By David Tuller, DrPH
I have spent two weeks hammering the CFS/ME Research Collaborative about “Renal-gate”—that is, vice-chair Esther Crawley’s recent lecture at a conference of kidney disease experts, in which she falsely accused me of writing “libellous blogs.” The CMRC’s chair, Stephen Holgate, recently assured me that Dr. Crawley had the “full support” of the executive board—a statement I dutifully conveyed to Virology Blog readers.
To be clear, I don’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 “libelous blogs” near a screen-shot of one of my Virology Blog posts, speaks for itself. (Esther, if I’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 “full support” from the board, one of the CMRC’s charity members, ME Research UK, announced a few days later that it was withdrawing from the collaborative, “with immediate effect.” ME Research UK’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 “full support” of the board for Dr. Crawley was likely less than “full” 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 “full support” for Dr. Crawley. Perhaps he did—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 Centre’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 “full support” arose. I have asked if in fact every member of the CMRC board was canvassed before Dr, Holgate spoke on their behalf. I don’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.
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In other news, Action for ME also issued a statement last week. The statement came out of a board meeting that took place in April—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 “as a matter of urgency.” The statement highlighted the recent reanalysis of the reported recovery findings from the 2013 Psychological Medicine paper, quoting the new study’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 “take 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.” 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 letter’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 week’s statement, Action for ME explained that decision by noting that Psychological Medicine had already refused the retraction request. “Therefore signing now will have no impact,” the statement noted. This is fallacious reasoning. I doubt many of us who signed the open letter believed it would magically result in retraction—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 ME’s argument that it “will have no impact” 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 organization’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: “Action 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.”
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 “vexatious” and “anti-science.” 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.
Comments
23 responses to “ME Research UK Drops Out of CMRC”
Thank you so much for your ongoing work! So grateful that you are out there, fighting for science.
Do incompetent doctors know that they are incompetent or do they blame everyone else for their incompetence? Usually incompetent people do not understand how incompetent they are because the factors that make them incompetent also make them unable to understand their shortcomings. I see it as the “Arrogance of Ignorance.” For Crawley, I too believe it’s time for her to take a step back and study the environment she’s built for herself. She’s taken too many wrong turns to be of use to families touched by Myalgic Encephalomyelitis.
I’m surprised Action for M.E.don’t have splinters from choosing to sit on the fence so often.
Yes thank you very much for all your excellent work on this and Prof Racaniello too.
Action for ME probably has some undisclosed conflicts of interests. One can speculate what they might be: perhaps an agreement with the CBT/GET lobby that patients be directed to Action for ME in return for Action for ME supporting the CBT/GET lobby as much as is possible without losing all credibility.
This is speculation, but there has to be a concrete reason for the pattern of behaviour by Action for ME.
My family have withdrawn support from Action for ME, we sent a letter with our concerns. Less money for them. Our fundraising will go to Invest in ME. I think the trustees statement was wrong to say that the focus on PACE was hindering scientific research. It is the EXISTENCE of PACE that blocks more doctors becoming interested in research.Plus all those NHS clinics are wasting money.
Enjoyed reading. As much as you enjoyed writing 🙂
(In)Action for ME seems unable to take a strong stance that would validate ME patients as seriously disabled in the face of the bio-psycho-social model which brands us as malingerers for not being cured by CBT/GET. By not signing the letter, and by continuing to not condemn PACE in the most stringent words possible, they allow us to continue to be gaslighted by our GPs, “specialists”, social care, and the DWP.
The recent MUPPETS abuse of children with ME featuring Dr Crawley as one of the speakers at the Royal Devon & Exeter hosted event shows there are no limits for unprofessional attitudes amongst this cabal.
I just heard that CEO son is treated by EC ( she does say in article son has ME, not sure if the EC as doctor part has been verified)
http://forums.phoenixrising.me/index.php?threads/surprising-revelation-from-action-for-m-es-ceo-in-the-huffington-post-about-son-having-m-e.51645/
Action for ME has been slowly losing their supporters for quite some time now due to their poor judgnment and inability to keep up with the current understanding of ME. Their support of PACE is just one more reason they will continue to lose funding and slowly become irrelevant.
Somebody should do a “family tree” kind of thing but a relationship type tree of the plp reviewing, institutions and everything related to PACE. An image speak a thousand words but it is not my forte
There is much ado, but in this case, it is not about nothing.
But here is another truth. Whilst we do generate a great deal of fair, reasonable and justifiable argument that under normal circumstances would be more than enough to initiate genuine responses of the kind one would expect under prevailing circumstances, this is not happening. Why so?
My very recent experience with medical colleagues is they are totally oblivious to our concerns. In effect, we are having no impact whatsoever. Everything we say and do is simply amongst ourselves. We are looked upon with contempt. We have no standing even now. We are ‘losers’, ‘loonies’ and ‘bullshit artists’.
These were words I have heard verbally used ‘in response’ to our open letter. The contents of the letter were of no relevance to them. They weren’t even read, as the authors, as renowned as they are, were of no consequence to them.
I agree with Olivia Beatty that the EXISTENCE of PACE blocks innovative research, but the culture behind it is just as damaging.
Thank you once again I know you will continue to fight for truth and integrity.
Let’s channel our frustration into an email campaign to various programs. I have emailed fileon4@bbc.co.uk. They like to expose scandals involving taxpayer money so start your email with that. Next inside.health@bbc.co.uk. They like to present evidence based medicine so use that angle. Finally let’s bombard the Today program yet again, and try Sky news. Best to leave these programs until the election is over. If these programs got hundreds of emails , maybe they would wake up. Spread it however you can. As an afterthought, should we petition Prof Julia Newton to withdraw her support from CMRC?
*plays Craw…uh devil’s advocate* I think she thinks she’s genuinely helping those who have been labelled by doctors as having something that is not in the body so it must be in our mind, if I would be so sure of that then I’m not sure I wouldn’t want to ‘protect’ us, or myself, from people such as yourself that are enabling us in our wrong thinking..
and now we also have lesion-gate ;//
I don’t think you could be any more PRO science than wanting accurate results to be reported from experiments, and to insist on proper statistics. Please keep doing so – those of us with ME/CFS are NOT improved, in the majority, by pushing ourselves into a crash or disbelieving our own symptoms (GET/CBT). I should know – this disease cost me 27+ years of my life, and a research career at Princeton.
Why are patients who are calling for objective, measurable science, openness and transparency be gas lit, stigmatised and called anti-science? In contrast universities such as Bristol support research such as Ester Crawleys in which she conflates chronic fatigue with the neurological disease ME/CFS, fails to include objective exercise assessments or any objective outcome measures. Fails to release any data or information on the outcome measures of her clinics……
Great news….the NHS clinics could be doing great heart rate based monitoring programs….objective physiological science. A wasted resource.
Unfortunately Ester Crawley and Action for ME’s Sonya Chowdry go back a long, long way. Despite the stubborn failure by EC to respond to calls to objectively monitor the children’s health and now the illness of her own son, the blind support of the CEO of Action for ME for EC is unfailing. Why?
We do zero PR; SMC does major PR.
Bravo!