By David Tuller, DrPH
For the last couple of weeks, I have been hammering the CFS/ME Research Collaborative to take a position on the actions of its deputy chair, Libelous Esther—better known as Dr. Esther Crawley. As I reported in several previous posts, Dr. Crawley falsely accused me of writing “libelous blogs” and Dr. Racaniello of posting them. To keep members of the CMRC board in the loop, I have sent them e-mails with links to these posts. In these e-mails, I have tried to be direct and pointed, but reasonably polite. I have mostly succeeded, although the recipients might have their own perspective.
At first, the CMRC refused to respond at all. Then the chair of the board, Stephen Holgate, sent me what could only be interpreted as a “f**k off” message. He told me that Dr. Crawley’s actions had nothing to do with the CMRC because it was just a “voluntary” group of colleagues with “no official standing.” Therefore, he wrote, I had to pursue my concerns through “other avenues.”
To me, “other avenues” meant more blogging about the false accusations of libel and the CMRC’s inadequate response, among other things. So I wrote yet another post about L’Affaire Crawley, noting the CMRC’s explanation that it could not possibly take a position because it was only a voluntary group with “no official standing.” I duly sent this post to the CMRC board.
And on Friday, I finally received from Dr. Holgate an enthusiastic endorsement of Dr. Crawley and her work. The statement made no mention of her recent multi-media spectacle, including her false libel accusation and her portrayal of legitimate requests for information as “vexatious.” In other words, the CMRC has sent me its second “f**k off” message. Happy International ME Awareness Day!
Here’s Dr. Holgate’s e-mail:
Dear David,
Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair. The CMRC exists to promote the highest quality of basic and applied evidenced-based and peer-reviewed research into CFS/ME and Prof Crawley helps us to do this. Prof Crawley’s science is tested through the demanding procedures that all scientists must face when seeking grant-funding and publication in leading journals. The high quality of her research is recognised by her peers and she is a Professor of Child Health at the University of Bristol and an NIHR Senior Research Fellow. She is the clinical lead for the specialist child CFS/ME service at the Royal United Hospital in Bath and, sadly, is one of very few scientists in the UK actively trying to find a way to help children affected by CFS/ME. Contrary to some claims this collaborative is not fixated on any one cause, therapy or branch of science – our only goals are to improve our understanding of this serious illness and help alleviate suffering. In the meantime, our work remains focused on increasing collaboration and funding for more research and we will continue to work with all key stakeholders to achieve this.
Yours,
Stephen
I wrote back to Stephen and other board members that I took his answer to be an endorsement of Dr. Crawley’s actions and her false libel accusation. I noted that PACE, like Dr. Crawley’s research, had also been “tested through the demanding procedures” required of scientists. Given that PACE was a disaster, I pointed out, I didn’t hold those “demanding procedures” in as high regard as he did. I again noted the serious flaws in Dr. Crawley’s research.
Finally, I let Stephen and the CMRC board members know that I would be discussing the PACE mess and the Crawley situation, including their own role, during my talk on June 1 at the Invest in ME conference dinner. I included a link to the dinner information, in case any of the CMRC board members wanted to attend.
*****
On a related issue, a number of people have urged me to sue Dr. Crawley. I have made it clear I’m not going to do that. Not because she doesn’t deserve it, but because I don’t deserve it. Lawsuits are hell for everyone. The opportunity costs in time, money, and energy are incalculable. Except for Donald Trump and attorneys, no one who has ever been involved in a lawsuit would ever want to be involved in another one. (Of course, not filing a lawsuit does not mean I can’t file complaints with her university and medical regulators.)
There are other excellent reasons not to pursue that route. For one, by taking legal action off the table, I occupy the moral high ground. That allows me to slam Dr. Crawley and the CMRC for their awful behavior as much as I want.
For another, and here’s the real challenge, I would have to prove that Dr. Crawley’s false accusation has actually caused me harm. Dr. Crawley has had tremendous influence over the health and lives of people with ME/CFS, especially in the U.K., but she has no power over me. I cannot honestly argue that her behavior, however distasteful, has damaged my reputation, caused me anxiety or led to economic loss. On the contrary, she’s given me great material to blog and talk about, complete with an excellent slide-show that documents her unprofessional behavior. Going forward, this stunt of Dr. Crawley’s and the resulting visuals are likely to haunt her career and inflict permanent damage on her reputation.
Now If I were to suffer a renal emergency in the UK and no nephrologists would see me because they had heard Dr. Crawley’s false accusation of libel, then I might be able to argue that I had suffered actual damage. Until then, no. (I do have a history of kidney stones and I am coming to the U.K. soon, but I don’t think she‘s gotten to the urologists yet.)
Comments
30 responses to “The CMRC Affirms Full Support for Libelous Esther”
I thank you for making me laugh out loud on such a serious matter.
I have a lot more to say on the subject if/when my brain gets in gear.
My respect for organisations diminishes when they support one of their own at all cost, especially when that one has so blatently lied about your work and shown disregard, faleshoods and disrespect to patients.
Excellent response again …you’ve even got me laughing on this one. Have asked both afme and the MEA on their Facebook site to confirm if this is their position.. as is stated by the chair. Thanks for pursuing this David and Vincent.
I find it strange that in his response Holgate doesn’t actually say he believes that Crawley’s approaches are good but rather rests on others peer reviewing them. Is he leaving himself room for deniability when it is widely accepted to be poor science to use subjective outcomes on an open label trial. Or has he simply not bothered to understand the issues.
However, it seems natural to conclude that the CMRC does not understand what high quality science is and instead substitutes in a definition of anything that can get past peer review.
This reads like a thriller novel…making jokes about it but that is all to try to get above the serious and disgusting way everybody is treated who’s con-PACE.
David, waiting patiently to the next episode…maybe in the end you can wright a book about it, although I doubt it if people believe the story is real if they were not a part of it.
Here here …
Well said. I completely agree with you
Proof that a sense of humour is the top priority when dealing with Myalgic Encephalomyelitis.
Thank you so much for making me laugh on a bedridden day!
I’m from Germany and it’s a bit of a running joke here, that whenever Angela Merkel states that someone has her “full support” that person gets fired soon after that, so there’s still hope! 🙂
Looking forward to reading about your talk at the Invest in ME conference.
What an absurd response by the CMRC. They have shown their true colours.
David, if one were to write a parody about Dr. Esther Crawley and the CMRC, one could not have done a better job than that letter from Stephen Holgate.
I swear, you couldn’t make it up!
So, a group of people who wouldn’t know what science is if it hit them in the face support their vice chair, who also wouldn’t know real science if it her in the face. This whole BPS theory and the fraudulent, cynically biased research they do to back up their theory is just a racket for a small group of influential frauds. Also, foisting a psychological treatment on children with a physical illness is not “helping them”. But in the 1984-esque world of M.E. research, it’s par for the course.
As an M.E. sufferer I think this kind of response towards those such as Professor Crawley and the CMRC who are trying to help people with M.E. is actually unhelpful. I am afraid it may deter researchers from getting involved in research on M.E. and increase the stigma M.E. sufferers face. There is obviously nothing wrong with informed and fair critiques of science, but the tone of this, and the manner in which the issues involved are portrayed is unfair to all concerned in my opinion, including to people with M.E.
Disagree. What we’ve had for a very long time is ill treatment from people like Crawley, directed directly and specifically at this incredibly sick and suffering population in the guise of ‘helping’ people far less affected, and with something almost certainly completely different, without anyone with credibility standing up and speaking out with this very tone. I’ve seen enough of what’s come up until now to last several lifetimes. Exactly how much worse could it possibly get. At least with this these people know that those who have spoken out against PACE and this ill treatment and actually achieved something in the way of being taken seriously are not willing to respond politely to yet more ill treatment. I fail to see the downside.
Remember, there has been no criticism of PACE that they have been willing to characterize as ‘informed and fair,’ and that goes back more than 6 years now. We’ve all heard the stuff about researchers being deterred from engaging in ME research. In my view that’s always been the result of the words and actions of people like Holgate and Crawley (lack of funding, ‘death threats’) than because of the ‘tone’ of PACE critics. Sorry.
Only those who utilise questionable research practises (cherry picking, HARKing, not adopting the best practises of the field, who don’t believe in scientific transparency) are being discouraged.
Researchers, who conduct high quality research and maintain transparency including psychologists such as Leonard Jason are strongly encouraged by the welcoming response by patients. Seriously, ask them if you don’t believe me. It is only a small minority of researchers who refuse to listen to the needs of patients, who refuse to adopt best practises who are being criticised.
I agree with you regarding suing her or not, on all counts. At one point I might’ve rolled my eyes and added that individuals’ heads are so thick that no negative act by an ally, no matter how base, can get through to them. However, I do think that the hammer-meets-nail repetitious approach is working. You can’t but hear that PACE is a disaster so meticulously explained on so many fronts before you’re confronted with the truth. It’s not solely good reasoning that wins in the end, but persistence plus good reasoning.
” Prof Crawley’s science is tested through the demanding procedures that all scientists must face when seeking grant-funding and publication in leading journals. The high quality of her research is recognised by her peers”
Mmm Holgate might live to regret saying that with the presumed knowledge it might make the public domain. Definitely backing the wrong nag.
Does the “CMRC Executive Board” for which Prof Crawley “has the full support” include the charity organization members?
A group that has already received at least £25,000 in funding (an initial £5,000 from the MRC with the likelihood of additional funding, and £10,000 each from Welcome Trust and an arthritis research charity) ought to be legally constituted.
What a non response, all issues side stepped.
The problem with EC is that her work is harmful not helpful she tells parents that their child becoming bedridden is not an unexpected result…..appears unaware of the dangers of over exertion…………
The only people the psychiatrists work helps is themselves and their own careers, that’s my opinion.
Dr Holgate…If you’re truly interested in helping patients… then how about giving the psychiatric angle a rest!! It is only mildly helpful at best to a small minority of patients…even if you accept it was not a doctored, bias, dishonest study. And it was.
Dr Holgate if you are using the results of the PACE trial in determing how to help patients and plan research… and you accept those results… including the sham of a peer review it went through… without looking at the study itself and all the facts currently available with critical eye and paying attention to the many valid critisms endorsed by many scientisits now as of 2017… you are anti-science and lazy! That is my opinion.
Just because it was pubished doesnt make it good or scientific. Just because those involved with it say it is scientific doesnt mean it is. Come on… is this what science is in 2017??? If the authors own, original criteria for recovery had of been used and not changed after the trial began.. the science showed GET and CBT are not effective treatments. But this inconvient fact was discarded by PACE and was not published. Isnt science all about publishing all the results.. even those that disagree not only in the interest of scientific integrity but more importantly getting to the truth… which is the purpose of science. And in what scientific study would publishing all results and strict objective criteria be more important than in PACE where the hypothesis and effectiveness of treatments is highly controversial?
Anyone that says they are just trying to help patients with science… while pointing to PACE as their science… is not helping patients. PACE is biased dishonest science that got the results it set out to get! Anyone appealing to the authority of PACE awith its subjective defintions of recovery themselves.. through to weakening the recovery criteria after trial begins.. to not publishing what the results of treatments actually would of been had they used the original recovery criteria… smacks of bias and docotored science bent on getting the result needed to validate the lifes work and reputations of the individuals involved.
I am reposting my comment which, again gets flagged and deleted by disqus. Virologyblog could you consider choosing another system for comments.
The only people the psychiatrists work helps is themselves and their own careers, that’s my opinion.
Dr Holgate…If you’re truly interested in helping patients… then how about giving the psychiatric angle a rest!! It is only mildly helpful at best to a small minority of patients…even if you accept it was not a doctored, bias, dishonest study. And it was. And also while youre at it.. how about not standing behind someone who is creating the false impression that patients themselves or others like David and other actual scientists… are anti science for their FOI request etc… and that anyone who disagrees with the psychiatrists are just trouble makers… trying to attach a label to them without actually addressing the criticisms themaelves that these patients, scientists and others are making.
Dr Holgate if you are using the results of the PACE trial in determing how to help patients and plan research… and you accept those results… including the sham of a peer review it went through… without looking at the study itself and all the facts currently available with critical eye and paying attention to the many valid critisms endorsed by many scientisits now as of 2017… you are anti-science and lazy! That is my opinion.
Just because it was pubished doesnt make it good or scientific. Just because those involved with it say it is scientific doesnt mean it is. Come on… is this what science is in 2017??? If the authors own, original criteria for recovery had of been used and not changed after the trial began.. the science showed GET and CBT are not effective treatments. But this inconvient fact was discarded by PACE and was not published. Isnt science all about publishing all the results.. even those that disagree not only in the interest of scientific integrity but more importantly getting to the truth… which is the purpose of science. And in what scientific study would publishing all results and strict objective criteria be more important than in PACE where the hypothesis and effectiveness of treatments is highly controversial?
Anyone that says they are just trying to help patients with science… while pointing to PACE as their science… is not helping patients. PACE is biased dishonest science that got the results it set out to get! Anyone appealing to the authority of PACE awith its subjective defintions of recovery themselves.. through to weakening the recovery criteria after trial begins.. to not publishing what the results of treatments actually would of been had they used the original recovery criteria… smacks of bias and docotored science bent on getting the result needed to validate the lifes work and reputations of the individuals involved.
Lets see if this genuine post and second attempt to post my comment which i spent some time writing gets posted or whether disqus flags it as spam again despite it being a real person spending real time (and valuable time as they are sick) contributing to the discussion.
I don’t think you have to prove harm in the UK, if the libelous accusation suggests you are unfit to do your job. And she rather did that by accusing you of libel. Hence the burden in the English court system would be upon her to prove that you libeled her. Though I certainly do understand and respect your decision to avoid litigation. Again, thank you for your ongoing support of the ME community and the scientific scrutiny of these fraudsters.
The point made by Holgate that EC posts research in peer-reviewed journals is misleading.
Years later we are still waiting for the results of the trials of SMILE (Lightning Process) and MAGNTA (GET) despite many requests from patients via Freedom of Information requests.
Finally a place favoured by EC for the papers she does publish is that fine biomedical periodical, the Journal of Psychosomatic Research.
If you want to email your concerns to Prof Holgate, his email address is sth@southampton.ac.uk
Luke, you make some excellent points, all of which I whole heartedly agree with. Your arguments are on a par with David’s. It is terribly frustrating that despite overwhelming support for David’s work, you, I and everyone else is getting fed up with being constantly stonewalled by those who should no better, or probably do, but are too afraid to say so. I wonder what would happen if one of these chaps actually decided to break ranks? It seems that no one so far has either the courage or the conscience to do so.
Phrenology was once considered rigorous science. Spontaneous Generation, Luminiferous ether . ‘Tis a dodge.
Holgate’s disappointing response is at best “circular” (saying something is X doesn’t make it X, logic 101?) at worst circular and hostile to patients (he believes PACE is good science?!?) and, in between circular and showing a level of cavalierness, inappropriate for discussing a disease where millions of people are…suffering and dying.
In any case, circular.
However I think the ostracization and crazy “treatment” in the media which patients have been subjected for pointing out fatal flaws in PACE and prior for objecting to the evidence free “psychogenic model” (but it does save the insurers dollars, and pounds, rather than help those poor disabled “little people” survive) won’t work so well on journalists, fellow academics, and other scientists.
From just a historical perspective it is sickening to think so many would rather a huge number of innocent people suffer horribly rather than to abandon their class and group affiliations.
“Pay no attention to the man behind the curtain” didn’t work in 1900 and certainly shouldn’t work in 2017!
Do you know that Esther Crawley is speaking to day at a conference in Royal Devon hospital? What will she say about you this time.? Please continue to speak up for us. I would be classed as avoidant inactive by the PACE trial authors. What an insult!
David tuller continues his well written/well spoken response to a global epidemic that is steeped in disrespect towards a suffering patient population. — Rivka
We need to write to each ME charity involved in CMRC and ask them to withdraw support unless Dr Esther Crawley steps down. I think Dr Stephen Holgate should go as well
If we all stopped funding the various ME charities perhaps they would withdraw support from CMRC.