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

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.

Comments on this entry are closed.

  • Anil van der Zee 3 May 2017, 7:38 am

    Ouch. That was hot

  • AndyPR 3 May 2017, 7:45 am

    Great response David, thank you for speaking out for all of us patients, and showing up the BPS crowd for the fake scientists that they are.

  • Scott Simpson 3 May 2017, 7:48 am

    You are so awesome David. Thank you from the bottom of my being, for being a sharp, snarky and obnoxious voice exposing the scientific corruption by Crawley and crew. One day Hollywood will create a film about how ME patients have been harmed by this systemic bias for decades and the world will know and be shocked. You will be a key character in that narrative. Thank you.

  • Lady Shambles 3 May 2017, 8:07 am

    Thank you for this. I would like to ponder the possibility that the OMEGA petition which directly opposed the MEGA proposal might also have been one part of the decision making process of Wellcome to reject that initial proposal? Most senior members of Wellcome individually received news of that petition.

  • Joan Byrne 3 May 2017, 8:21 am

    I think the term I’m looking for is ‘slam-dunk’. Once again David, thank you so much for your persistence, resistance and insistence. They are the three greatest qualities that any honest broker can hold. I was absolutely gob smacked to see the slides that this person put on display at the Renal Conference. My jaw didn’t close for days. At the very least her judgement is seriously questionable if she thought she could put together those slides and get away with what she said. That is not how true professionals behave, it simply isn’t. My jaw is now firmly back in place having read your response and you absolutely deserve an explanation from those people you have contacted as to how this happened and what they are now going to do about it. What she did is very serious indeed and you and Virology Blog need redress.

  • Simone 3 May 2017, 8:24 am

    Thank you once again, David, for cutting through the nonsense of the Wessely school’s false illness beliefs (I understand there is an excellent treatment for that condition). HMS PACE has taken on a whole lot of water, and is going down, but the trusty crew are still manning the pumps and paddling like mad to keep her afloat.

  • Katie 3 May 2017, 8:58 am

    I think I may love you…

  • Robert McMullen 3 May 2017, 9:42 am

    Thank you, once again, David. It’s such a relief to have you and your colleagues speaking out on behalf of patients and against the real anti-science. I really hope that Dr Crawley tries to sue you!

  • Paradigm Change 3 May 2017, 9:51 am

    The antics of the folks on the other side of the pond are understandable considering how quickly their whole body of work has become discredited but nonetheless are ridiculous.

    Thank you for your work, David.

    Lisa Petrison, Ph.D.
    Paradigm Change

    P.S. Paradigm Change has just launched a new website called “Myalgic Encephalomyeltiis” consisting wholly of factual information appropriate for scientists, physicians, journalists and others who have come to be interested in this disease. Please consider checking it out.

    http://www.paradigmchange.me/me/

  • Kathy 3 May 2017, 10:01 am

    Thank you so much for your tireless work on this and your commitment to truth in science. When the flaws in the PACE study were exposed I never imagined that anyone would continue to attempt to defend it. I certainly never dreamt that the effort to defend it would stoop to include sullying the reputation of those seeking to extract neccesary truths from it. It says a lot about the ground PACE supporters find themselves on and casts worrying aspirtions on their motivation. You have shone a light at the heart of darkness here and thank God for you. You have my profound gratitude as someone ill for 30 years and who also suffered extreme consequences from physical therapy intended to help at age 13. You and those working alongside you on this are the best chance of it not happening to anyone else.

  • Art Vandelay 3 May 2017, 10:11 am

    Thank you once again, David. In my view, this episode demonstrates that Crawley and her cabal of pseudo-scientists are getting more and more desperate.

  • Maggie Wallace 3 May 2017, 11:11 am

    Wow, that’s telling her how it is! LOL! Thank you very much for your very great help to we vexatious and threatening patients. Best wishes from Liverpool UK. 🙂

  • Jo Best 3 May 2017, 11:28 am

    I’m slow on the uptake, so the penny’s just dropped that your article on this blog about FITNET-NHS was specifically referenced in the letter to Mainstream Research Funders enclosing the Opposing MEGA petition. I don’t know if Wellcome took those points into consideration in their decision, but they were specificially directed to the information. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs/u/19240607

  • Jo Best 3 May 2017, 11:29 am

    I wondered that and then remembered that David’s article on this blog about FITNET-NHS was specifically referenced in the letter to Mainstream Research Funders enclosing the Opposing MEGA petition. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs/u/19240607

  • afcone 3 May 2017, 11:32 am

    Thanks David for your excellent work on this. With this week’s mention of PACE on Retraction Watch, I sense yet again that the ground is continuing to shift on this trial and on the causes of ME/CFS.

    This may put me at odds with some patients but I am sad that the MEGA trial didn’t go ahead. Yes, there is some duplication with the ME/CFS Biobank but it’s not guaranteed that if MEGA didn’t occur the Biobank would immediately get extra funding instead. The involvement of some of the PACE team did raise concerns, but personally I felt there were enough other participants to avoid preconceived trial findings. I would welcome a 10,000+ cohort study that would allow large-scale metabolic testing and immunotyping.

  • Christina Omorochoe 3 May 2017, 11:41 am

    Victim mentality, or victim identity, is a recognized personality disorder which would probably respond to treatment with CBT or DBT. Physician heal thyself.

    Thank you David Tuller and Vincent Racaniello for continuing to value and promote science and truth.

  • Brenda Vreeswijk 3 May 2017, 12:07 pm

    Can’t thank you enough for your excellent work David, but maybe I’m biased as a “vexatious” ME patient which apparently I’m if I’m questioning research like the PACE-trial. I was told there was a very good therapy for that…and if that doesn’t work..you were not motivated enough, or wasn’t supported enough by your partner, or neighbor or the neighbors cat.

    To be continued I guess…

  • Diane Kirk 3 May 2017, 12:12 pm

    Thank you again David for your persistence. It is a serious matter to be called libelous. How incredibly unprofessional of Crawley.

  • Lydia Neilson 3 May 2017, 12:44 pm

    I agree with Scott Simpson. It is unfortunate but the reason that more attention is paid to the plight of those ill with ME and/or FM is simply because of the strong advocacy by people like yourself. I have noticed a very big difference in attitudes by the general public and by the medical professionals we are in contact with. Diplomacy and tact sometimes has to be put aside in order to get a message across. When we look back at our past, nothing was moving nor was anyone paying particular attention to the ME/FM community. It is by sheer force of word and perseverance that we are more and more in the news which leads to being listened to as they cannot shut the door on us anymore. So thank you David for being there and for your caring.

  • Barry 3 May 2017, 12:54 pm

    Excellent exposé of the PACE PR-machine’s latest stumble into a web of its own making. Sometime soon the establishment will have to acknowledge what is in front of its nose – the truth. Huge thanks David.

  • Alex 3 May 2017, 12:59 pm

    Thank you for fighting on our behalf! The patient community is extremely grateful for your work.

  • Barry 3 May 2017, 1:06 pm

    I also am sad in many ways that it couldn’t, but personally cannot support a project unless confident all the researchers on the team have a track record of good-science research practices – house built on sand otherwise.

  • SerendipitiousJules 3 May 2017, 1:20 pm

    Thank you for your tireless work David. Your response, to being accused of liable, is spot on. Where there is truth, there simply cannot be liable. Kindest Regards to you. Jules

  • Lady Shambles 3 May 2017, 1:28 pm

    That’s very true. I think the impact of OMEGA shouldn’t be overlooked. After all at this very moment in time 3177 people felt moved to sign the petition and very many of those were concerned and motivated enough to comment at the petition site. I think it’s a shame David Tuller hasn’t acknowledged this clear evidence of widespread concern by the ME Community in the blog post above. Other than that I’m very glad he has brought the rather peculiar ways in which Esther Crawley works to the attention of a wider public.

  • afcone 3 May 2017, 2:18 pm

    That’s fair enough and I do see your point. I felt that provided those accessing the data for research were from a wide range of fields then having a few of the PACE group involved in getting funding and it off the ground was a necessary fly in the ointment. The ME/CFS Biobank is awesome, but for such a heterogeneous condition we need more data, more samples, more statistical significance. In any case, I still welcome the CMRC and seemingly increasing wider interest in looking again at the aetiology of ME/CFS.

  • Tim Heatley 3 May 2017, 2:38 pm

    It would be good if the case did go to court as the publicity would do absolute wonders for our cause and so perhaps the PACE team should be actively encouraged to sue. They would surely not use public money again to hire lawyers. A retraction of the article from them would obviate this need but is it really likely to happen. As David says, his defence would be “justification” and he would have no problem in proving that. I think these people have to examine their motives for the work they do and show a bit of humility.

  • Elle See 3 May 2017, 4:46 pm

    Once again, heartfelt thanks for the work you’re doing on behalf of #PwME (People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)!

  • mesupport 3 May 2017, 5:14 pm

    I would much prefer that David and Vincent get lawyered up seeking redress from Esther than waiting for her response which is usually whatever the science media centre tell her it should be

  • Dr_Paul_1955 3 May 2017, 6:08 pm

    The PACE merchants have been caught well and truly with their trousers down — and they do not like it! But I’m afraid that we might have a long fight with them.

    When careers, reputations and — yes — egos have been built up over decades, when people are widely regarded as experts in their field and are cited in the popular media and learned journals alike as reliable authorities, then all this would be put in jeopardy were they shown to have long been barking up the wrong tree. Bang goes their reputations — and not merely in the disputed field, as their work in other fields of research would become subject to critical probing.

    In many academic areas, the results of this kind of obdurate behaviour can affect the career of an individual academic. Having a paper not published, a job application rejected or a PhD award delayed is annoying, distressing even, for the person concerned, but it goes no further. I have seen this several times in my academic field of history. When it has a serious knock-on effect upon substantial numbers of people — say, for example, the health of several hundred thousand people, and their treatment by medical professionals and by the welfare system — then it is a matter of great importance.

    The debunking of the findings of the PACE trial, along with the idea that CBT and GET are of great benefit for people with ME, surely should make the ‘it’s all in your head’ brigade seriously reconsider their insistence that ME is primarily a psychological problem. Scientific rigour and integrity should be enough to encourage the believers in this analysis now to re-examine their ideas and to reject anything that has been scientifically rebutted. A not inconsiderable number of people in this country are keen to know whether they will choose science or dogma.

  • leelaplay 3 May 2017, 6:27 pm

    Crawley’s going to have some splaining to do! Great blog and follow-up with the Renal Society, CMRC, and Crawley. Have you also informed MEGA participants, Crawley’s employers, and Wellcome Trust and any other common funders of hers of her behaviour, asking if they condone it?

    On another note, my sense was that she had been asked by the British Renal Society to give a lecture on how to keep data private and not meet FOI requests for data.

  • Jane colby 3 May 2017, 7:03 pm

    We at Tymes Trust, the UK’s charity for children with ME and their families, were delighted to present David with the Tymes Trust Award For Scientific Journalism in 2016 at the House of Lords in the Palace of Westminster. We clearly made the right call. We salute your bravery and integrity David – not to mention your sublime prose!

  • Paul Watterson 3 May 2017, 7:37 pm

    If it was really libellous (i.e. untrue) you can bet she would be suing you. The fact that she is not speaks volumes. You have said nothing untrue.

  • Paul Watterson 3 May 2017, 8:09 pm

    What galls me is that the researchers are so willing to keep on barking up the wrong tree in order to protect their reputations and egos when as you say it “has a serious knock-on effect upon substantial numbers of people — say, for example, the health of several hundred thousand people, and their treatment by medical professionals and by the welfare system “.

    They are recommending the wrong approach and treatment (and diverting much needed funds away from the biological research to their own flawed and fraudulent efforts), indeed making many people worse as exercise exacerbates their condition. But the egos of these researchers is more important to them than potentially causing harm to hundred’s of thousands of people. This is shocking. How can they sleep at night?

    So it’s not just science and dogma, it’s integrity and well….evil. If we define evil as putting your own ego before the health of thousands of people.

  • Luke 3 May 2017, 8:59 pm

    Esther Crawley has in fact libelled you, David. Nothing you said was libel.. so by her saying or suggesting you libelled her to her audience.. when you did not.. it is in fact a lie about you… and is libel itself. Or is presenting slides to a bunch of people about how someone is libelling you when they actually aren’t… not considered a blatant lie somehow? Maybe she doesnt know what dishonest behavior is… i mean she was a scientist on a team who changed the recovery criteria of the study after it begun but then did not publish what the results of the study would of been under the original criteria in the interests of being open and honest and scientific and forthright with BOTH sets of the results.. both the ones which confirmed her hypothesis and disconfirmed it… in the way youd expect a scientist to behave. After all… arent scientists meant to be interested in discovering truth and publishing all data and not just data that validates their hypothesis?

    How long until main stream media and the scientific community at large gets wind of all this? How much longer will this poor study be passed off as good science and not only harm patients… but harm the public’s faith in science.

  • Adrienne Wooding 3 May 2017, 9:37 pm

    Thanks for all your help David. All we want to sound objective science. We are so grateful for you adding your professional voice to our cries for “evidence based” science in the ME/CFS field.

  • Adrienne Wooding 3 May 2017, 9:43 pm

    The ME/CFS Biobank where invited to submit a full application, they will do it correctly and have patient support. I’m sure that the Welcome Foundation took into account patient support for the ME/CFS Biobank and patient angst about MEGA as detailed in OMEGA.

  • John Leslie Whiting 3 May 2017, 10:59 pm

    Hear, hear

  • John Leslie Whiting 3 May 2017, 11:08 pm

    Well said

  • John Leslie Whiting 3 May 2017, 11:12 pm

    I think you are very likely to be right on in regard to your last point. She had to have been asked. I cannot see any other reason. Yes, exactly.

  • Jo Best 4 May 2017, 2:18 am

    I think ‘seemingly’ is the operative word there. The CMRC looked from the start to be a vehicle to drive forward the biopsychosocial movement. There was already (and is ongoing) wider interest among UK scientists in looking at the aetiology of ME/CFS by embarking on a strategic programme of translational biomedical research before the CMRC was set up in 2013. These scientists are highly regarded in their own fields and working with colleagues in productive collaboration at an international level. The CMRC is entitled to pursue its own agenda of course, but it is not the driving force for UK research into ME/CFS.

  • Not this again 4 May 2017, 2:30 am

    With all the twists and turns we’ve seen in this ugly, cruel saga, this is possibly the most outrageous, and that’s saying something. It’s so bizarre that if one didn’t know it was for real, one would have to wonder if it weren’t some perverse form of satire, of self-parody, of performance art. When Suzy of Dx Revision Watch pointed out years ago that Esther Crawley was going to actually conduct a trial of the Lightning Process on children, it was almost impossible to believe something so obviously ghoulish, but as time goes on she keeps topping herself.

    Is there a legal case here? I sure hope so. The opportunity to see someone who would slime incredibly sick people with a slide insinuating we’re likely to have come from backgrounds rife with issues such as substance abuse and…crime? Really? This is a person in any kind of position of authority? Who received invites to medical conferences to explain in detail how to avoid complying with FOIA requests?

    If anyone ever doubted what these people think of us, she’s done us the great favor of being honest about it. It’s just hard to believe, what we’re witnessing due to the work David has done, with the key assistance of Professor Racaniello, not to mention everyone else who’s contributed to the exposure of PACE as a disgusting, dangerous fraud.

  • Jo Best 4 May 2017, 2:35 am

    I don’t think Esther Crawley was a scientist on the PACE trial (if that’s the study you mean) but her MAGENTA trial in children/teens follows from the PACE trial and is partly ‘justified’ by words to the effect that ‘we know from the PACE trial that GET works for adults and now we need the evidence that it works for children’. So research funding she is currently receiving is based on a sham. Mainstream media in UK is guided by the Science Media Centre, which coached Esther Crawley and colleagues: http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
    The story was picked up by independent media in UK: https://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/

  • Jo Best 4 May 2017, 3:17 am

    I have been housebound by ME for the past eight years and will be looking forward to the Invest in ME Conference DVD, not least to your libel-free pre-conference dinner presentation David! http://www.investinme.eu/IIMEC12-news-Pre-ConferenceDinner.shtml

  • vagrant 4 May 2017, 3:27 am

    The passengers have assembled on deck to listen to a pep talk from the captain…
    http://www.johnglashan.com/bk_perpetual.html

  • Luke 4 May 2017, 6:57 am

    Thanks i edited my comment.

  • Janet Dafoe 4 May 2017, 7:44 am

    Another fantastic piece, David! Thank you!

  • Nic 4 May 2017, 8:14 am

    I can’t believe that she’s gone so far as to assign the title of “libel” to a purely scientific disagreement…oh wait, actually I can, given some of the shenanigans covered in the Information Commissioner’s report.

    So anyway, Dr Crawley assigning malicious motives to a professional disagreement, and falsely accusing you of committing character defamation, in a speech to a group of professional people who have no reason to doubt her negative assessment of your character…wouldn’t that be slander? And actionable under UK law?

  • Nic 4 May 2017, 8:26 am

    You know what the PACE Trial has reminded me of from the start? The naked emperor from the fairytale, parading about in the knowledge that his clothes are so amazing that only intelligent people can see them and any nay-sayers are just idiots to be ignored (and he’s not going to admit that he’s starting to doubt himself and all his rationalisations are starting to sound hollow, because he’s got too much staked on this to be wrong).

    Long live all the people willing to openly say: “Psst…the emperor’s got no clothes!”