libelous

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.

By David Tuller, DrPH

For the last couple of weeks, I have been hammering the CFS/ME Research Collaborative to take a position on the actions of its deputy chair, Libelous Esther—better known as Dr. Esther Crawley. As I reported in several previous posts, Dr. Crawley falsely accused me of writing “libelous blogs” and Dr. Racaniello of posting them. To keep members of the CMRC board in the loop, I have sent them e-mails with links to these posts. In these e-mails, I have tried to be direct and pointed, but reasonably polite. I have mostly succeeded, although the recipients might have their own perspective.

At first, the CMRC refused to respond at all. Then the chair of the board, Stephen Holgate, sent me what could only be interpreted as a “f**k off” message. He told me that Dr. Crawley’s actions had nothing to do with the CMRC because it was just a “voluntary” group of colleagues with “no official standing.” Therefore, he wrote, I had to pursue my concerns through “other avenues.”

To me, “other avenues” meant more blogging about the false accusations of libel and the CMRC’s inadequate response, among other things. So I wrote yet another post about L’Affaire Crawley, noting the CMRC’s explanation that it could not possibly take a position because it was only a voluntary group with “no official standing.” I duly sent this post to the CMRC board.

And on Friday, I finally received from Dr. Holgate an enthusiastic endorsement of Dr. Crawley and her work. The statement made no mention of her recent multi-media spectacle, including her false libel accusation and her portrayal of legitimate requests for information as “vexatious.” In other words, the CMRC has sent me its second “f**k off” message. Happy International ME Awareness Day!

Here’s Dr. Holgate’s e-mail:

Dear David,

Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair. The CMRC exists to promote the highest quality of basic and applied evidenced-based and peer-reviewed research into CFS/ME and Prof Crawley helps us to do this. Prof Crawley’s science is tested through the demanding procedures that all scientists must face when seeking grant-funding and publication in leading journals. The high quality of her research is recognised by her peers and she is a Professor of Child Health at the University of Bristol and an NIHR Senior Research Fellow. She is the clinical lead for the specialist child CFS/ME service at the Royal United Hospital in Bath and, sadly, is one of very few scientists in the UK actively trying to find a way to help children affected by CFS/ME. Contrary to some claims this collaborative is not fixated on any one cause, therapy or branch of science – our only goals are to improve our understanding of this serious illness and help alleviate suffering. In the meantime, our work remains focused on increasing collaboration and funding for more research and we will continue to work with all key stakeholders to achieve this.

Yours,
Stephen

I wrote back to Stephen and other board members that I took his answer to be an endorsement of Dr. Crawley’s actions and her false libel accusation. I noted that PACE, like Dr. Crawley’s research, had also been “tested through the demanding procedures” required of scientists. Given that PACE was a disaster, I pointed out, I didn’t hold those “demanding procedures” in as high regard as he did. I again noted the serious flaws in Dr. Crawley’s research.

Finally, I let Stephen and the CMRC board members know that I would be discussing the PACE mess and the Crawley situation, including their own role, during my talk on June 1 at the Invest in ME conference dinner. I included a link to the dinner information, in case any of the CMRC board members wanted to attend.

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On a related issue, a number of people have urged me to sue Dr. Crawley. I have made it clear I’m not going to do that. Not because she doesn’t deserve it, but because I don’t deserve it. Lawsuits are hell for everyone. The opportunity costs in time, money, and energy are incalculable. Except for Donald Trump and attorneys, no one who has ever been involved in a lawsuit would ever want to be involved in another one. (Of course, not filing a lawsuit does not mean I can’t file complaints with her university and medical regulators.)

There are other excellent reasons not to pursue that route. For one, by taking legal action off the table, I occupy the moral high ground. That allows me to slam Dr. Crawley and the CMRC for their awful behavior as much as I want.

For another, and here’s the real challenge, I would have to prove that Dr. Crawley’s false accusation has actually caused me harm. Dr. Crawley has had tremendous influence over the health and lives of people with ME/CFS, especially in the U.K., but she has no power over me. I cannot honestly argue that her behavior, however distasteful, has damaged my reputation, caused me anxiety or led to economic loss. On the contrary, she’s given me great material to blog and talk about, complete with an excellent slide-show that documents her unprofessional behavior. Going forward, this stunt of Dr. Crawley’s and the resulting visuals are likely to haunt her career and inflict permanent damage on her reputation.

Now If I were to suffer a renal emergency in the UK and no nephrologists would see me because they had heard Dr. Crawley’s false accusation of libel, then I might be able to argue that I had suffered actual damage. Until then, no. (I do have a history of kidney stones and I am coming to the U.K. soon, but I don’t think she‘s gotten to the urologists yet.)