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 wasn’t at her presentation, but her slides were captured and tweeted. Dr. Crawley’s lecture recounted her heroic struggle against the dark forces of anti-science—presumably, those pesky ME/CFS advocates who challenge her work. One slide included a mention of “libellous blogs,” along with a screen shot of one of my Virology Blog posts. Hm.
This libelous Virology Blog post—“Trial By Error, Continued: The New FITNET Trial for Kids”–was about Dr. Crawley’s flawed research into ME/CFS and her proposed study of Internet-based cognitive behavior therapy for kids. The post explained how Dr. Crawley’s research conflates “chronic fatigue” and “chronic fatigue syndrome,” thus dramatically increasing the apparent prevalence of the illness. In the post, I also took aim at Dr. Crawley’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. Crawley’s research is misleading. In pushing that perspective, I have used sharp and snarky rhetoric to ensure my voice was heard. Maybe I’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.
It’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 Britain’s community of renal experts that I have engaged in libelous blogging—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 inaccuracies—something I do even when I’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. Crawley’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 Wellcome’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 project’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. 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 “great, great” trial.
Whatever the reason for Wellcome’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, King’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 “recovery” findings published by Psychological Medicine in 2013. In outlining the study’s multiple missteps, the open letter bluntly declared that “such flaws are unacceptable in published research; they cannot be defended or explained away.”
Given Dr. Crawley’s recent endorsement of PACE’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. Crawley’s research conflates “chronic fatigue” and “chronic fatigue syndrome” 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 commentaries—or perhaps libelous, depending on your perspective–about what is now being referred to as “PACE-gate.” The commentaries reflect the genuine surprise in the broader research community at PACE’s methodological lapses. No one, it seems, has ever before come across a clinical trial in which, as in PACE, participants could actually be “recovered” 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 “recovered” 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 research—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 research—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.
14 responses to “My Libelous Blogging on Virology Blog”
Also, although the Biobank is doing a lot of collection, it’s there to be a resource for researchers, not to run the big research projects on it’s own. So the MEGA study wouldn’t be so much duplicating anything as augmenting the possibilities.
That said, yeah, I’ve have major qualms since I saw the prominence of Crawley and a couple of the the other PACE supporters within the MEGA project. And I can’t be entirely sorry that it’s going back to the drawing board.
Personally I think the CMRC has a mix, some who are favourable to the BPS model and others who aren’t. I would note this from their latest meeting:
“One of the main challenges that continues to be addressed is that this
illness, or cluster of illnesses, is a psychiatric illness, which it is not. This
resulted in patients being referred to psychiatrists and there continued to
be a lack of effort and research into the biological nature of the illness.”
Anyhow, I recognise views differ on this – and I’ve massively gone off-topic 🙂
On balance, I still take the ‘more is better’ approach (within reason – I’m not arguing for more ‘beat them harder’ GET intervention trials) but I do understand why others, on balance, would prefer to see funding focussed on those who are not and have never been proponents of the BPS model.
Just a note, David – your commentary on the PACE trial doesn’t seem to be open access! I’d understood from the MEA that they’d arranged with the Journal of Health Psychology, that any and all commentaries on PACE would be made open access at no cost to the author.
Excellent. I remain impressed and very grateful for your refusal to let this debacle be forgotten. (y)
Except that in the story when the little child pointed out the truth they didn’t take 5 years to start believing him.
All smoke and mirrors from Esther Crawley, when patients and scientists put forward legitimate concerns about her work and that of the PACE authors she attacks them. She accuses critics of being anti-science and militants, all in order to divert attention away from the failings in her own and the PACE author’s scientific method and to try to marginalise those who raise genuine concerns. But it won’t work Esther, the wider scientific community is becoming aware of this nice little cosy arrangement and can see through all your bluster.
David you have quite rightly highlighted how Esther Crawley’s research conflates “chronic fatigue” and “chronic fatigue syndrome”. This muddying of the water does so much harm to patients with ME/CFS, because it is used to produce research that has no bearing on ME/CFS and which is indeed harmful when the resulting treatments are applied to this group of patients.
Shame on you Esther for how you treat very ill patients who have legitimate concerns, I hope that the scientific spotlight soon shines on your work, so that all can see it’s shortcomings.
Thank you David for all you are doing, please keep up your good work and I look forward to meeting you in Belfast, if well enough.
Hi Lisa, I checked out your new ME site and congratulate you on a job well done. I was curious if you might be willing to share this me/cfs petition maybe under your “advocacy” link or something close to that. The campaign tells my (and others) experience with me/cfs, points out some key facts of interest, and asks the NIH for proper research funding for this awful disease. We have just under 42,000 signatures.
I plan to go to D.C. On May 17th to fight for ME in a few days of congressional meetings– I will be bringing the petition along with me of course. It’d be great to have reached 45.000 or our original goal
Of 50,000.. but having even 40,000 is a gift. Anyway, I just thought I would ask and also say thank you for your new site– it really is accurately informative and a clean display of accessible info– good stuff! Here is the petition link–
Thank you again,
Awesome David… all I can continue to humbly say is thank you, thank you, thank you. Keep going.. your dedication is helping so many. And if this is libel, then DAMN, you make libel look good! Jk. THANK YOU again.
That quote from the minutes of the March 2017 CMRC Board meeting under ‘What good looks like: how to optimise the academia, charity and industry partnership’ by CMRC Chair Stephen Holgate exemplifies my point that your use of the word ‘seemingly’ was spot on. Appearances can be so deceptive and it is perfectly understandable to take what’s being said at face value.
“chronic fatigue” and “chronic fatigue syndrome”
Wouldn’t this fall under the “False equivalence” fallacy? I like the wikipedia example:
“The Deepwater Horizon oil spill is no different from your neighbor dripping some oil on the ground when changing oil in his car.”
Thank you so, so, so much from Germany! <3
Thank you, Mary. I posted a blog article about the petition on the website and shared information about it on accompanying Facebook page, called “A New Dynamic.”
Good luck in meeting your goal with this effort!
Link to blog article:
Thank you so much Lisa…. I really appreciate the help.