• Skip to main content
  • Skip to primary sidebar
virology blog

virology blog

About viruses and viral disease

libel

Trial By Error, Continued: ME Research UK Drops Out of CMRC

22 May 2017 by David Tuller

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.

**********

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.

Filed Under: Commentary, Information Tagged With: CFS/ME Research Collaborative, chronic fatigue syndrome, CMRC, libel, libelous, mecfs, myalgic encephalomyelitis, PACE

Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther

15 May 2017 by Vincent Racaniello

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.

*****

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.)

Filed Under: Commentary, Information Tagged With: CFS/ME Research Collaborative, chronic fatigue syndrome, CMRC, libel, libelous, mecfs, myalgic encephalomyelitis, PACE

Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”

10 May 2017 by Vincent Racaniello

by David Tuller, DrPH

Well, not in those words, of course. It was all very polite. But that was the message.

Here’s what happened. On Monday, I posted an open letter to the members of the board of the CFS/ME Research Collaborative. The letter involved the false accusation of libel that the CMRC’s deputy chair, Esther Crawley, disseminated against me at a conference of renal experts two weeks ago. Because the accusation involved a blog post I wrote for Virology Blog, the accusation of libel also extended to Dr. Racaniello, who hosts this site.

I sent a link to the open letter to Stephen Holgate, the CMRC’s chair, and other members of the collaborative’s board. Dr. Holgate is a public supporter of Dr. Crawley’s work—he appeared with her at a press conference organized by the Science Media Centre to promote her latest venture, FITNET-NHS, a trial of online cognitive behavior therapy for adolescents with ME/CFS. (I wrote about this flawed proposal in the purportedly libelous blog that Dr. Crawley displayed on screen during her infamous presentation to the British Renal Society. In that post, I criticized Dr. Holgate for supporting Dr. Crawley’s research, given that she has a tendency to conflate “chronic fatigue” and “chronic fatigue syndrome”).

I did not hear back after e-mailing the link to the open letter. However, Dr. Racaniello received a cryptic response from Dr. Holgate, apparently in error. It popped up in his in-box shortly after I sent my e-mail about the open letter to Dr. Holgate and other CMRC board members. After receiving my e-mail, Dr. Holgate sent the following message to the CMRC board members:

Friends, I hope you do not feel it necessary to respond to this.

Kindest Regards,

Stephen

I had cc’d Dr. Racaniello on my original message; I presume that’s why he received a copy of Dr. Holgate’s e-mail. I wrote to Dr. Holgate, asking if he sent the e-mail to Dr. Racaniello in error, or if it was an indirect way of letting us know the CMRC would remain silent. I soon heard back from Dr. Holgate. He explained that the questions I have raised “are not the business” of the collaborative, which after all is a “voluntary” group and has “no official standing.” He told me I needed to pursue any concerns through “other avenues.”

So that is the CMRC chair’s response to the news that his deputy chair falsely accused two other academics of libel at a professional gathering, at which she also appeared to be advising medical professionals on effective ways of avoiding their legal obligations under the freedom of information law. Dr. Holgate apparently feels this has nothing to do with the CMRC itself because it is just a “voluntary” group with “no official standing.” (What does that mean? “Official standing” with whom? The CMRC has enough “official standing” to organize conferences, issue statements, and have a board, which includes a deputy chair who makes false libel accusations  and a chair who doesn’t think that’s a problem.)

Apart from her defamatory libel claim, Dr. Crawley also appears to think that the filing of freedom of information requests related to ME/CFS is tantamount to conducting a harassment campaign. And she continues to make this ridiculous argument, even though last year’s First-Tier tribunal decision on one such request dismissed this claim in harsh terms. With all due respect to Dr. Holgate’s assurance that Dr. Crawley’s actions have nothing to do with the CMRC, Dr. Crawley’s leadership role with the group has been well promoted. It is natural for observers to assume that she speaks for many if not most of the other board members, especially when she talks about research into ME/CFS.

Unlike Dr. Crawley, the rest of the scientific world is moving fast in the direction of open access to data. Although Dr. Holgate believes the CMRC has nothing to say about Dr. Crawley’s recent performance, other board members should certainly speak up if they don’t agree with the deputy chair’s view that freedom of information requests constitute harassment. And if they don’t think Dr. Crawley should disseminate false accusations of libel against those raising legitimate and still-unanswered questions, they should speak up about that as well.

It is hard to understand why Dr. Holgate and the CMRC board think the public or funders should support a research collaborative whose co-leader falsely accuses critics of libel and publicly advocates shielding trial data from scrutiny. I do hope Dr. Holgate and his colleagues find a way to improve on their current non-response going forward.

Filed Under: Commentary, Information Tagged With: CFS/ME Research Collaborative, chronic fatigue syndrome, CMRC, libel, mecfs, myalgic encephalomyelitis, PACE trial

Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative

8 May 2017 by Vincent Racaniello

by David Tuller, DrPH

To Members of the Board of the CMRC:

Not long ago, at the annual conference of the British Renal Society, your deputy chair disseminated the false accusation that I had libeled her. As a corollary to that, she also disseminated the false accusation that Dr. Racaniello, the Columbia University microbiologist who hosts Virology Blog, had libeled her by publishing my work. I provided Dr. Crawley with a reasonable opportunity to offer either an explanation, evidence to support her serious charge, or an apology. Dr. Crawley has done none of these things.

I interpret that as Dr. Crawley’s admission that there is nothing in my blogs that needs correcting, and therefore nothing libelous. Yet her claim, which goes to the heart of my integrity and professional reputation, remains floating around out there in the ether. Slides that go viral live online forever. (Dr. Crawley’s lecture, of course, raises other concerns as well. For the moment, I am focusing on the one that involves me.)

I have no reason to believe this is the first time Dr. Crawley has made these reckless charges against Dr. Racaniello and me. She has probably stirred many audiences with her tales of courage in confronting “anti-science” zealots. However, I have no evidence of that, so I will pretend to believe this was an isolated episode. But I would be very, very unhappy to learn that Dr. Crawley has continued making such unsupported allegations. (Why was Dr. Crawley invited to talk to a group of kidney specialists, anyway? Can cognitive behavior therapy and graded exercise therapy now cure kidney disease just like they can cure ME/CFS?)

Although Dr. Crawley’s accusation is libelous and possibly actionable, I have no intention of suing her, as I have already indicated. But I do believe in moral closure. Dr. Crawley has so far failed her moral, ethical and professional obligation to rectify the situation. Given that she is the CMRC deputy chair, her unwillingness to clean up her mess also reflects poorly on the collaborative. Although I have conveyed my concern to you, I have heard nothing from the board. Perhaps I’ll hear something at some point in the future. But in not disavowing Dr. Crawley’s accusations in a timely manner, the CMRC is effectively endorsing and enabling her behavior, as well as allowing these falsehoods to continue to percolate among medical professionals. Your silence, like Dr. Crawley’s, is not acceptable to me. Nor is it acceptable to Dr. Racaniello.

On June 1st, I am honored to be giving the keynote presentation at the dinner before this year’s Invest in ME conference. I was planning to talk about PACE, and why it is–in my opinion—an incoherent pile of nonsense. I had not planned on talking about Dr. Crawley or the CMRC. Thanks to Dr. Crawley’s attention-getting performance, my plans have now obviously changed. I will of course still discuss PACE’s failings. But I’ve never been accused of libel before, so I’m eager to share the experience with colleagues.

Plus, Dr. Crawley herself has provided fantastic visuals: There she is on stage, and behind her looms an enormous slide that features, among other items, the phrase “libellous blogs” and a screen shot of one of my Virology Blog posts, along with my name. Slam dunk! Here I am, about to give a high-profile talk in front of top scientists and ME/CFS experts from around the world, and the cosmos gifts me with a slide that captures a researcher in the very act of slandering me! Even better, she happens to be a researcher very well-known to many if not all in the audience, by reputation if not in person! How cool is that? Small world!

In my talk, I will portray Dr. Crawley’s accusation as an example of the scare tactics employed by scientists unable to provide satisfactory and adequate explanations for their methodological choices. In Dr. Crawley’s case, as I reported in the purportedly libelous blog captured immortally on screen, these troubling choices include the routine conflation of “chronic fatigue” and “chronic fatigue syndrome.” That conflation dramatically inflates the reported prevalence of the illness and leads to all kinds of problems.

Dr. Crawley and other PACE cheerleaders, not to mention the PACE investigators themselves, are similarly unable to provide logical answers to key questions like: “How was it possible that 13% of the PACE participants were already ‘recovered’ on one or both primary outcomes at baseline, before any treatment at all? Why was this key information not included in the published papers? Why were these participants even in the trial in the first place?” It is easier to accuse me of libel than to answer these prickly questions.

Dr. Crawley also showed a slide of the patient petition campaign against the MEGA project. Perhaps she believes that the Wellcome reviewers were negatively influenced by this organized opposition when they rejected her preliminary application. That could easily be the case, although it is also possible, as I noted earlier, that the MEGA proposal was simply not up to Wellcome’s exacting standards. Unfortunately for Dr. Crawley going forward, this most recent incident and the viral photos of her “anti-science” lecture are likely to stick to her and her professional reputation like glue. Through an easy google search, prospective colleagues, collaborators, grant reviewers and major funders will likely learn that she has accused other researchers of libel without explaining herself, providing any evidence, or apologizing.

It is also troubling that Dr. Crawley has, once again, positioned the filing of requests under the U.K.’s freedom of information (FOI) law as part of the “anti-science” playbook. Her slides on “vexatious requests” and other FOI exemptions suggest she was schooling the nephrologists in the most effective ways to sidestep the law’s requirements and avoid legal obligations to provide documents and information. I wonder if the University of Bristol believes it is appropriate for Dr. Crawley to be disseminating such advice. I doubt very much she informed the nephrologists that the most high-profile decision on a FOI request related to PACE, from the First-Tier Tribunal last summer, demolished the argument that the request was “vexatious.”

In ordering the liberation of the raw, anonymized trial data, the First-Tier Tribunal also noted widespread concern in the scientific world about the PACE trial’s irregularities. In particular, the decision cited an open letter to The Lancet and its editor, Richard Horton, that I organized last year. That letter, posted on Virology Blog, was signed by dozens of leading scientists and clinicians, who wrote that the PACE trial’s flaws “have no place in published research.” An open letter to Psychological Medicine, posted in March and demanding retraction of the PACE “recovery” paper, was signed by more than 100 experts. In other words, any suggestion from PACE defenders that only “anti-science” patients are challenging this body of deficient research is demonstrably untrue.

The First-Tier Tribunal also found no evidence supporting the PACE investigators’ hyperbolic claims of being the victims of a campaign of harassment, although the ruling acknowledged that Trudie Chalder had been heckled somewhere. Let me reiterate this critical point: The expensive lawyers for Queen Mary University of London, representing the interests of the PACE team to the best of their august abilities, presented NO CONVINCING EVIDENCE that the investigators were subject to abuse and death threats. (Having said that, I have no doubt that Dr. Crawley and other researchers have received many distasteful, hostile e-mails. While that is deeply unfortunate, it is no excuse for the persistent refusal to acknowledge flaws in the research.)

Moreover, as a result of the court order demanding release of the data, everyone can now see what was obvious to patients long ago: The PACE investigators changed their endpoints mid-stream in ways that jacked-up their reported rates of “improvement” and “recovery.” Then, when patients wanted to see the results per the methodology promised in the protocol, the PACE investigators stonewalled and called those requesting the data “vexatious.”

At first, the “vexatious” meme worked for the PACE team. But not anymore. The First-Tier Tribunal saw right through it. The scientific case against PACE has now been documented in peer-reviewed journals, and more publications are on the way. Dr. Crawley might not have liked the First-Tier Tribunal decision. She can misrepresent the results of the reanalyses of the PACE trial data, as she did in an interview several months ago, and continue to hail PACE as a “great, great” trial. But invoking “vexatiousness” at this stage, after the tribunal ruling and publication of the reanalyses, is not a viable strategy.

Dr. Crawley has failed to notice that the situation has shifted dramatically in the past two years. Top scientists outside the bubble-think of CBT/GET adherents have scrutinized the PACE study, found themselves shocked at its deficiencies, and confirmed that the reported results are bogus. They have made their views public to demonstrate the depth of their convictions about the study’s flaws. Does Dr. Crawley consider all of them “vexatious”?

It is understandable the CMRC board would prefer to hunker down and ignore the growing public relations disaster that Dr. Crawley has created. But your group has already stumbled multiple times in its efforts to gain credibility with the patient community, not to mention with funding bodies like Wellcome. You don’t have many chances left, if any. Dr. Crawley’s viral cri de coeur against patients (and others) seeking the truth about PACE represents another black mark for the organization.

Ignoring Dr. Crawley’s behavior or letting the matter drag on for weeks and months is not a recommended strategy. With no explanation or apology for your deputy chair’s actions anywhere in sight, the CMRC’s reputation is sustaining serious ongoing damage. My best advice is to behave like responsible scientists and address the matter of Dr. Crawley’s unjustified public accusations against Dr. Racaniello and me. Enough is enough.

Best—David

David Tuller, DrPH
School of Public Health
Graduate School of Journalism
University of California, Berkeley

Filed Under: Commentary, Information Tagged With: British Renal Society, chronic fatigue syndrome, libel, mecfs, myalgic encephalomyelitis, PACE trial, vexatious

Trial By Error, Continued: My Libelous Blogging on Virology Blog

3 May 2017 by Vincent Racaniello

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.

Filed Under: Commentary, Definitions Tagged With: British Renal Society, chronic fatigue syndrome, Esther Crawley, libel, mecfs, myalgic encephalomyelitis, PACE

Primary Sidebar

by Vincent Racaniello

Earth’s virology Professor
Questions? virology@virology.ws

With David Tuller and
Gertrud U. Rey

Follow

Facebook, Twitter, YouTube, Instagram
Get updates by RSS or Email

Contents

Table of Contents
ME/CFS
Inside a BSL-4
The Wall of Polio
Microbe Art
Interviews With Virologists

Earth’s Virology Course

Virology Live
Columbia U
Virologia en Español
Virology 101
Influenza 101

Podcasts

This Week in Virology
This Week in Microbiology
This Week in Parasitism
This Week in Evolution
Immune
This Week in Neuroscience
All at MicrobeTV

Useful Resources

Lecturio Online Courses
HealthMap
Polio eradication
Promed-Mail
Small Things Considered
ViralZone
Virus Particle Explorer
The Living River
Parasites Without Borders

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.