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.

  • Anne 20 November 2017, 7:05 am

    Thanks you so much David!
    Esther Crawley has gone so far in refusing to engage in discussion and answer questions, that her position is becoming more and more untenable.

  • Sean 20 November 2017, 7:08 am

    Esther Crawley has a terrific sense of entitlement

    *To withhold data funded by public bodies
    *To avoid any criticism of her work
    *To deny the biomedical research conducted by Prof Julia Newton & others which refute her psychosocial theories on ME/CFS.
    *To make accusations of harassment & libel with an absence of proof.

    Thank you David for challenging this.

  • pinklil 20 November 2017, 7:10 am

    Thank you David for taking one for the team. I agree… I’m sure the Crawley Camp will have been scurrying around behind the scenes all weekend to make the most of this… and to do so in their / her favour. In the long run she won’t win. She can’t win. Truth always wins in the end and she doesn’t have truth on her side. I’m going to sit back and wait for the ‘reaction’. As the crow flies I’m not that far from her stomping grounds… it’s possible I might see the mushroom cloud if she decides to ‘go nuclear’ 😉
    If nothing else you’ve brightened the start of another grueling week of this endless disease.

  • Sally Burch 20 November 2017, 7:11 am

    Thank you for attending this lecture David, and for asking pertinent questions. Hopefully, an increasing number of people will look more closely at the claims Esther Crawley makes.

  • Brenda Vreeswijk 20 November 2017, 7:31 am

    I almost fell of the tip of my couch …got so excited reading you 2 finally met in person… hoping sparks would fly…but no….exactly what we should expect from her.
    When your not pro-Crawley…she will not answer your questions. No negative comment (even if it’s a right one) will be accepted. Everybody who disagrees with her, is basically the enemy.
    Thank you for your effort anyway…until the next episode….

  • Anil van der Zee 20 November 2017, 7:35 am

    Oh man, it’s a pity she doesn’t want to engage in any discussions. Isn’t that the beauty of science. An exchange of opinions searching better answers. As you’ve mentioned she seems to be the only one being allowed to say whatever she wants to say about her critics. Including smearing very ill patients.

    This was blog was so good. Thank you David.

  • Scott Simpson 20 November 2017, 7:36 am

    Awesome David! No doubt Crawley was shaken by your presence. I take glee in her fall from grace and will do a little happy dance (ok, ok, truth be told, I’m too sick to for even a little dance, but you get the picture) when her reputation and so-called research have been stopped from inflicting further harm on ME patients.

  • Guest 20 November 2017, 7:47 am

    I expect that as her talk was on what’s new in pediatric ME/CFS, she mentioned the recent pediatric primer?

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
    Peter C. Rowe1, Rosemary A. Underhill2*, Kenneth J. Friedman3, Alan Gurwitt4, Marvin S. Medow5, Malcolm S. Schwartz6, Nigel Speight7, Julian M. Stewart8, Rosamund Vallings9 and Katherine S. Rowe

    Also, I note that the Chronic Fatigue Syndrome wikipedia talk page had some stimulating discussion over the past few days, initiated from an IP address in Exeter!

  • Peter Trewhitt 20 November 2017, 7:48 am

    Thank you David for attempting to engage Prof Crawley on some at least of the things she continues to misrepresent.

    Presumably a factor in her dropping her libel accusations against yourself is that, though she probably believes what she says, she still will not want more people to read what you say. Also it seems she is learning to be more nonspecific in her narrative of victimhood to prevent challenges of her veracity spoiling a good story.

  • acacia1 20 November 2017, 7:50 am

    Thanks for having a go, David. Crawley is very precious. She dishes it out but then runs and seeks refuge in offence and seems incapable of a reasoned argument. Her protectors are jus as bad.

  • Alison Orr 20 November 2017, 7:58 am

    It strikes me that she feels the need to impress her audience. To claim you’ve been sent a cease and desist notice would have gained traction with the audience, but they only need to look beyond that lecture hall to find out the truth. She’s in her own wee bubble. Thank you for confronting her. I’m sure she’ll just add it to her “vexatious” arsenal.

  • Matthew G Webb 20 November 2017, 7:59 am

    Well done david and thanks. I guess the trouble with a public confrontation in her arena is that she can end the discussion and ghen say see what i mean by harrassment . But u are a good example of what needs to be done because u are not an me sufferer so she cant use that label to support her accusations of vexatious patients, u r a journalist and your criticisms are based on intellectual arguments. Im sure we can find a way to force this into a public debate but how ? It needs the right person in the uk est to have a relative or themselves get severe ME and exerience the helplesness in the face of these disgusting people who constantly undermine our daily battles . To b honest i wouldnt wish it on anyone except maybe wessley et al.

  • Diane Kirk 20 November 2017, 7:59 am

    Well done, firstly for questioning her and secondly for managing to sit through 45 minutes of her performing.

  • mesupport 20 November 2017, 8:07 am

    No Sunday Times artwork alleging threats so this time a “cease and desist” letter that also has fiction as it’s basis.
    Any wonder her research is a stranger to the truth of lived experience documented by the patient community.

  • Charlotte Green 20 November 2017, 8:11 am

    Thank you for at least trying to engage with EC. It is high time someone took her to account for the lies she is spreading, seemingly in an effort to save her career. The amount of harm she has done to ME sufferers with her nonsensical research and false claims of harassment does not even bear thinking about. She does not speak for me, or anyone else I have encountered with ME. The patient community are increasingly fed up of her attempts to smear those who are doing proper work towards finding a proper cure or treatment for ME. Her employers need to take her to task as she should not be allowed to carry on promoting her self-serving narrative and Action for ME need to cut any ties they have left to this vile charlatan. She needs to learn that taking issue with bad science is not harassment – it is valid criticism from people who are severely affected by this illness. The longer she is allowed to peddle her lies, the more damage she inflicts on a group of extremely ill people who, due to the nature of this illnesses, cannot always fight back.

  • Tina Rodwell 20 November 2017, 8:12 am

    I have 101 things to say but mostly thank you David, thank you so much.

    Each day I hear how mothers struggle with the bullying that keeps us in line. We are gagged and bound by those that should be supporting and protecting our children. When we read your posts it gives us all a little hope, and that soon our children will be treated as humans and not just cannon fodder for her research

  • Valentijn 20 November 2017, 8:19 am

    I suppose now she’ll take the Chalder approach and only speak if no one’s allowed to ask questions. It’s not like a conference needs involve any conferring, right?

  • Paul Fox 20 November 2017, 8:20 am

    Thank you again, David, for your commitment to this cause. It is remarkable, after all that has gone on, that this woman and others are able not only to continue their campaign of disinformation but also to abuse vulnerable children in the process. This all goes to highlight once more the state of affairs in this country’s academic, healthcare and child-protection systems, all of which are ostensibly intended to be beneficial to people.

  • Luther Blissett 20 November 2017, 8:27 am

    I’m afraid I’ve beaten David to the scoop on why his 22% recovery question was received in such a way.

    My coming article in the Weekly World News will also explain who the cease and desist letter was sent to, and why.

    I cannot reveal much before publication, but I can reveal the full headline as a teaser,

    “Bat Boy Ate My Research Sobs Crawley!”



  • Olivia Rowe 20 November 2017, 8:39 am

    Once again Crawley attacks from the position of victim and tells bare faced lies; textbook abuser DARVO tactics. All the while she protects herself from uncomfortable truths by refusing to engage with any person or evidence that runs contrary to her chosen view.
    Her position is untenable. Her lies are increasingly incredible. The 2% paediatric ME figure is so obviously untrue that any GP will know from his own practice that she is conflating ME and fatigue.
    There must be some seriously complicated mental gymnastics she’s engaging in order to cling on to her blinkered beliefs as the BPS theory of ME house of cards falls around her. I’d pity her if she wasn’t causing so much harm.

    Thank you for going to this talk and asking questions David. Thank you for all your amazing work in the ME field – you are making a difference.

  • anniekim 20 November 2017, 8:39 am

    Thank you David for attending this lecture and asking questions. So grateful for all you are doing.

  • Trish Davis 20 November 2017, 8:41 am

    Thank you David for trying to stand up for the truth. Sadly, I gather the audience saw your intervention as an example of the harassment she claims to be suffering, and expressed support for her. We have a long way to go. I don’t know what else you can do. I feel a mix of gratitude to you for trying, and helplessness in the face of someone who is still getting away with promoting outright lies about the patient community, and about what ME is and what treatment is appropriate.
    I wonder whether anyone has any ideas of how Bristol University and the bodies who fund her research can be made to see what it really going on.

  • @Tweetyaccount 20 November 2017, 8:50 am

    Thoroughly enjoyable read, thank you.

  • Art Vandelay 20 November 2017, 9:00 am

    Well done, David. This episode demonstrates yet again that the PACE authors and the rest of the BPS cabal have no intention or desire to engage in rational and reasonable scientific debate. They would rather suppress dissenting voices because they know that their own arguments simply don’t stack up.

  • Lisa Petrison 20 November 2017, 9:27 am

    That is really extraordinarily and not in keeping with a scholarly debate at all. I am finding Prof. Crawley’s behavior to be fairly shocking.

    Lisa Petrison, Ph.D.
    Executive Director
    Paradigm Change

  • jimells 20 November 2017, 9:38 am

    Well this is fun for homebound patients. However I keep thinking that while the Crawley Circus is entertaining, the NIH and CDC are getting a free ride. Yes it looks like things are changing in the US, but looks are deceiving and easily manipulated by sophisticated public relations campaigns.

    Patients are still unable to find knowledgeable physicians, CDC is doing nothing to change physician attitudes, and NIH still refuses to spend more than a pittance on real research. As far as I know, insurers are *still* denying benefits based on the fraud that “CFS is a mental illness”.

    It took NIH 15 years to re-establish the cooperative research centers that they suddenly and quietly killed back in 2003. The amount of money allocated to the new centers is barely enough to keep the lights on. These new grants can not be used for clinical treatment trials, and NIH has publicly discussed that they do not intend to fund clinical treatment trials for years. Stopping Crawley’s bogus research is important, but increasing the funding to real researchers is even more important.

    Attacking the work of Crawley and the rest of the Wesseley School is a good strategy because they are weak links. That approach needs to highlight how they enjoy the protection of a powerful establishment that includes insurers and state agencies on both sides of the Atlantic. Only by exposing the puppet masters will we see a real change in the thirty year Policy of No Research.

  • Trish Davis 20 November 2017, 9:42 am

    Replying to myself, a further thought on this, David. Perhaps it is time for one of your well reasoned letters signed by multiple doctors and scientist from around the world, this time addressed to the Vice Chancellor and President of Bristol University.

    The letter would have to stick to the facts about the problems with EC’s research methodology, including that demonstrated in her published epidemiological and clinical trial research and errors of fact in her public statements. It could also highlight the fact that her publicity campaign about FITNET before it even started, by declaring which arm of an unblinded trial with subjective outcome measures is expected to be the more effective, scuppered any pretence of objectivity.

    The Vice Chancellor and President of Bristol University is Professor Hugh Brady who is himself a physician who has worked, among other places at Harvard University as an associate Professor of Medicine, has directed a biomedical research institute and held various professorships of Medicine. Details below.

  • Trish Davis 20 November 2017, 9:45 am

    Can you clarify whether you mean Esther Crawley or David Tuller is not acting ‘in keeping with scholarly debate’. Your comment can be taken both ways.

  • Olivia Beatty 20 November 2017, 9:47 am

    The BBC also appear to protect her. 2 prime time interviews in less than a year on the Today program. In a reply to my complaint, they promised broader coverage . So far they have missed the US funding of the bio bank and the recent bioenergy paper from Newcastle.! Poor quality from the science editor.

  • Samuel Eglington 20 November 2017, 10:03 am

    I would have thought “I am finding Prof. Crawley’s behavior to be fairly shocking” ought to clarify who Lisa is referring to.

  • Henry Anderson 20 November 2017, 10:07 am

    Thank you for your continuing commitment to patients and good science David! Esther Crawley regularly gives lectures vilifying and demonizing any of the (very ill) patients who dare criticize her. You do the opposite – giving a voice to patients, supporting evidence-based science, good medicine and good practice.

  • jimells 20 November 2017, 10:08 am

    As if to underscore my comment on puppet-masters, the University of Bristol has released a new statement of support for Crawley:

    “The University has long been aware that Professor Crawley has experienced significant harassment and personal abuse over several years. This has included but is not limited to: vexatious FOIs; cyber stalking; malicious emails; blogs/tweets and other social media posts that could be regarded as defamatory; unsubstantiated complaints to multiple institutions including Ethics Committees, The University of Bristol, The Advertising Standard Authority, the GMC and funders. The University considers this behaviour to be unacceptable.

    The University has previously reviewed Professor Crawley’s research projects and found they are being conducted in line with applicable research ethics and governance requirements. The University has supported Professor Crawley in dealing with the harassment and provided legal, governance and research advice and support when required.”

  • Ian McIlroy 20 November 2017, 10:55 am

    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. 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.

  • PeeWee 20 November 2017, 11:35 am

    An academic spoke in an open meeting. An attendee who had listened quietly throughout the presentation used the Q&A to ask a question about a claim she had made in it, and another which gave her the opportunity, in a very supportive environment, to explain why she has previously claimed something which doesn’t appear to be the case.

    She’s clearly returned to Bristol Uni and told them she’d been harassed / personally abused. It’s a good thing there’s a video of this terrible experience as I guess it will help Bristol to understand just what she’s asking them to publicly denounce as unacceptable behaviour.

  • John Robinason 20 November 2017, 11:42 am

    Sounds like most Researchers who do Research for a good living and prove it by never finding any real results

  • Helle Rasmussen 20 November 2017, 12:03 pm

    You brave man, David! We salute you.

  • Bill Clayton 20 November 2017, 12:04 pm

    I know I’m living in dreamland here, but wouldn’t it be wonderful if she would accept an invitation to a proper scientific debate on the subject ? As I say, dreamland……….

  • Helle Rasmussen 20 November 2017, 12:12 pm

    You brave man, David. We salute you!

  • Wendy Boutilier 20 November 2017, 12:56 pm

    David Tuller “take me to your leader.”
    You didn’t point and called her “fake news.” If she can’t answer a serious question asked for a serious reason then she definitely needs a dose of her own “deconditioning.” Leaving politely when requested says nothing for her and everything for us. Thank you, thank you, thank you.

  • Debbie Smith 20 November 2017, 1:12 pm

    So, who would like to do a TEDX talk on “The Best form of Defence is Attack”.:
    A history of how psychiatrists and others have used the HMV (Harassment, Militant and Vexatious) Model to further their careers and income streams.
    This model is used to discredit anyone involved in the critical examination of “research” based on the idea that ME has a psychogenic cause.
    This model rejects calm, reasoned scrutiny and academic discussion of theories, results and conclusions.
    Instead it seeks to trivialise and ignore anyone daring to question their view, whether this be from informed patients, carers and friends or from those whose extensive biomedical research and clinical experience has contradicted the BPS model. (US IOM Report 2015)

  • Mark Paine 20 November 2017, 2:24 pm

    I find David Tuller’s behaviour more shocking. He seems to think it’s fine to make lots of false accusations against people like Crawley, and then harrass them about it. A good example is his blog post on the FITNET trial where he says ” In the NICE guidelines, post-exertional malaise is not an optional symptom”. However if you look at the actual NICE guidelines (helpfully linked by Tuller) you’ll see that it IS in fact optional. I’m not sure if this is stupidity or an oversight, but either way it doesn’t excuse his harassment of Crawley.

    More sad is that so many patients have actually paid Tuller to continue this nastiness and harassment.

  • Olivia Rowe 20 November 2017, 2:31 pm

    Why do you think asking a researcher to debate their theories is harassment? Surely science progresses by asking questions and testing theories to see if they hold water?

  • Primrose 20 November 2017, 2:36 pm

    “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.”

    Love that little sentence there David it really made me smile 🙂

    God bless you for all you do. LOL i bet seeing you there put the wind up her haha, no doubt she’ll twist it for her own ends but as you say ‘the trajectory is obvious’

  • Lou Corsius 20 November 2017, 2:51 pm

    Thank you for your lively description. I find it hard to imagine that a professor avoids a discussion. Assuming that she would be right, she should have lots of scientific arguments to win the argumentation. Sadly she didn’t. This was her ultimate chance to prove you are wrong about the subjects you mentioned.

  • Wendy Boutilier 20 November 2017, 2:59 pm

    I thought I already posted this but sometimes comments disappear.

    David Tuller “take me to your leader.”
    “You didn’t point and call her “fake news.” If she can’t answer a serious question asked for a serious reason then she definitely needs a dose of her own “deconditioning.” Leaving politely when requested says nothing for her and everything for us. Thank you, thank you, thank you.”

  • uab9876 20 November 2017, 3:07 pm

    Looks like is part of the diagnosis to me. From Healthcare professionals should consider the possibility of CFS/ME if a person has:

    fatigue with all of the following features:

    new or had a specific onset (that is, it is not lifelong)

    persistent and/or recurrent

    unexplained by other conditions

    has resulted in a substantial reduction in activity level

    characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

  • Mark Paine 20 November 2017, 3:08 pm

    Asking a scientist to debate their theories is of course not harassment. Read my comment again. In this case Tuller is demonstrably wrong, and yet he continually badgers Crawley on twitter, by email (to her colleagues as well), and in person. That’s not how science works, and it’s not the actions of a reasonable person, never mind a scientist. But I see he is a journalist rather than a scientist, and he was fired? from his position recently at his university.

  • uab9876 20 November 2017, 3:09 pm

    I think you are wrong about the criteria but it even if you were right to write a blog questioning and raising issues and offer the right of reply is not harassment. Crawley is a senior academic who should be capable of defending her ideas and work against rigorous debate. Unfortunately she chooses not to but instead to smear patients.

  • Olivia Rowe 20 November 2017, 3:30 pm

    And on countless points Crawley is demonstrably wrong. The difference is when mistakes are pointed out to Tuller he corrects them, the same cannot be said for Crawley.
    Crawley IS doing great harm to the children with ME in her care when she conflates chronic fatigue with ME and prescribes the same treatment. She IS doing great harm by ignoring biomedical research into ME. She IS doing great harm when she smears the patients and families of patients with her lies. She should be called to account, she should answer her critics, she shouldn’t get away with making up facts the way she does.
    Other ME researchers don’t get the criticism she does – they get praise, thanks and crowd funding – Crawley needs to look in the mirror and ask herself why.

  • uab9876 20 November 2017, 3:39 pm

    So Crawley has gone on national radio pushing a particular message that stigmatizes patients. She has promoted research where there is serious methodological concerns and used such platforms to wrongly claim that patients ‘tweaked’ a reanalysis of the pace results when they used the definition from the PACE protocol. She does this from a position of power and with access to the voice of the media.

    I don’t understand how a journalist questioning here about claims is harassment but her behavior is not. Patients feel stigmatized by her behavior. They have to deal with the issues after radio broadcasts saying they will recover with a little exercise. When family, friends and doctors then dismiss them. Yet someone who challenges that behavior is the harasser?

    I see it as a public duty to point of the serious flaws in Crawely and others work as well as the ethical issues. Is it badgering and harassment to ask someone for a response prior to publishing an article, to offer a right of reply or to ask what they object to when they claim libel.

    We shouldn’t forget that Crawley’s colleagues (including other professors) have also been involved in her research without ethical approval or where the methodology of open label studies and subjective outcomes are too poor to give meaningful results. They may not be spinning results in the press but they are involved.