Trial By Error: My Brief Encounter with Professor Crawley

By David Tuller, DrPH

At noon last Friday, at the University of Exeter’s Mood Disorders Centre, Professor Esther Crawley gave a talk called “What is new in paediatric CFS/ME research.” When I saw a notice about the event the day before, I felt it might be my one chance to ask her directly about her concerns regarding my work and her accusation that I was writing “libellous blogs.” (If she were American, she would presumably have accused me of writing “libelous–one L–blogs”).

I also hoped to gain insight into some other issues that have troubled me: why she still believes PACE was a “great, great” trial, why her prevalence studies use “chronic fatigue” as a proxy for “chronic fatigue syndrome,” why she is not concerned about bias given that she conducts non-blinded studies relying on subjective rather than objective primary outcomes, etc.

So many questions!

I’d heard that Professor Crawley is a compelling presenter with a strong dose of what many characterize as charm. This, I found out, is true. Unfortunately, she compellingly and charmingly presented a series of misleading arguments. The talk did not include any discussion of the obvious: that the biopsychosocial approach she has championed is losing ground rapidly, both internationally and in the U.K. Instead, she claimed that 22 percent of adults “recover” with treatment–without citing the reanalysis of the PACE trial data that demolished that claim.

She stated that two percent of teenagers have what she calls “CFS/ME”—even though other experts, like Johns Hopkins pediatrician Peter Rowe, consider this estimate to be wildly inflated because it is based solely on reports of chronic fatigue, with no clinical examinations to rule out other causes and no evidence of post-exertional malaise. She referenced the 2007 NICE guidelines, which she helped develop, as support for the rehabilitative treatments she favors–without mentioning that NICE has rejected the advice to reaffirm those guidelines and is instead planning a “full update” to replace the current version.

Professor Crawley did not explain why her much-hyped MEGA project, sponsored by the CFS/ME Research Collaborative, failed in major bids for funding from both the Wellcome Trust and the Medical Research Council. Also unmentioned was the U.S. National Institutes of Health’s decision to grant $2 million to MEGA’s rival, the highly regarded U.K. ME/CFS Biobank. At the CMRC conference in September, before the announcement of that NIH grant, Professor Stephen Holgate, the CMRC chair, had spoken with hopeful enthusiasm about an upcoming meeting with the U.S. agency.

Poor Professor Holgate. He appears not to understand that Professor Crawley might have caused irreparable damage to her professional reputation with some of her recent behavior, such as accusing legitimate critics of being vexatious and libelous and appearing to advise other researchers on how to evade their obligations under the U.K.’s freedom of information laws. Perhaps Professor Holgate also does not realize how much the CMRC itself might have undermined its own credibility by its willingness to overlook and condone such antics.

And perhaps he and Professor Crawley are not aware that U.S. health officials interested in ME/CFS, not just patients and advocates, might sometimes read Virology Blog to keep current with developments in the field. The American public health establishment has now rejected the PACE trial; this summer, the Centers for Disease Control removed the recommendations for GET and CBT from its website. Scientists who passionately defend the “greatness” of PACE and refuse to acknowledge that it has been effectively debunked should therefore not be too surprised if U.S. agencies reject any funding requests.

In her Friday talk, Professor Crawley failed to mention new research documenting significant physiological dysfunctions among patients, such as the recent Newcastle University study indicating defective energy production in the mitochondria. She talked mostly about her own research but didn’t explain why anyone should trust open-label trials with subjective outcomes, like FITNET-NHS, her online CBT trial for kids. When she discussed her recently published SMILE study of the cult-like Lightning Process, she didn’t mention that even Action For ME, her close ally among the patient advocacy groups, raised real concerns about the trial and its findings.

Professor Crawley repeated the tiresome meme about the “harassment” purportedly faced by researchers in the field, supporting her point with screen shots of some of the overwrought and anti-patient articles that have appeared in the U.K. press in recent years. She did not mention that the First-Tier Tribunal last year sharply dismissed claims that patients had engaged in a campaign of threats against the PACE investigators. On a positive note, I’m pleased to report that Professor Crawley has apparently retired the slide that accused me of writing “libellous blogs.” Perhaps Bristol’s lawyers have informed her that making such a reckless, unsupported charge in high-profile public venues, including her inaugural lecture, puts her on slippery legal ground.

Last spring, after I first learned about the libel accusation, I e-mailed Professor Crawley repeatedly, seeking an explanation. In my e-mails, I offered to post her full response to my criticisms, at whatever length she wanted, on Virology Blog. I also offered to correct any mistakes she could document–something I do routinely, as a responsible journalist, even when I am not being accused of libel. I stopped e-mailing her after it became clear that she had no intention of ever responding or explaining anything. As a courtesy, however, I made sure to keep her colleagues on the CMRC leadership committee informed by sending them my blog posts about her activities.

(Even at this late date, I am happy to re-extend to Professor Crawley my longstanding offer to post on Virology Blog her full response to my concerns, along with her documentation of any inaccuracies or errors that would justify her libel accusation.)

At her Friday event, Professor Crawley spoke for about 45 minutes. Then she stopped and waited for questions. I raised my hand and introduced myself. When she heard my name, she looked seriously glum.

“Hi, David,” she said.

“Hi, Esther,” I responded.

Then things happened quickly and in a bit of a blur, so my memory of events might not be 100 percent accurate. I started asking about the bogus 22 percent “recovery” figure. She interrupted and asked in a tone of some dismay if I’d come all this way just to see her talk. I told her that I was already in the U.K., and that I had friends in Exeter. Sensing that my time for asking questions might be cut off, I dropped the 22 percent issue and asked why she had accused me of libel and then failed to explain herself.

At that point, Professor Crawley indicated that she was going to stop the talk; I guess she doesn’t mind attacking critics from the podium but cannot tolerate their presence in her audience. She said that my work has been unbelievably “defamatory”–but, as in the past, she did not cite any errors or inaccuracies that would warrant such a label. She also declared, if I heard her correctly, that Bristol University had sent me a cease and desist letter on her behalf. That was certainly news to me.

In fact, at the Invest in ME conference in June, I had heard that Professor Crawley wanted Bristol to send such a letter. I wasn’t sure what exactly I was supposed to “cease and desist” from. Exercising my right, as a public health professional and journalist, to investigate and express my opinions about Professor Crawley’s research? In any event, I have never received a cease and desist letter from Bristol. (Maybe it got lost in the mail. The U.S Postal Service can be very inefficient. Note to Bristol University: E-mail is more reliable.)

After this quick exchange, the moderator of the event stepped in and suggested that we were engaged in a private dispute beyond the scope of the presentation. I noted that it was most certainly not a private dispute, since Professor Crawley had leveled her libel accusation in public. Next, the moderator asked me to leave. I stood up, grabbed my bag, and left without a fuss.

I assume there was a lively discussion afterwards. I also assume Professor Crawley will use this incident to once again portray those who disagree with her as belligerent and vexatious. To be clear: My question was by nature tough and presumably unpleasant for Professor Crawley, but I spoke in a calm and reasonable tone. Perhaps, in retrospect, I should have asked about the flaws in her own research or stuck with my 22 percent question. Whatever. In the end, I asked the question I really wanted to ask, so I felt I had attained my objective.

So what’s the upshot? I believe that Professor Crawley wants to bully those who raise concerns about her work into silence rather than engaging in robust debate about the very real methodological and ethical problems with her studies. She also refuses to acknowledge what many experts have now recognized: The GET/CBT treatment approach for ME/CFS, based on the deconditioning/fear-of-exercise hypothesis, is scientifically bankrupt and is crumbling under the weight of its own absurdity. This isn’t happening fast enough for me and the patient community, but the trajectory of developments is obvious.

At this juncture, it would be fruitless to make further efforts to engage with Professor Crawley, either via e-mail or by attending another one of her performances. She’s expressed her thoughts about my work, I’ve expressed my thoughts about hers, and we have no common ground. But I will, of course, continue to press my arguments and opine on her research and activities as I see fit. Stay tuned!

Comments on this entry are closed.

  • Olivia Rowe

    Crawley’s not on Twitter and to my knowledge this is the only time he’s turned up to one of her talks.

  • davetuller

    I’m sorry, Mark, but you are 100 % wrong. As one of the posters said, read paragraph 1.2.1.2 of the NICE guidance. PEM, delayed by 24 hours, is very clearly part of the definition of fatigue. I have a doctorate in public health from Berkeley, so I am a social scientist as well as a journalist–I am not a biological scientist. Moreover, I was not “fired” from my job at Berkeley. Many academics at the University of California–those not in tenured positions–are on outside funding (i.e. not from the state) or a mix of outside and state funding. When that money is scarce, as it is these days, positions are not funded and people need to figure out somewhere to pump money into the system. The School of Public Health backs my efforts on ME/CFS and was very happy to invite me to crowdfund into Berkeley so they could continue to employ me–when I came up with the funding, they were extremely happy not to lose me. I have offered Professor Crawley multiple opportunities to explain her objections to my work and point out what is wrong–there is no libel or defamation unless things are inaccurate. I offered to post her full statement on Virology Blog. She has refused to take me up on this offer. I have not “harassed” her or “abused” her, no matter what she feels about my writing. I have vigorously argued that her research is seriously flawed–as it very clearly is. She has responded by accusing me of libel rather than actually debating the specific points I have raised. My tone is completely beside the point. I have expressed myself aggressively because patients have expressed themselves politely for years and gotten no traction at all. If you, Mark, point out legitimate inaccuracies in my work, I am happy to correct them. The fact is, EVERYONE except you recognizes that PEM is a required symptom in the NICE guidance. After my “libelous” blog post, in fact, Professor Crawley amended her protocol for FITNET to make it clear that PEM is a required symptom–as it is in the NICE guidance itself. She did not give me credit for pointing out that this was NOT the case in her initial proposal. I suggest you check your facts before you accuse me of harassment and abuse.

  • Sandra

    From reports, it was noted that after Dr. Tuller’s departure, audience members questioned why ME/CFS patients would do this — question and object to the work of Esther Crawley, a purportedly “outstanding scientist” as stated in her introduction to the audience. Why, indeed? That is a very good question. Search for the answers to this and you will get to the heart of the problems that ME/CFS patients have faced for over 30 years:

    a takeover of this biomedical disease by psychiatrists and psychologists;

    incorrect assumptions and theories about “false illness beliefs” and fear of activity upon which they have built their careers;

    siphoning off and wasting of precious, scarce research dollars into foolish psychological research over and over again;

    spinning of results by the Science Media Center, the biopsychosocial researchers, and the media which inflate and exaggerate their claims leading to gross misperceptions of this disease by physicians and the general public;

    lack of money and focus on biomedical research into understanding the actual disease process, resulting in no effective treatments having been developed over all this time;

    false stories of death threats and other perils put out by SOME of these researchers (not the biomedical ones by the way) in order to cast blame on patients and deflect from their dubious theories of disease causation and harm caused by forcing energy impaired patients into CBT and GET;

    physicians not wanting anything to do with these patients because there is nothing with which they can help them, and they know they are not worth their care anyway;

    patients having to fend for themselves, often in the face of much hostility from others, including their physicians and sometimes even their own families;

    the BPS crowd ignoring and not acknowledging the biomedical research that has been done by others so far showing that this is a systemic organic disease affecting many body systems including metabolic problems in which cells cannot produce sufficient energy to maintain a normal life in these patients;

    patients truth about their own experiences being ignored and even belittled.

    I could go on and on, but you get the picture.

    I ask you: what if you were to find yourself, or perhaps your wife or child, caught in this very unfortunate dilemma, what would you do? Would you just quietly submit to these injustices and accept your fate as dictated by these powerful forces, or would you work to correct the situation and help yourself and your loved one? I know what I would do. I and the ME/CFS community know what Dr. David Tuller is doing. And that is why he has the full support of the ME/CFS community. And I sincerely thank him.

  • Mark Paine

    >Looks like is part of the diagnosis to me

    But not a required part, as you can see from your quote above.

  • Mark Paine

    Well as you can see from 1.2.1.2 it says “post-exertional malaise and/or fatigue”. I may not be a journalist like you, but I’m pretty sure “and/or” doesn’t mean the same as “and”, i.e. PEM is not required for diagnosis (as you claim in your diatribe).

    I understand it’s an easy mistake for you to make, so be a man and fess up and apologise to Crawley.

  • davetuller

    Mark, that needs to be read “post-exertional malaise and/or post-exertional fatigue.” As I interpret it, the “post-exertional” applies to both nouns–malaise and fatigue. That’s clearly the case, because even if it is “fatigue” it clearly is described as delayed 24 hours and taking a long time to resolve, as the sentence makes clear–that’s the definition of post-exertional. It’s not just regular fatigue. You are misreading it–and the fact that Crawley changed her protocol after my blog post to clarify makes that clear. You also wrote to Dr. Racaniello that I was mistaken about the newsletter. Read p. 6 of the newsletter. I never claimed the testimonials included mention of CBT and GET. I have always claimed that those testimonials would bias ALL participants in a positive direction–this is also not allowed. In my original series I pointed out that in addition to the testimonials, the newsletter contained an article about the 2007 guidance and claimed that CBT, GET and activity management were recommended based on “the best available evidence.” Clearly, the newsletter DID promote CBT/GET as effective based on “the best available evidence.” You can define my work as harassment and abuse. You are wrong. Esther has had every opportunity to provide me with evidence that something is inaccurate. She has chosen not to do that and instead accuse me of libel and defamation. Your claims of inaccuracy are simply wrong. I understand why you made that mistake but I have nothing to correct.

  • Mark Paine

    Yes, it looks like you’re correct, the post-exertional bit does apply to both nouns. However your original blog post is also incorrect in saying the “post-exertional malaise is required”, as it is not. You should have said “post-exertional malaise OR FATIGUE” is required. Crawley’s protocol was also wrong originally, in that she didn’t say the fatigue had to be post-exertional. It seems that has been corrected now.

    I still don’t think that warrants the amount of energy you’ve put into pursuing Crawley. To be honest it’s no wonder she’s completely ignoring you. You’re also not helping patients here by harassing researchers like this. It’s also pretty obvious that she isn’t conflating chronic fatigue with ME.

  • davetuller

    Mark–Are you seriously arguing that there’s a difference between “post-exertional malaise” and “post-exertional fatigue”? Seriously? It’s the same thing–they’re obviously using the two words interchangeably. It’s very obvious in her prevalence studies that she is identifying children with reports of “chronic fatigue” and calling it chronic fatigue syndrome–she says that herself!! She writes in her research that she uses reports of chronic fatigue as a proxy for CFS–clearly, she conflates the two. But she has presented no evidence to prove that this is a reasonable or reliable strategy. It is not. Her prevalence studies are therefore ridiculous and the statistics wildly inflated, as other experts have pointed out. The appropriate response for Professor Crawley would be to take me up on my offer to post her full response, uninterrupted, at whatever length, on Virology Blog–not to accuse me of libel and defamation. Something has to be inaccurate and in error for those terms to apply. Just because she doesn’t like my tone does not make something libelous. Science involves rigorous debate. She runs from that. She appears to feel she is exempt from criticism, for reasons that escape me. I reject your claim that I am “harassing” her–in my blogs or in my attendance at her lecture. It is ridiculous to claim that it is harassment or abuse to go to a public lecture and ask politely why I have been accused of libel without any evidence being provided. I have not, by the way, “pursued” her. I have criticized her work harshly because she has consistently rejected reasonable criticism presented by patients and others, and her work is so bad that it deserves harsh treatment. I am sorry you feel my work is not helping patients. As is obvious from the comments, many many patients disagree.

  • uab9876

    I read it as required since it says “All of the following features”. I really don’t see the ambiguity but I am used to specs which are very clear in their language and define words where necessary.

    Yes it is from the diagnosis section as I’m assuming that is where they define what is necessary to give a diagnosis!

    If the NICE guidelines lack clarity that of course reflects back onto Crawley who was one of the authors.

  • uab9876

    The and/or there refers to alternative naming for the same thing which is basically an increase in symptoms after exertion. Where doctors only recognize ‘fatigue’ as a symptom it is useful to describe post exertional fatigue to help. But fundamentally it is getting worse (often with a delay) due to exertion. If I remember correctly that was missing from the definitions being used by Crawley.

  • freecell0sd

    So you recognise that you were wrong there, and it also sounds like you have also been e-mailing Dr. Racaniello to make inaccurate complaints about Dr Tuller’s work… does that mean that you think that you have engaged in a campaign of nastiness and harassment (as you’ve put it)?

    Post-exertional fatigue is generally considered to be an aspect of post-exertional malaise, so it seems entirely unnecessary to spell that out whenever writing about it.

    There is something praiseworthy of your raising your concerns, and attempting to discuss them here, but the way you responded to Dr Tuller explaining your error is very disappointing. It seems that there are some people who are not used to engaging in meaningful debate, do not really know how to do so, and consider attempts to engage others in debate as some form of harassment. I do not see how, particularly considering the posts on this topics that you have made today, you can continue to try to portray Dr Tuller’s actions as any form of harassment.

  • Mark Paine

    There is obviously a difference between fatigue and malaise. Look it up in the dictionary! NICE wouldn’t have listed PEM as optional if it was the same as the required criteria (fatigue).

    I think you’re under some misunderstandings about CFS. The vast majority of patients diagnosed using the Oxford criteria have PEM, which you would know if you had looked at the science.

    The truth is that you’re not a real scientist. You just have your own pre-set agenda which you rant and rave about. Real scientists write letters to journals to critique each other’s studies.

  • uab9876

    The main issue with Fitnet is it is wasting £1m because it is only using subjective measures in an open label trial. Further to this the intervention aims to change how patients think about their symptoms. So subjective measures are simply meaningless. So the trial is just a waste of money as the methodology is not good enough to give meaningful results. The use of more objective measures would help but these have been shown not to produce the desired results in trials.

    There are other issues such as the failure to warn children of the potential dangers of GET. There are many patient reported side-effects from GET including from specialist centers. Crawley’s defense to the ethics committee was to quote part of a Cochrane report on GET but not the bit where they say safety data was lacking.

    So we have a pointless trial which also risks putting children into remission without warning them. That is the real issue.

  • davetuller

    You are wrong. In this context, they are using the terms interchangeably. You have to be deliberately dense not to see that. And I have no idea why you keep claiming that it is “optional” in NICE. 1.2.1.2 clearly states that the diagnosis should be considered IF ALL THOSE CONDITIONS ARE PRESENT–the last being the presence of “post-exertional malaise” or “post-exertional fatigue,” whichever you choose to call it. I haven’t claimed to be a scientist. I am a social scientist. I had no “pre-set agenda” when I started investigating the PACE trial. I tried to interview the PACE authors repeatedly and they refused to talk to me. Before embarking on this, I consulted with my epidemiology and statistics colleagues at Berkeley and Columbia and elsewhere–“real” scientists, per your definition, I suppose–who uniformly told me the trial was garbage and scientifically incoherent, which it is. One cannot be “disabled” and “recovered” on key measures at the same time, as happened in PACE. Your friend Professor Crawley thinks this isn’t a problem and that PACE is a “great, great” trial. That comment is preposterous and insulting to true scientists everywhere. The Lancet refused to publish a letter from 42 distinguished scientists that called the PACE trial unacceptable–that letter was specifically solicited by the Lancet editor and then turned down after they gave the PACE authors veto power over it. The UK journals are not honest brokers in this debate. They have been enablers of the CBT/GET paradigm, which has been debunked. The PACE trial is a piece of nonsense, as has been recognized now by the CDC in the U.S. and many top scientists around the world from Harvard, Stanford, Columbia, University College London, etc etc, who signed the open letters that I organized. Insulting me is just silly. Keep on doing it if you want, but this is the end of our exchange for me. I wish you well.

  • Elle See

    It is impossible to fathom how EC can still fundamentally misrepresent what MECFS is. Thank you David Tuller for standing up for what is right. People with MECFS need to be heard.

  • Peter Trewhitt

    You accuse Prof Tuller of making “lots of false accusations against people like Crawley” and assert he is being paid “to continue this nastiness and harassment”, but you give only one example relating to interpretation of the NICE guidelines, though after a number of responses finally agree you had misunderstood the relevant section of the guidelines..

    I would be interested to know which other of Prof Tuller’s arguements you consider ‘false accusations’ or ‘nastiness and harassment’. The only example of ‘harrasment’ you specify is his questions at this recent talk. How is asking relevant questions during an open Q&A session following a public presentation either nastiness or or harassment?

    Is academic debate nastiness? In this context it seems that you are the one making a false accusations intended to belittle Prof Tuller personally. In addition to an accusation of ‘nastiness’ which you do not support, you assert he was ‘sacked’ by the University that continues to host his work. What is the relevance of this false assertion to his critique of Prof Crawley’s research, unless it was intended to undermine his character through personal attack.

    Prof Crawley repeatedly asserts she and other ME researchers are victims of harassment, as you imply you have some knowlerge of this I would be interested in further examples, as in the Freedom of Information Tribunal the PACE researchers claims of harassment were dismissed by the judge, as Bristol University have no official record of harrasment of their staff and Prof Crawley’s published claims are in general non specific so difficult to evaluate. The only concrete example she has given recently was a slide of an annonymous letter she seemed to claim was sent to her, but in fact was a mock up created by a journalist several years ago in relation to someone else.

    Also are you not concerned at Prof Crawley’s history of attacking other people and organisations? For example there is her previous accusations of Prof Tuller and the Virology Blog as libellous though she has not attempted to answer a single point in the relevant posts. Further there is her accusation of the ME Association as being ‘anti science’ made on Radio 4, but even a cursory glance at their website and funding history indicates this to be obviously untrue.

  • uab9876

    @disqus_Em49VmkiZ8:disqus
    Perhaps you could quote evidence that the vast majority of patients diagnosed with Oxford have PEM. I think PACE found 56% also fitted their revised criteria which may be the closest and doesn’t seem like a vast majority.

    But perhaps the real issue is that treatments proposed by Pace and Crawley didn’t work on the Oxford patients or ones with PEM. Subjective measures are not sufficiently robust against the influences of interventions that are aimed at changing how patients conceive symptoms. The more objective measures didn’t back up the results for PACE.

    Patients have written letters to Journals. I wrote to Psychological Medicine pointing out factual errors in the PACE recovery paper. Unfortunately too many ‘real’ scientists are part of a closed shop and networks of friends.

    My research world is very different many people attack systems and publish blogs/code or go for bug bounties. It produces much more robust results as errors and failures need to be fixed before the criminals take advantage.

    Perhaps the ‘real scientists’ writing to journals who ignore errors just doesn’t work and doesn’t prevent harm to patients.

  • Lolly

    Thank you David for attending and asking the hard questions. I am sorry that researchers are not able to say, I am repeating what the other guy said and have not looked at the basis of the claim. I feel the same way when we as patients paint with broard brushes repeating what we read on FB pages with out understanding where the underlying data is coming from. You are so good at shinning the light on areas that need more conversation. I appreciate your diligence. Sent you a tweet from E. Shorter (following out of morbid curiosity) yesterday re: history of patient consent.

  • Steve Hawkins

    A compelling and charming, broken record. (click)
    A compelling and charming, broken record. (click)
    A…

  • OL85

    It does not seem to me that NICE are using the terms post exertional malaise and fatigue interchangeably, if they were, why would they use the term “and/or” instead of just “or”? Also although the NICE guidelines include post exertional malaise and/or fatigue as an essential characteristic of CFS fatigue, they also include symptoms being made worse as a result of physical or mental exertion as an optional symptom, so they are not consistent either way about PEM ( although it is clear PEM is necessary for eligibility for the Fitnet NHS trial). As regards the PACE trial I have seen the authors respond satisfactorily to criticisms numerous times , likewise Professor Crawley, and I think it is definitely unhelpful to M.E. sufferers to continue focusing on criticisms of their research, rather than on getting proper care for people with M.E. and more research in other areas that might be helpful.

  • freecell0sd

    “As regards the PACE trial I have seen the authors respond satisfactorily to criticisms numerous times”

    I have seen some people who are unable to follow the details of this dispute believe that they have seen this, but then be unable to explain exactly what these satisfactory responses are. Perhaps the simplest example for people to follow is the PACE trial’s use of the SF36-PF in their recovery criteria. The PACE trial’s protocol ‘recovery’ criteria required an SF-36 Physical Functioning (SF36-PF) questionnaire score of at least 85 out of 100, while the trial’s entry criteria required a score of 65 or under, which was taken to indicate that patients’ fatigue was severe and disabling. Their post-hoc criteria for recovery allowed patients with an SF36-PF score of 60 to be classed as recovered. This change was justified by the claim that a threshold of 85 would mean “approximately half the general working age population would fall outside the normal range.” The data they cited actually showed that the median score for the working age population was 100, less than 18% of the general working age population had a score under 85, and 15% had declared a long-term health problem.

    An SF36-PF score of 60 was claimed in the Lancet PACE paper to be the mean -1sd of the working age population, and thus a suitable threshold for ‘normal’ disability. They had in fact used data which included all those aged over 65, reducing the mean physical function score and increasing the SD. For the working age population the mean -1sd was over 70, requiring patients to score at least 75 to fall within this ‘normal range’. Also, the trial’s protocol makes it clear that the thresholds for recovery (including ≥85 for SF-36 PF) were intended to be more demanding than those for the mean -1sd, reporting that: “A score of 70 is about one standard deviation below the mean… for the UK adult population”.

    Even using the loose post-hoc criteria for recovery, only 22% of patients were classed as recovered following treatment with specialist medical care and additional CBT or GET. Regardless, the BMJ had reported that PACE showed CBT and GET “cured” 30% and 28% of patients respectively, a Lancet commentary claimed that about 30% recovered using a “strict criterion” for recovery (even though the criteria they were using was so loose that patients could report declines from baseline on every outcome, yet still be classed as recovered), and a paper from Esther Crawley aimed at NHS commissioners stated PACE indicated a recovery rate of 30-40% for CBT and GET[.

    It is wrong for these sorts of misstatements of fact to be allowed to go on affecting how doctors treat their patients, how funding decisions are made, and the information that patients are provided with before deciding whether to consent to particular interventions. If you have seen satisfactory responses from the PACE researchers to just this one issue, I do hope that you will share it with us. I have seen nothing but evasion and waffle from them.

    The Wilshire paper only addresses the PACE recovery criteria used to claim a 22% recovery rate, but covers all aspects of this criteria, and in more detail than I have. It is open access here: http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20 The partial response from White and colleagues fails to address the central issues, or the points of concern I raised above.

  • davetuller

    The NICE guidance are somewhat ambiguous–you are right. However, since Professor Crawley was on the 2007 committee, she needs to take responsibility for that. You are certainly free to believe she and the PACE authors have responded “satisfactorily” to criticisms. Many others, including me and many distinguished scientists disagree. It is only “clear” that PEM is necessary for FITNET since she revised her proposal AFTER I CRITICIZED IT in my libelous blog. Apparently she agreed she hadn’t appropriately cited NICE. Beyond that, the study is bogus because it is an unblinded study that relies on subjective outcomes–just how people say they feel after getting a therapy they are told will make them better. That’s called bias–creating your own positive results. It’s not acceptable in a clinical trial.

  • Ian McIlroy

    Reposting as Disqus had removed my message as spam!

    https://uploads.disquscdn.com/images/49f538f1416bc0794ddb2a8c777eaff1e0e45717861ee7516b5f5778a95075f9.jpg

    ___________________________________

    David you have hit the nail squarely on the head, Esther Crawley cannot
    answer her critics and that is why she has to resort to the tactic of bullying
    anyone who might actually question her research.

    Esther Crawley’s repeatedly employs the “tactic” of portraying researchers
    in the field (i.e.e those pushing the biopsychosocial model of the illness and
    it’s CBT/GE treatments) as being the victims and suffering harassment and then
    to portray herself as one of these victims, so that anyone who questions her
    work is then automatically prelabelled as being a harasser, being unreasonable
    and aggressive towards her. In this way she bullies her critics and seeks to
    marginalise and silence them.

    One only has to see the amount of time in her presentations that she
    repeatedly devotes to the claims of harassment to realise how important it is to
    her that she gets this narrative out and it really should beg the question from
    her audiences of why this is. After all is this normal behaviour for researchers
    giving presentations about their research? Is it normal for a presenter in the
    presentation to label anyone who questions their work later as being involved in
    harassment and in so doing disuade the audience from asking critical questions?

    The fact is though that when her work is examined and subjected to calm,
    reasoned scrutiny the massive and gaping holes in it soon become obvious to an
    objective observer and no amount of smoke, mirrors, or deflection can conceal
    them. Is it any wonder then that Esther Crawley will employ any and every
    tactic, such as accusing the patient community of harassment and journalists
    like yourself who call her out of making libellous comments about her work and
    in so doing seeking to silence and marginalize her critics and to deflect
    attention away from proper scrutiny of her work. Such claims of harassment were,
    as you have pointed out, dismissed by the First-Tier Tribunal last year, who
    found that those making the claims that patients had engaged in a campaign of
    threats against the PACE investigators were in fact unable to be support their
    claims when pressed to do so.

    Should Professor Crawley’s work actually be properly and critically
    examined, then bigger questions would have to be answered, namely how such poor
    research has got through the peer review process and was actually published in
    the first place.

    How is it that Professor Crawley seems to think that she is above having to
    answer questions about her research, it’s methodology and conclusions, like
    every other scientist? All her efforts to snuff out any debate about her work
    leads me to only one conclusion, namely that she must actually know just how
    weak her research actually is. If she is not prepared to engage with her critics
    in reasoned debate and employs such methods to try to neutralise them in the
    eyes of the wider audience and stiffle any debate about her methods and
    conclusions then this is not someone who is deluded, but someone who very much
    knows what they are doing and who is employing a deliberate and thought out
    strategy to further their aims and objectives.

    Unfortunately when Professor Crawley gives these talks her audiences are
    usually not well enough informed about ME/CFS, or they are sympathetic to the
    biopsychosocial model, so she isn’t properly challenged by them. I am glad on
    this occasion she was challenged and thank you for going along and doing it
    David, as a journalist and non-patient. But as you saw it is very difficult to
    do so at such events as anyone doing so is quickly shut down and not allowed to
    continue to ask pertinent questions, or point out the deficiencies.

    It is also so telling that Esther Crawley never mentions any of the the
    biomedical research into ME/CFS, in fact she would have her audience believe
    that there is very little known about the biology of the illness, she repeatedly
    says “we know very little about it”. Starting of in this way Esther can
    then go on to “educate” her audience with her “facts” from her research to
    reach her conclusions, unencumbered by any inconvienent biomedical research into
    the illness.

    Personally I have never understood why people who hear her Professor
    Crawley think she is charming, she has always come across to me as smarmy,
    condescending and patronizing and her research as being so lightweight and
    lacking in any real substance that it cannot support it’s own conclusions.

  • Robin Brown

    Thank you David!!! Please keep it up. It is in huge part because of you that things are changing! I am forever grateful.

  • Robin Brown

    I don’t understand how and why she is allowed to continue abusing children. Doesn’t the country have any academic or scientific standard, let alone moral???

  • Fiona

    David, I’m glad that you took the time to attend Prof Crawley’s presentation and note its many flaws. Also glad you quizzed her on the false 22 per cent recovery figure.

    I’m not so impressed at your changing tack and pursuing the libel accusation. As a patient, I’m far more interested in you going after lousy science and false claims based on lousy science, than I am about one person making an unsubstantiated allegation against you. I would like you to report on/expose information that focuses on patients, not yourself – particularly if crowd-funding paid for your UK trip.

  • Simone

    I agree, Fiona. I’d have much preferred if David had stayed focussed on the myriad flaws in her (and her colleagues’) research. Clearly, it isn’t okay that she included David’s work as one of the “libellous blogs”, but shifting the focus to that reduces this to a personal spat between Esther and David, when we need to keep the focus, and pressure, on the bigger picture.

    Esther Crawley and her ilk need to be held accountable both for their flawed research, and for the resultant harm which patients are continuing to experience as a result of their research. Generally, David does a wonderful job of this. It was a shame that this time the discussion moved away from the research.

  • Claudia Heath

    I agree. I think the focus should have been squarely on addressing Crawley’s appalling research. I understand why David would want to find a way to prise a reply to her accusations of libel out of her but not in this context. Not helpful.

  • davetuller

    Hi Fiona–I appreciate your perspective. It’s possible it would have been better to stick with that 22 percent question. But she interrupted me immediately as soon as I started, and obviously was not going to answer anything I asked. I would have been tossed out whatever I asked. I have repeatedly discussed the shortcomings of her work elsewhere. So I felt that as long as I wasn’t going to get anything answered, I should pose the libel question while I could. Was that the best choice? Who knows? However, I also think it is critical to challenge researchers who not only issue misleading statements but who actively and aggressively use tactics like yelling “libel,” “defamation,” and “harassment” as an excuse to shut down debate and not answer questions.

  • Peter Trewhitt

    To be fair Esther Crawley does not promote the ‘false illness belief’ model, though she advocates the forms of CBT and GET that were developed on the back of this untested theory.

    Prof Crawley rather holds the equally untested but more bizarre theory that ME/CFS, which she also conflates with the symptom of chronic fatigue, has an underling medico-physiological basis but that it can be cured by psychological and behavioural intervention. Presumably this explains her interest in NLP as exemplified by the Lightening Process that also believes psychological intervention changes brain function.

  • Jan Wade

    No, she no longer deserves the honor of rigorous scientific debate. 11,000 studies/articles documenting organic dysfunction in ME sufferers is evidence enough that Esther Crawley deserves no less than multiple civil and criminal lawsuits.

  • Jan Wade

    Don’t worry, Wessely, Crawley, Chalder, et. al, will indeed get theirs, for God is the ultimate Judge, and will judge them accordingly.

  • Jan Wade

    Thanks for that, Jimells – the university’s position is telling

  • deboruth

    The BSPs have SMC as a highly efficient and pro-active public relations machine. Hence the loving touch from the Beeb. The British charities have not wanted to make this sort of campaign. I understand that “making a scene” is antithetical to UK mores, but the BSP set suffer from no such reservations.

  • deboruth

    Possibly originating with the moderator who cut off Dr. Tuller and sent him away — which was very much a wrong thing to do. Anyone know who that moderator was?

  • Joh

    Thank you so much, David! I’m in bed 22-23 hours a day and your work means so much to me. It gives me hope that I might actually have a life again. Esther Crawley has to stop standing in the way of science for the sake of millions of people – including children – worldwide. This is not a game, it’s our life. It’s so distasteful that she presents herself as a victim. I can only dream of having children and getting my phd or showering and leaving the house. It wasn’t only the disease that took these things from me and stole my 20ies and 30ies – it was the wrong treatment, Crawley-style.

  • pinklil

    I think, if I were David, I’d be inclined to mail Bristol University and ask be told the content of the ‘cease and desist letter ‘and the date on which it was sent. On the basis EC has repeated this line more than once I think we have to assume she isn’t lying about the existence of this letter… unless of course David is able to discover that indeed she is. 😉

  • Olivia Beatty

    I think it was Tymes trust that used a ” vexatious FOI ” to uncover email exchanges between Crawley and Wessley that show it is a deliberate decision to highlight ” harassment” at every media event.

  • Olivia Rowe

    Very good suggestion Pinklil, Crawley’s lies need to be exposed. She needs to be hoist with her own petard.

  • pinklil

    If indeed it *is* a lie. It should be pretty straightforward to find out. The devil is usually in the detail isn’t it?

  • Marco Groen

    The Oxford criteria does not reguire PEM only fatigue as a main symptom longer then 6 months. Mark, you make a fool of yourself by falsely accusing David. There are now 2 persons who need to make an apology, you and Crawley. P.S. real scientists look at the flaws in the Pace trial and the work of Crawley. I understand you and Crawley like to avoid that and like to spin.

  • Mike Gambit

    I’ve met David Tuller on four occasions – three of those occasions being the three days of the QMUL/ICO FoI tribunal. I found him inquisitive, tenacious, knowledgeable, smart. I also found him respectful of his company; he packed away his MacBook Air when we were told by the judge about reporting restrictions. There were no surreptitious attempts by him to subvert that.

    I find your post ill-informed, irrational and an attempt to damage his character.

  • Adam Lowe

    Also, journalists can report on court cases without prejudice–meaning more papers could pick up the claims against her without her being able to sue them.

  • Adam Lowe

    This was written in response to my article highlighting the inconsistencies in her claims. The university says it has no official way to record harassment, and its harassment policy has disappeared from the web, which seems very suspicious. If a crime happened at work, or an incident that puts staff at risk, it would be logged as a health and safety concern. But they have no such records…

  • Valentijn

    Crawley has been invited to debate her theories and research for years. Her response is to attack patients and accuse journalists of libel. She is the one badgering ME patients, researchers, and advocates. If anyone is doing any harassing, it’s Crawley.

  • jimells

    Mark Paine, your comment is an example of exactly why patients need to continue to fund Dr Tuller.

  • Barry

    I agree you did the right thing in the cirmcumstances David. Part of EC’s bad science model is the way she suppresses, and effectively censors, good-science criticisms of her work. The libel tactic is just one attempted suppression method, and so you challenging that is very important. Not a selfish act on your behalf at all; very salient and unselfish.

  • Margaret Laverick

    Why would any university give EC a platform without looking at the latest scientific information? Thank you David for not allowing this to go unchallenged.

  • Ann West

    She is the main NHS paediatric specialist here, since Dr Nigel Speight was sidelined, (and one of the few prepared to travel outwith area). If you didn’t know much about the subject she would be the consultant deferred to should you have a child who was not improving with standard measures (sleep hygiene/ activity management). Let’s face it GPs and paediatricians have had very little training/ info in ME
    As ME services are patchy ( and non existent in areas) the travel factor makes a consultation more attractive for paediatricians who don’t know what else to do.
    I cannot understand why it has not been picked up that she dosn’t have a lot of experience with ME; from the papers I’ve looked at, the children present with chronic fatigue- if this is at all in doubt , she simply invents a new category. (chronic disabling fatigue being a recent one)
    Extrapolation of treatment cannot be done for different illness populations, particularly where there are no objective result parameters- this is positively dangerous.

  • James David Chapman

    Dr Tuller,

    I witnessed and experienced repeated personal attacks from M.E advocates. I ended 10yrs of work for pwme when well-known figures within the M.E community would not reject this behaviour. I felt some advocates’ actions were damaging rather than rude, bullying rather than impolite.

    James/.
    @batteredoldbook