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
36 responses to “My Brief Encounter with Professor Crawley”
Frighteningly she has her sights set on enlarging her net to include adults, as well.
As chair of the CMRC (CFS/ME Research Collaborative) she plans to divert any mainstream UK funding into BPS research.
Her aim is to set up a UK Biobank with blood samples from 10,000 adults and 2,000 children. No idea which criteria she would use for diagnosis. There would also no doubt be a large range of dubious questionnaires completed as well (MEGA) This would then tie up any possible research funding to do any scientific evaluation or further biomedical research for years. See OMEGA for more information.
There is already a UK Biobank set up in conjunction with several ME charities and biomedical researchers. This recently received a large grant from the US NIH (National Institute of Health).
So far MEGA, has been rejected, but she will keep on trying.
Because the current medical narrative on ME in the UK is that ME is psychogenic in origin.
They have been ignoring biomedical research and obvious physiological impairments in Poeple with ME for decades.
Also it seems that at this venue Esther was expecting a bunch of “nice” psychologists, not any informed academics, patients or their advocates to ask pertinent questions.
Anyone know what the collective term for psychologists is?
It’s too much to expect all 250,000 pwME to remain composed and measured. Are all people with cancer saints? Or MS? Or any disease?
Do children deserve pitiful damaging treatment and no one to advocate for them because some people with ME can get angry?
Do we make treatment judgements for any other chronic illness based on the behaviour of some of the sufferers? I know a man with prostate cancer who beats his wife therefore nobody with prostate cancer should get chemo, there should be no investment in prostate cancer research and the sufferers should be instructed to take brisk walks daily and given CBT to overcome their faulty cancer beliefs?
ME, like cancer, doesn’t discriminate. Nasty people get it too.
Hello there Olivia. Tbc I left when I found mainstream m.e advocacy unwilling to moderate behaviour it had been told was damaging to others. Best wishes.
I don’t agree, Fiona. The charge of “libel” leads directly to the scientific issues while simultaneously revealing the campaign of suppression.
Hi James,
The vexatious patient narrative has been deliberately employed to undermine patients and it’s been very effective. Tone policing plays a prominent role in almost every relevant discussion in the patient support forums to the point where we are exhausting ourselves trying not to post comments that could be taken out of context and used against us.
Does this happen with any other disease?
Why are we tolerating this?
Do people on cancer forums police each other’s tones to the extent we do?
Do other diseases have ‘leading scientists’ lying about them, their advocates and their representative charities in PR campaigns behind closed doors and in the Media?
We should be angry, very angry.
In direct response to your above post; some local politics are damaging to me, that doesn’t give me the right to stop anyone spouting it.
There are advocates who, in my opinion, go too far. It doesn’t give me the right to police them or insist that others condemn them.
I’ve had a quick google and found your blog, the ugly chapter has passed and it has nothing to do with David’s advocacy now, two years later. To my mind bringing that up in this discussion is not helpful to ME advocacy – but who am I to judge?
Hello again. I too never fully believed medical reports of misbehaviour from pwme. It was with horror that I eventually concluded that mistreatment is a real problem in m.e advocacy. The evidence is out there. Best wishes.
You are wrong. I know this because you clearly work with Crawley as you joined Disqus yesterday specifically to comment on this blog. You are wrong. I will say it again. You are wrong. The only people who are wrong in this scenario are Crawley, the people who work with her, the University who is supporting her disgusting rampage hate show she is taking around the Country accusing seriously ill people of harassment that never happened (see freedom of information from Tymes Trust) If a Judge finds requests for research figures isn’t vexatious, then why is Crawley continuing to perpetuate this untruth in her hate shows? Patients and respected researchers – remember Jonathan Edwards is 100% against what Crawley is doing, so are the likes of Ron Davis and Julia Newton who is starting to disprove her research. I wouldn’t mind betting Julie Newton left the CMRC because she didn’t want be associated with Crawley. This is not harassment. Its a legitimate voice calling out someone on their bullshit, one of a few who are speaking up for patients who have not had a voice against the likes of Wessley, White and Crawley in thirty years who have wasted, yes WASTED millions and millions on research which has not brought any further understanding of the cause or treatment of M.E. Anyone who agrees with this charlatan needs their head testing and some serious therapy.
It is not possible to blind the participants in a trial of the nature of Fitnet, and there is no suitable objective measure for CFS, I think self reported fatigue and limitations are the best measure there is at present, and school attendance is included as a secondary outcome. Although there is the potential for bias because of self-reported outcomes in an unblinded trial, this does not mean the trial is “bogus” as you call it, it’s just a limitation to bear in mind when assessing the impact of the two treatments in the trial.
Unfortunately, neither Crawley nor the PACE authors acknowledge the bias issue. And there are certainly objective measures–they all failed in PACE. A very good objective measure is use of actometers–ankle monitors that tell how far someone moved in a given period. These have consistently failed in CBT/GET trials to demonstrate improvement. PACE dropped this as a measure because they said it was too difficult for patients at the en of the trial–even though they all did it at the beginning. People reported doing better in PACE, yet no one got back to work, no one got off benefits, no one was more fit, and no one could walk significantly farther. GET slightly improved on distance walked but were still more disabled than people with late-stage heart failure, with cystic fibrosis, etc. Why do you state there are no objective measures when others have used them in these trials? They just haven’t worked. And while blinding might not be possible, there are very well-known ways to try to minimize bias. These people do the opposite. They maximize bias in their studies.
Hello again James, you’re misreading me. I didn’t say that I don’t believe that some pwme and their advocates can cross a line. I said the opposite. Unpleasant people can get ME just like unpleasant people can get any other disease – it doesn’t mean research should stop.
Hi, James–I’m sorry you had that experience.–David
Both Professor Crawley in the Smile trial and the authors in the PACE trial make reference to the fact that outcomes are patient-reported as a potential source of bias, so they obviously do acknowledge this. In fact in reference to the Smile trial Professor Crawley has stated that she set up the trial in a way that would make it harder for the Lightning Process to be shown to work.e.g. in the Guardian article on LP.
I do not think there is any suitable objective measure for CFS, in my view actometers are not a good measure for an illness like cfs/m.e., as they only measure physical activity and only for the short time the person is wearing the actometer, whereas pwme have problems not only with physical activity, but also with mental activity, malaise, fatigue, cognitive impairment, etc that could not be captured by an actometer, and the other measures you mention above are also not suitable for various reasons. I think it is far more respectful and fairer to an M.E. sufferer to ask them how they feel and what they can do.
Overall I think the research of Professor Crawley and the PACE authors when properly understood is of high quality and is helpful to at least some people with CFS/M.E., and that it is time for critics of their research to acknowledge this.
Although I know you have spoken well for PwME in the past, I fear you are conflating issues in exactly the same way EC and others around her do, to the detriment of people with ME.
EC conflates genuine critical reviewers of her work, with others who may go over the top, thereby dismissing all critical reviewers as vexatious, convincing audiences that no-one seriously criticises her work. This, as I know you realise, is not the case at all.
In your comment above you speak of attacks on you in the past, appearing to support EC’s conflation of vexatious commenters versus genuine critical reviewers. Do you support the notion that genuine critical reviews of ECs work should be labelled as personal attacks?
I’m sorry, no trial in which patients are “recovered” at baseline so they are disabled and recovered simultaneously is a viable trial. It is garbage. You are of course free to have your opinions, and I’m free to have mine. They don’t acknowledge that the very structure of the therapies–in which patients are told constantly that this will make them better–is such a huge source of bias that it really invalidates their findings.
Hi Mark Paine, in all the scientific literature I have read on this subject, where the explicit purpose isn’t to define terms–such as a case definition, terms like post-exertional malaise / post-exertional fatigue /post exertional worsening / post-exertional neuroimmune exhaustion are used synonymously.
This obviously isn’t the best state of affairs but it isn’t David Tuller’s responsibility to change it (and if he *did*, this would surely be criticized by people along the same lines you used later; asserting he’s a non scientist interposing himself).
It’s unfortunate that you think elevating a quibble based on your own misunderstanding to some kind of gross crime against science and decency is necessary…
Though, regarding the implications there is a gross crime against science and decency going on I would suggest you are at least right there. That is why courageous and freethinking journalists such as Tuller are necessary…
It is not beyond mainstream m.e advocates and pwme to reject such harmful behaviour. Research efforts hampered, not helped, by mistreatment.
“Real scientists write letters to journals to critique each other’s studies”.
They have, with real understanding of ME/CFS. See the August 2017 issue of the Journal of Health Psychology.
“It is not possible to blind the participants in a trial of the nature of Fitnet, and there is no suitable objective measure for CFS, I think self reported fatigue and limitations are the best measure there is at present”.
If the best is nonetheless woefully inadequate and potentially harmful, then there is no excuse whatsoever for promoting it otherwise – that is just downright immoral.
Hello Barry. No I do not.
“Both Professor Crawley in the Smile trial and the authors in the PACE trial make reference to the fact that outcomes are patient-reported as a potential source of bias, so they obviously do acknowledge this”.
Acknowledging a source of bias, is not the same as acknowledging that the bias is significant enough to render results invalid.
I didn’t get his name. He was actually very polite and apologetic to me when he went outside with me. I don’t blame him. He was trying to figure out what to do in a difficult situation. Esther’s reaction to my question was the problem.
Pure personal abuse from m.e advocates, David. And when I reported the abuse of myself and others, I received further personal attacks for doing so.
Plese keep the fire turned up – civilly, of course. You are speaking for vulnerable patients – she is not.
22% recovery, even if it were true (instead of a much smaller number lost in statistics and bad experimental design) is STILL pitiful.
I don’t wish this disease on anyone, but it is too bad people can’t experience it for a couple of months (instead of my 28 years), and then go back to work finding the cause, and treatment or a cure.
“In fact in reference to the Smile trial Professor Crawley has stated that she set up the trial in a way that would make it harder for the Lightning Process to be shown to work.e.g. in the Guardian article on LP.”
What do you think her claiming this shows? She was promoting positive results from a poorly conducted trials which claimed to justify the use of pseudo-scientific quackery as a treatment for sick and desperate children – do you realise that she had a personal incentive to try to present herself as being a hard-nosed sceptic? If you took that time to look at the evidence you would have found that even back when she was setting up the trial Crawley told her ethics review board that: “she has worked before with the Bath [LP] practitioner who is good”. https://meagenda.wordpress.com/2011/01/06/letter-issued-by-nres-following-scrutiny-of-complaints-in-relation-to-smile-lighting-process-pilot-study/
Furthermore, SMILE had not always been intended to be a nonblinded trial relying on subjective self-report outcomes. The initial protocol stated that: “The primary outcome measure for the interventions will be school attendance/home tuition at 6 months.” http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/smprotv6final.pdf
This outcome was due to be verified by checking school records.
If Crawley was, as you seem to believe, attempting to make it harder for LP to be shown to work, why would should change to a primary outcome more easily prone to bias? The school attendance data provided in the SMILE paper shows a null result at six-months, and it is not even clear if this was based on school records rather than just self-report. By 12 months, data was missing for a third of the LP group, and it was only then that there was a significant difference between groups.
You seem to just want to trust the narratives being promoted by Crawley and the PACE authors without taking the time to check the facts.
With 120 comments in, I am going for the easiest answer EVER. “Esther” Entitled people want their credentials up front. Dr. Crawley or Professor Crawley? Having made this mistake numerous times, which is not a mistake at all, I go with my gut. Phillip Is Phillip and I don’t care if that is the the pope or the king of England. I suspect it closed some doors along the way. No kidding. So superficial. Keep ankle biting until another leg falls. THANK YOU.
When you asked your questions, Dr Tuller, was Prof. Crawley being addressed by an m.e activist who rejects personal attacks or by an m,e activist who thinks swearing at researchers, journalists or patients is warranted?
I understand that you are cross about the events that caused you to leave advocacy, but I’m at a loss to see why you’re holding David to account for the actions of someone else.
We can’t discuss the events you are referring to without naming other parties, but I agree the episode was dreadful.
This blog isn’t the appropriate platform for discussing it though.
That is SO scary!! When you say “here”, do you mean just her part of the country or all of UK?
James, I am not going to get into another extended exchange with you about this. Personal abuse is wrong no matter who commits it. I have said that repeatedly but I recognize that my sympathy toward your situation is not sufficient for you. I am focused on my work and not policing the online world. I had nothing to do with the events you’re talking about. I am responsible only for my own behavior. I have not abused anyone and I don’t accept your implications that my vigorous criticisms of Professor Crawley and the PACE team constitute harassment or abuse or personal attacks or anything comparable to what went on within the community. I am happy to discuss other topics with you but this is the end of this exchange for me.
Appealing to the self-appointed Tone Police is not an excuse for researchers to remove themselves from scrutiny of their work.
Hello. I didn’t delete 50,000 tweets because I was cross. I ended my advocacy for pwme because I saw advocates stand by and allow a pwme to be branded sick and crazy. I ended my advocacy because I experienced a tiny amount of the wearing and persistent disrespect that researchers report – and I can tell you honestly – it is just miserable to be called names over and over and over again.
Dear Dr Tuller,
In your post you suggest Prof Crawley might portray m.e advocates as belligerent. You refer to reports of researchers’ experiences of harassment as overwrought, anti-patient, tiresome memes. And you suggest that you think Prof Crawley might want to bully critics into silence.
You appear to have written all this while aware of genuine misbehaviour in m.e advocacy. I don’t think this is fair to Prof Crawley. Likewise I was not personally attacked by a meme, I was called names by a succession of m.e advocates.
I don’t see substantive discussions between us, but I am glad to now hear that you are against all personal abuse. I’d like you to understand that I don’t ask you to publicly “police” m.e advocates any more (or any less) than you attempt to “police” BPS researchers.
Having been publicly against GET for 17yrs, I can confirm that I do not equate criticism of treatment or research with personal abuse of researchers. Having spoken at some length to Prof Wessely, I can say that in my experience researchers and patients can disagree without acrimony and can move past disagreement to find common ground. I suggest this would be a profitable way forward for both medicine and m.e patients.
I would like to discuss abuse in m.e advocacy further with you. I understand however that you do not want this, and so respectfully, I pick up my bag and leave the building.
James/.
@batteredoldbook
“its harassment policy has disappeared from the web” – does anyone have a copy of what it was?
“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.” Heavens. I do applaud you for that. As someone who has been interviewed quite a few times now, with outright lies and gross misrepresentation quite common, there has been zero interest in correcting them. MIT’s legal department has failed to do anything remotely like this.
All the best to you. Quite impressive what you have been doing, and very needed.
Well done for challenging Crawley directly. These so called health professionals have been allowed to run amok in the UK making all sorts of false and misleading claims but it won’t work now.