CMRC conference in September, before the announcement of that NIH grant, Professor Stephen Holgate, the CMRC chair, had spoken with hopeful enthusiasm about an upcoming meeting with the U.S. agency.
Poor Professor Holgate. He appears not to understand that Professor Crawley might have caused irreparable damage to her professional reputation with some of her recent behavior, such as accusing legitimate critics of being vexatious and libelous and appearing to advise other researchers on how to evade their obligations under the U.K.’s freedom of information laws. Perhaps Professor Holgate also does not realize how much the CMRC itself might have undermined its own credibility by its willingness to overlook and condone such antics.
And perhaps he and Professor Crawley are not aware that U.S. health officials interested in ME/CFS, not just patients and advocates, might sometimes read Virology Blog to keep current with developments in the field. The American public health establishment has now rejected the PACE trial; this summer, the Centers for Disease Control removed the recommendations for GET and CBT from its website. Scientists who passionately defend the “greatness” of PACE and refuse to acknowledge that it has been effectively debunked should therefore not be too surprised if U.S. agencies reject any funding requests.
In her Friday talk, Professor Crawley failed to mention new research documenting significant physiological dysfunctions among patients, such as the recent Newcastle University study indicating defective energy production in the mitochondria. She talked mostly about her own research but didnâ€™t explain why anyone should trust open-label trials with subjective outcomes, like FITNET-NHS, her online CBT trial for kids. When she discussed her recently published SMILE study of the cult-like Lightning Process, she didnâ€™t mention that even Action For ME, her close ally among the patient advocacy groups, raised real concerns about the trial and its findings.
Professor Crawley repeated the tiresome meme about the â€œharassmentâ€ purportedly faced by researchers in the field, supporting her point with screen shots of some of the overwrought and anti-patient articles that have appeared in the U.K. press in recent years. She did not mention that the First-Tier Tribunal last year sharply dismissed claims that patients had engaged in a campaign of threats against the PACE investigators. On a positive note, Iâ€™m pleased to report that Professor Crawley has apparently retired the slide that accused me of writing â€œlibellous blogs.â€ Perhaps Bristolâ€™s lawyers have informed her that making such a reckless, unsupported charge in high-profile public venues, including her inaugural lecture, puts her on slippery legal ground.
Last spring, after I first learned about the libel accusation, I e-mailed Professor Crawley repeatedly, seeking an explanation. In my e-mails, I offered to post her full response to my criticisms, at whatever length she wanted, on Virology Blog. I also offered to correct any mistakes she could document–something I do routinely, as a responsible journalist, even when I am not being accused of libel. I stopped e-mailing her after it became clear that she had no intention of ever responding or explaining anything. As a courtesy, however, I made sure to keep her colleagues on the CMRC leadership committee informed by sending them my blog posts about her activities.
(Even at this late date, I am happy to re-extend to Professor Crawley my longstanding offer to post on Virology Blog her full response to my concerns, along with her documentation of any inaccuracies or errors that would justify her libel accusation.)
At her Friday event, Professor Crawley spoke for about 45 minutes. Then she stopped and waited for questions. I raised my hand and introduced myself. When she heard my name, she looked seriously glum.
â€œHi, David,â€ she said.
â€œHi, Esther,â€ I responded.
Then things happened quickly and in a bit of a blur, so my memory of events might not be 100 percent accurate. I started asking about the bogus 22 percent â€œrecoveryâ€ figure. She interrupted and asked in a tone of some dismay if Iâ€™d come all this way just to see her talk. I told her that I was already in the U.K., and that I had friends in Exeter. Sensing that my time for asking questions might be cut off, I dropped the 22 percent issue and asked why she had accused me of libel and then failed to explain herself.
At that point, Professor Crawley indicated that she was going to stop the talk; I guess she doesnâ€™t mind attacking critics from the podium but cannot tolerate their presence in her audience. She said that my work has been unbelievably “defamatory”–but, as in the past, she did not cite any errors or inaccuracies that would warrant such a label. She also declared, if I heard her correctly, that Bristol University had sent me a cease and desist letter on her behalf. That was certainly news to me.
In fact, at the Invest in ME conference in June, I had heard that Professor Crawley wanted Bristol to send such a letter. I wasnâ€™t sure what exactly I was supposed to â€œcease and desistâ€ from. Exercising my right, as a public health professional and journalist, to investigate and express my opinions about Professor Crawley’s research? In any event, I have never received a cease and desist letter from Bristol. (Maybe it got lost in the mail. The U.S Postal Service can be very inefficient. Note to Bristol University: E-mail is more reliable.)
After this quick exchange, the moderator of the event stepped in and suggested that we were engaged in a private dispute beyond the scope of the presentation. I noted that it was most certainly not a private dispute, since Professor Crawley had leveled her libel accusation in public. Next, the moderator asked me to leave. I stood up, grabbed my bag, and left without a fuss.
I assume there was a lively discussion afterwards. I also assume Professor Crawley will use this incident to once again portray those who disagree with her as belligerent and vexatious. To be clear: My question was by nature tough and presumably unpleasant for Professor Crawley, but I spoke in a calm and reasonable tone. Perhaps, in retrospect, I should have asked about the flaws in her own research or stuck with my 22 percent question. Whatever. In the end, I asked the question I really wanted to ask, so I felt I had attained my objective.
So whatâ€™s the upshot? I believe that Professor Crawley wants to bully those who raise concerns about her work into silence rather than engaging in robust debate about the very real methodological and ethical problems with her studies. She also refuses to acknowledge what many experts have now recognized: The GET/CBT treatment approach for ME/CFS, based on the deconditioning/fear-of-exercise hypothesis, is scientifically bankrupt and is crumbling under the weight of its own absurdity. This isn’t happening fast enough for me and the patient community, but the trajectory of developments is obvious.
At this juncture, it would be fruitless to make further efforts to engage with Professor Crawley, either via e-mail or by attending another one of her performances. Sheâ€™s expressed her thoughts about my work, Iâ€™ve expressed my thoughts about hers, and we have no common ground. But I will, of course, continue to press my arguments and opine on her research and activities as I see fit. Stay tuned!