by David Tuller
During a recent talk at the annual conference of the British Renal Society, pediatrician and staunch PACE proponent Esther Crawley accused me of libeling her. I wasnâ€™t at her presentation, but her slides were captured and tweeted. Dr. Crawleyâ€™s lecture recounted her heroic struggle against the dark forces of anti-scienceâ€”presumably, those pesky ME/CFS advocates who challenge her work. One slide included a mention of â€œlibellous blogs,â€ along with a screen shot of one of my Virology Blog posts. Hm.
This libelous Virology Blog postâ€”â€œTrial By Error, Continued: The New FITNET Trial for Kidsâ€–was about Dr. Crawleyâ€™s flawed research into ME/CFS and her proposed study of Internet-based cognitive behavior therapy for kids. The post explained how Dr. Crawleyâ€™s research conflates â€œchronic fatigueâ€ and â€œchronic fatigue syndrome,â€ thus dramatically increasing the apparent prevalence of the illness. In the post, I also took aim at Dr. Crawleyâ€™s FITNET-NHS protocol and an earlier Dutch study of the same online intervention. I will not review the arguments here, but everything I wrote was based on facts.
In that post and elsewhere, I have expressed my strong opinion, as a public health academic and professional, that Dr. Crawleyâ€™s research is misleading. In pushing that perspective, I have used sharp and snarky rhetoric to ensure my voice was heard. Maybe Iâ€™ve even been obnoxious. But that just makes me sharp, snarky and obnoxious. It does not make me libelous. Something has to be untrue for it to be libelous, and Dr. Crawley has not identified any actual errors in my work.
Itâ€™s not surprising that Dr. Crawley would dislike my opinions and find them offensive. But my opinions are fair comment and based on my interpretations of the documented facts. There is an appropriate legal remedy for libel, and it is not to stand in front of a crowd of nephrologists and make baseless but serious accusations. Dr. Crawley should know better. And she should vet her slides with lawyers before she pulls a stunt like that again.
Having now informed Britainâ€™s community of renal experts that I have engaged in libelous bloggingâ€”and that my colleague, Dr. Vincent Racaniello, has engaged in libelous blog-publishing–Dr. Crawley should explain herself. Several days ago, I asked her via e-mail to provide evidence for her accusation; in other words, to tell me what is inaccurate in my posts. I offered, of course, to correct any inaccuraciesâ€”something I do even when Iâ€™m not being accused of libel. I offered to run any statement she sent as part of my post, without editing or trimming it. Dr. Crawley did not respond to my e-mail.
In addition to her position as a professor of child health at the University of Bristol, Dr. Crawley is deputy chair of the CFS/ME Research Collaborative (CMRC). Her reckless accusation of libel raises questions about her judgment, and it certainly casts a shadow over any organization in which she plays a leadership role. I have e-mailed the other members of the CMRC board to express my dismay at Dr. Crawleyâ€™s accusation. I have also asked them to publicly disavow it.
To be sure, Dr. Crawley might feel under pressure at the moment, having recently suffered a humiliating public setback. She is deeply involved in the ME/CFS Epidemiology and Genomics Alliance, or MEGA, an ambitious proposed research project that grew out of a CMRC initiative. In March, MEGA announced that the Wellcome Trust had rejected its preliminary application for funding, meaning the group was not invited to submit a full proposal.
Wellcome is a major source of non-governmental funding for health and medical research, so this rejection of the MEGA application is a huge blow. Although the reasons for Wellcomeâ€™s rejection were not disclosed, we can speculate on some of the possibilities. Perhaps the application from Dr. Crawley and her colleagues was simply sub-par–poorly argued or inadequate for any number of reasons. It is possible the Wellcome reviewers were perplexed at the MEGA request, since the projectâ€™s goal of collecting samples from ME/CFS patients appears similar to what a respected and well-established organization, the U.K. ME/CFS Biobank, is already doing successfully. It would be reasonable for Wellcome to wonder whether funding a completely new parallel project for the same illness would be an effective use of their resources. I assume other grant-makers might have similar questions.
Another intriguing possibility is that the Wellcome reviewers have actually gotten wind of the growing international controversy over the PACE trial. Perhaps they recognize that the evidence base behind the CBT/GET approach is fast eroding, now that many experts outside the orbit of Dr. Crawley, Sir Simon Wessely, and the Science Media Centre have reviewed the study and assessed it harshly. Â Given the changing attitudes, the Wellcome reviewers might even have wondered why Dr. Crawley still defends PACE so vigorously, as when she told an interviewer late last year that it was a â€œgreat, greatâ€ trial.
Whatever the reason for Wellcomeâ€™s rejection of the MEGA application, the bad news for PACE supporters keeps coming. In March, more than 100 scientists, clinicians and other experts–from Berkeley, Columbia, Stanford, Harvard, University College London, Kingâ€™s College London, and elsewhere–signed an open letter to Psychological Medicine. (I helped organize the open letter, and also signed it.) The open letter, posted on Virology Blog, demanded retraction of the â€œrecoveryâ€ findings published by Psychological Medicine in 2013. In outlining the studyâ€™s multiple missteps, the open letter bluntly declared that â€œsuch flaws are unacceptable in published research; they cannot be defended or explained away.â€
Given Dr. Crawleyâ€™s recent endorsement of PACEâ€™s greatness, does she consider all the signatories of that open letter to be libelous, or just me? It is likely that many if not all of those experts would agree with my opinion that Dr. Crawleyâ€™s research conflates â€œchronic fatigueâ€ and â€œchronic fatigue syndromeâ€ in a misleading manner. Would that qualify all of them as libelous?
Fortunately for the patient community, scientific and academic concern over the PACE enterprise continues to build. The Journal of Health Psychology (JHP) has just published a series of blistering commentariesâ€”or perhaps libelous, depending on your perspective–about what is now being referred to as â€œPACE-gate.â€ The commentaries reflect the genuine surprise in the broader research community at PACEâ€™s methodological lapses. No one, it seems, has ever before come across a clinical trial in which, as in PACE, participants could actually be â€œrecoveredâ€ on key outcomes at baseline, before any treatment at all.
The JHP is based in the U.K., so publication of the commentaries represents a welcome departure from the stubborn, longstanding reluctance of the British academic and media establishments to seriously question the PACE investigators and their supporters, like Dr. Crawley, on scientific grounds. Hopefully medical journals and news organizations will soon start conducting their own independent investigations into this huge, publicly funded disaster. Maybe they will even ask why the entire U.K. medical establishment accepts as legitimate a clinical trial in which participants could be simultaneously defined as disabled enough for entry and yet â€œrecoveredâ€ on key outcomes. (My own JHP commentary focuses on how the PACE investigators offer non-answers instead of answers, and then claim to have answered all of the questions.)
No matter how many times they try, PACE proponents are unable to provide credible and logical explanations for the irregularities of the researchâ€”at least, credible enough to make the questions disappear. Instead, they have accused critics of this and that malfeasance, all the while complaining about being persecuted themselves. I understand the urgency behind their increasingly strained and even laughable efforts to defend this indefensible body of researchâ€”these scientists are fighting for their reputations. But they are losing that fight because they are so clearly wrong on the science. In disseminating false accusations of libel, Dr. Crawley has merely embarrassed herself and exposed the desperation and intellectual weakness of the position she is seeking to defend.