By David Tuller, DrPH
I have spent two weeks hammering the CFS/ME Research Collaborative about â€œRenal-gateâ€â€”that is, vice-chair Esther Crawleyâ€™s recent lecture at a conference of kidney disease experts, in which she falsely accused me of writing â€œlibellous blogs.â€ The CMRCâ€™s chair, Stephen Holgate, recently assured me that Dr. Crawley had the â€œfull supportâ€ of the executive boardâ€”a statement I dutifully conveyed to Virology Blog readers.
To be clear, I donâ€™t know what Dr. Crawley actually said in the lecture, or if she mentioned my name. The slide live-tweeted from her talk, which featured the phrase â€œlibelous blogsâ€ near a screen-shot of one of my Virology Blog posts, speaks for itself. (Esther, if Iâ€™ve misunderstood and you meant to highlight my post instead as an example of an accurate, non-libelous blog, let me know ASAP.)
Despite the claim that Dr. Crawley enjoyed â€œfull supportâ€ from the board, one of the CMRCâ€™s charity members, ME Research UK, announced a few days later that it was withdrawing from the collaborative, â€œwith immediate effect.â€ ME Research UKâ€™s announcement did not mention Dr. Crawley, but the meaning was clear given the timing and abruptness of the move. So it appeared that the â€œfull supportâ€ of the board for Dr. Crawley was likely less than â€œfullâ€ even as Dr. Holgate made the claim.
I am now trying to ascertain what prompted Dr. Holgate to issue such a statement. I had assumed he canvassed every single member of the executive board to gauge whether there was in fact â€œfull supportâ€ for Dr. Crawley. Perhaps he didâ€”and perhaps ME Research UK affirmed support for Dr. Crawley yet decided to leave days later for unrelated reasons. But that just seems unlikely.
On the Phoenix Rising forum, Renal-gate has generated a huge amount of interest. The Renal-gate thread has received more than 31,000 views. One commenter suggested that Dr. Holgate was urged to make the statement by the Science Media Centreâ€™s Edward Sykes, an observer on the CMRC executive board. I have no idea if this is true. I have written to both Dr. Holgate and Dr. Sykes to find out how this statement of â€œfull supportâ€ arose. I have asked if in fact every member of the CMRC board was canvassed before Dr, Holgate spoke on their behalf. I donâ€™t expect a response, but will provide an update if I hear from Dr. Holgate or Dr. Sykes or anyone who can shed light on what happened.
In other news, Action for ME also issued a statement last week. The statement came out of a board meeting that took place in Aprilâ€”that is, before these most recent events. So no one should expect it to have addressed the public relations nightmare that Dr. Crawley has since presented to all those within her circle, including Action for ME.
(I want to stress that conscientious organizations really do need to take time in responding to challenges. It is much easier for me to immediately blog and shoot darts than it is for those who run big groups to consult each other and address difficult issues in a responsible way.)
On the positive side, the Action for ME statement noted the ongoing controversy surrounding the PACE methodology and trial conduct, and stressed that the questions and concerns need to be addressed â€œas a matter of urgency.â€ The statement highlighted the recent reanalysis of the reported recovery findings from the 2013 Psychological Medicine paper, quoting the new studyâ€™s conclusion that “the claim that patients can recover as a result of CBT and GET is not justified by the data.”
The statement also urged NICE, which is re-visiting the issue of clinical guidelines for ME/CFS, to â€œtake full account of emerging biomedical research, the views and experiences of people with ME, and clearly reflect nuances around findings and re-analysis related to the PACE trial.â€ And it included a strong endorsement of the need for sharing of research data. These are important messages that deserve to be widely disseminated.
But the statement falls short in rejecting the call to sign onto an open letter to Psychological Medicine, which was posted on Virology Blog in March. The open letter requested retraction of the reported recovery findings and was signed by more than 140 scientists, academics and other experts, as well as ME/CFS organizations. The open letterâ€™s retraction request was based on the reanalysis of the recovery data, which documented how the PACE investigators weakened their recovery criteria in ways that jacked up their reported results. Although Action for ME was not informed of the open letter before it was originally posted, it was asked to add its name afterward. The organization declined.
In last weekâ€™s statement, Action for ME explained that decision by noting that Psychological Medicine had already refused the retraction request. â€œTherefore signing now will have no impact,â€ the statement noted. This is fallacious reasoning. I doubt many of us who signed the open letter believed it would magically result in retractionâ€”certainly I had no such delusion. The decision-makers at journals like Psychological Medicine and The Lancet have long shown themselves to be impervious to arguments based on logic, common sense and scientific integrity.
From my perspective, the function of the open letter was to demonstrate to the journal editors, the PACE authors and the UK medical establishment that the larger scientific world rejects the kind of upside-down evidence cited by members of the CBT/GET ideological brigade. Action for MEâ€™s argument that it â€œwill have no impactâ€ at this point to support the call for retraction is just silly. The opposite is true. An endorsement of the open letter by Action for ME would be viewed as a turning point in the debate, and I assume the organizationâ€™s trustees understand that.
I hope Action for ME will rethink this decision. I also believe the organization, given its close association with Dr. Crawley and her work, should specifically address the concerns raised by her lecture, although that seems unlikely to happen. In fact, having been pressed by patients to take a stand on the issue, the organization has already stated the following: â€œAction for M.E. had no input into this presentation and none of our team were present at the talk, so we cannot comment on its content.â€
Unfortunately for those who have allied themselves with Dr. Crawley, however, she has been caught leveraging her prestige and her public platform at a professional gathering to portray those seeking the truth about questionable research as â€œvexatiousâ€ and â€œanti-science.â€ She has been caught slandering me personally, along with my friend and colleague, Dr. Racaniello. I doubt she expected her slides to go viral. But they did.
Dr. Crawley has created a real mess for herself and for everyone around her, and she refuses to clean it up. Someone really needs to stage an intervention.