by David Tuller, DrPH
Well, not in those words, of course. It was all very polite. But that was the message.
Hereâ€™s what happened. On Monday, I posted an open letter to the members of the board of the CFS/ME Research Collaborative. The letter involved the false accusation of libel that the CMRCâ€™s deputy chair, Esther Crawley, disseminated against me at a conference of renal experts two weeks ago. Because the accusation involved a blog post I wrote for Virology Blog, the accusation of libel also extended to Dr. Racaniello, who hosts this site.
I sent a link to the open letter to Stephen Holgate, the CMRCâ€™s chair, and other members of the collaborativeâ€™s board. Dr. Holgate is a public supporter of Dr. Crawleyâ€™s workâ€”he appeared with her at a press conference organized by the Science Media Centre to promote her latest venture, FITNET-NHS, a trial of online cognitive behavior therapy for adolescents with ME/CFS. (I wrote about this flawed proposal in the purportedly libelous blog that Dr. Crawley displayed on screen during her infamous presentation to the British Renal Society. In that post, I criticized Dr. Holgate for supporting Dr. Crawleyâ€™s research, given that she has a tendency to conflate â€œchronic fatigueâ€ and â€œchronic fatigue syndromeâ€).
I did not hear back after e-mailing the link to the open letter. However, Dr. Racaniello received a cryptic response from Dr. Holgate, apparently in error. It popped up in his in-box shortly after I sent my e-mail about the open letter to Dr. Holgate and other CMRC board members. After receiving my e-mail, Dr. Holgate sent the following message to the CMRC board members:
Friends, I hope you do not feel it necessary to respond to this.
I had ccâ€™d Dr. Racaniello on my original message; I presume thatâ€™s why he received a copy of Dr. Holgateâ€™s e-mail. I wrote to Dr. Holgate, asking if he sent the e-mail to Dr. Racaniello in error, or if it was an indirect way of letting us know the CMRC would remain silent. I soon heard back from Dr. Holgate. He explained that the questions I have raised â€œare not the businessâ€ of the collaborative, which after all is a â€œvoluntaryâ€ group and has â€œno official standing.â€ He told me I needed to pursue any concerns through â€œother avenues.â€
So that is the CMRC chairâ€™s response to the news that his deputy chair falsely accused two other academics of libel at a professional gathering, at which she also appeared to be advising medical professionals on effective ways of avoiding their legal obligations under the freedom of information law. Dr. Holgate apparently feels this has nothing to do with the CMRC itself because it is just a â€œvoluntaryâ€ group with â€œno official standing.â€ (What does that mean? â€œOfficial standingâ€ with whom? The CMRC has enough â€œofficial standingâ€ to organize conferences, issue statements, and have a board, which includes a deputy chair who makes false libel accusations Â and a chair who doesnâ€™t think thatâ€™s a problem.)
Apart from her defamatory libel claim, Dr. Crawley also appears to think that the filing of freedom of information requests related to ME/CFS is tantamount to conducting a harassment campaign. And she continues to make this ridiculous argument, even though last yearâ€™s First-Tier tribunal decision on one such request dismissed this claim in harsh terms. With all due respect to Dr. Holgateâ€™s assurance that Dr. Crawleyâ€™s actions have nothing to do with the CMRC, Dr. Crawleyâ€™s leadership role with the group has been well promoted. It is natural for observers to assume that she speaks for many if not most of the other board members, especially when she talks about research into ME/CFS.
Unlike Dr. Crawley, the rest of the scientific world is moving fast in the direction of open access to data. Although Dr. Holgate believes the CMRC has nothing to say about Dr. Crawleyâ€™s recent performance, other board members should certainly speak up if they donâ€™t agree with the deputy chairâ€™s view that freedom of information requests constitute harassment. And if they donâ€™t think Dr. Crawley should disseminate false accusations of libel against those raising legitimate and still-unanswered questions, they should speak up about that as well.
It is hard to understand why Dr. Holgate and the CMRC board think the public or funders should support a research collaborative whose co-leader falsely accuses critics of libel and publicly advocates shielding trial data from scrutiny. I do hope Dr. Holgate and his colleagues find a way to improve on their current non-response going forward.
In the past the CMRC charter included a clause banning people who ‘harassed’ researchers – although those who harassed and stigmatized patients were fine. I would have thought that accusing yourself and Dr Racaniello of libel would fall under this. They did recently get rid of the clause but Holgate’s action does suggest that he is backing a particular view rather than being concerned about having an environment ensuring the open exchange of information on ME research.
I suspect that his e-mail to the other committee members was to ensure that no response was given.
I emailed Action for ME for their response to Crawley’s actions two weeks ago, seeing as they continue to work alongside her and mention their work together in their recent magazine. I’ve yet to receive a response. I guess they’ve just lost me as a supporter, and I won’t be recommending anyone else does too!
The Opposing MEGA petition is still up and running for those who haven’t signed yet and
who are starting to understand why we object to Crawley leading “ME”
research in this country. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
Adrienne Wooding says
What does Bristol University think?
Amanda Yeardsley says
David, please keep up the good work and the
pressure. Today, the quote below appeared in an ME group I am part of. So the PACE authors still assert that their research is sound, despite the scientific evidence to the contrary. This means patients in the U.K., under the NHS are still potentially being damaged by this bad treatment; still standard under the NHS.
“Just went to my CFS clinic to be told the PACE trial is right. She saw the author of the paper at a conference and he apparently claims he redid it and the outcome was the same. Isn’t this the guy that fudged criteria for it to fit his hypothesis? The same one who claimed no damage or adverse effects on patients? And now I’m being told to walk 5 mins a day every day and to increase activity by 20% each week. England has some bad advice.”
Scott Simpson says
It is truly bewildering how Holgate, Crawley and their ilk continue to receive research funding. Thank you David, for exposing the systemic flaws in the health care and research systems and the people sustaining the harm people living with ME experience as a direct result of their sham research.
Keep tightening the screws David, so we can have ME research free of these self-serving psychobabblers.
Yeah Right says
Funny when Holgate pushed J Edwards (and IiME) with a letter about being disappointed that he/IiME were not supporting MEGA. Seems he was happy enough to infere then…
Oh, wait, one rule for the psychs and one rule for everyone else as usual! Unless of course Holgate (and by inference since he brought up the issue of contacting JE, Charles Shepard) actually want to admit they side with those researchers and doctors who sneer at ME patients and say “nobody likes them anyway”?
Fiona Symington says
I am pretty flabberghasted. Your blog post merited a considered response. Holgate’s reputation can only be damaged by this. Dr Holgate, if you read this, I expected better.
Not this again says
Adrienne Wooding says
Should I just toughen up? How to deal with anti-science
Speaker – Esther Crawley:
Maybe the since EC is a Senior Research Fellow at the NIHR they might be interested?
Are you rethinking legal action yet? Might be the only thing that gets through to these people, it’d stir up the media too.
Lady Shambles says
” soon heard back from Dr. Holgate. He explained that the questions I have raised â€œare not the businessâ€ of the collaborative, which after all is a â€œvoluntaryâ€ group and has â€œno official standing.â€
Given that it’s difficult to distinguish / disentangle the MEGA proposal from the influence of the CMRC (http://www.megaresearch.me.uk/why-we-need-mega/ ) , I wonder if Wellcome (who turned down the preliminary application ) are aware that the CMRC has ‘no official standing’? It might colour their judgement when assessing future applications?
C'est la mÃªme says
The lack of genuine communication is the cause of continued friction. I guess Holgate wants the flames to continue.
Stephen Wright says
“Friends, I hope you do not feel it necessary to respond to this.”
this sort of bunker mentality is the antithesis of the type of open debate needed in science. How have I and fellow sufferers of ME found ourselves in this gutteral position occupied by some of the worst examples of scientific gerrymandering…thank god for the few people who are ready and willing to clear out this clogged up fetid blockage of self-serving plutocrats.
Anton Mayer says
Please take legal action if you can. I know it’s a lot to ask but it seems to be the only way to break through this entrenched belief that criticism of any CBT/GET study is unjustified and equals harassment. Patients deserve a research scene where the best ideas win – not where the wrong ideas are protected with smear campaigns against critics.
Update: I have received an email from Action for ME, and I’ve copied some of it here:
‘I understand you have concerns about presentation Prof Crawley recently gave to the British Renal Society. However, Action for M.E. had no input into this presentation and none of our team were present at the talk, so I cannot comment on its content.
We continue to support the work of MEGA, to which Prof Crawley and a number of other scientists and people affected by M.E. contribute, because we believe that large biomedical studies like this one are essential if we ever hope to make a significant and lasting improvement to the lives of people with M.E. ‘
I don’t want anything else to do with them now.
Lady Shambles says
For those who would like to see the back of the CMRC (possibly most patients) hasn’t Holgate actually done this for us by demoting any sense of it having anything other than a ‘voluntary’ pals-in-the-pub ‘get together’ with ‘no official standing’? Did’t he just let go of the tent pole while we were all watching?
Paul Watterson says
I have often said that living in the UK with M.E. is like living in the book 1984 or a Kafka novel. It’s so unfair it’s surreal. These people are not scientists and not interested in truth, they have their own agenda and their own little circle jerk where they all tell each other how right they are and when criticised they freak out and say it’s harassment and libel. Yet they are frauds, it’s there for all to see. They say people with M.E have “false illness beliefs” yet they are the ones with no grip on reality.
I bet to a real scientist it all seems kind of unbelievable too. We have lived with these people running rampant for years with their dirty tricks, it’s fantastic that other scientists are seeing them do it now. Othet scientists are not the easy targets for their smear campaign that patients are.
They, AfME, have also been dragging their feet on responding to the recent open letter that David wrote and many other scientists and patients bodies signed – https://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/
To date, despite many requests, they still haven’t announced whether they support the letter or not, perhaps they are trying to employ Holgates tactic of “if we say nothing then perhaps they’ll all go away”…
Paradigm Change says
I was very unhappy to see this article today by the Cleveland Clinic’s head of functional medicine, Mark Hyman, suggesting that exercise is always a good thing for people with “chronic fatigue syndrome.”
The level of misunderstanding of this disease that is out there as a result of these UK psych studies is appalling.
I wonder what it would take for Dr. Hyman to be persuaded that he is wrong about this and that he is providing dangerous advice to the people whose health is especially fragile to begin with.
Thank you for your work, David.
Lisa Petrison, Ph.D.
Paradigm Change says
I don’t see a way to comment on the article, but here is Dr. Hyman’s FB page.
Wendy Boutilier says
I’m going to venture out on a limb here but the behaviour being displayed is akin to a feral animal in a corner. I know everyone can’t graduate at the top of their class but “Crawley” should have taken the opportunity to either speak to you directly in a reasonable educated tone or speak to her lawyer about issuing a letter if she honestly believes “Libel” is a concern. I’m disappointed with Dr Holgate’s response as well. There’s no transparency with this group.
I hear that the General Medical Council who regulate her licence to practise and the University of Bristol who employ her and pay her salary have “official standing”. You should make an official complaint to each of them.
Joan Byrne says
I sincerely hope that the patient organisations, at least, who are members of the CMRC respond to this. They are the very ones who purport to represent the interests of people with ME. If they don’t they should hang their heads in shame at their betrayal of the very people they were set up to protect, support and represent. I’m looking at you ME association. Time to stop the double speak. Collaborators are NOT neutral and cannot continue to claim the moral high ground for ‘the greater good’. If the patient organisations withdrew their support and made a public statement, this house of cards would fall. They are the ones keeping it upright.
This behavior is anti science.
Olivia Beatty says
Does anyone know if any UK journalists will be attending the Iime conference in June.? There might then be a chance to get some media coverage.
Lou Corsius says
In the world of PACE and surrounding research, nobody seems to realize it’s getting worse and worse.
On the other hand apparently they can do what they want. What consequences will they be confronted with?
The scientific world in the field of medicin and health psychology seems to have no power to correct them. I have learned the past year that the scientific community lacks courage and has a great tendency to protect those who do not deserve to be protected because of their scientific misconduct. The protection of a scientific carreer allbeit one of misconduct and fraud seems to prevail over patients health.
Action for ME are refusing to comment on it, and therefore don’t believe it is an issue.
It is just appalling to see a professional body conduct itself in such a sloppy, dishonourable fashion, to then think these same people bear any responsibility for the health of a neglected patient community is utterly chilling. These people ought to be ashamed. I am so grateful to David and the virology blog for their commitment to truth and doing the right thing in the face of this dreadful treatment. I really feel they should Sue Crawley and we should all fundraise to pay the bill for it at this stage.
Richard Smallfield says
Well said, Stephen. There’s nothing scientific about gerrymandering. I honestly wonder if these people have actually read the study and the critiques. If they have, then they can’t be genuinely deluded that they are right. They have to be dishonest.
Richard Smallfield says
They constantly talk about themselves when they talk about the ME population, saying things like ‘the patients aren’t being heard’ – when it’s them and the Science Media Centre who are the ones doing their best to suppress facts with propaganda. If there has been harrassment, why don’t they give us evidence? I don’t know anyone who would be inclined to harrass anyone, but maybe some people have been so frustrated and been feeling so ill that they did do so – it’s regrettable, but understandable. I know that I can be quite rude to people when I’m sleep deprived. But they constantly smear us all, generally with vague, dishonest generalisations. I’d better stop ranting at this point. It’s 7:18am and I’ve had no sleep.
Yes, that’s what I was going to say, you need to go direct to her employers with this. It seems Holgate does not give a sh*t, I’m not surprised as he seems to think EC is wonderful and can do no wrong. So many over the years seem to be protecting her, she has connections in high places in the GMC, any complaints from patients against her are just swept away. I am quite surprised you aren’t going to sue David, she has been treating patients like this for years, but she should not be allowed to get away with accusing a professional such as yourself of libel, that in it’self is libellous isn’t it?
EC is blatantly insulting and smearing ME patients, yet AfME say it’s nothing to do with them? It bloody well ought to be! Every patient org and charity should be furious and taking action now, I get angrier each day at their continued refusal to stand up for us. What is the point in most of them?
A reminder that #MEAction is NOT Action for ME. I’m not working with them right now, but every time Action for ME did something crazy, we got some seriously angry emails…
I commented there.
The rest of the advice is not bad at all.
The problem is that he makes it clear that by doing all those things, he cured himself. I’m much improved by doing all he mentions, but not ‘cured’. What a shame to make such overt promises of health to sick people if they “eat right” and sleep and take a small handful of supplements.
Most of the patients I know are taking everything he’s recommending, doing everything he’s recommending, and then some. We’re all still sick, even if what he recommends would allow a patient to make a QOL gain.
I’ve thought about this re: would it be worth it if I were David. I’m not sure. The argument for doing so, as far as I’m concerned, is that someone random can see insults against his character and, not knowing the full story, make a decision that affects David’s livelihood. In that light it’s worth doing.
On the other hand, if David were to sue Crawley and lose, it would give her SO much support for saying that she is being *unfairly* targeted. Suing also costs money and time and I presume it’s incredibly stressful.
Star Man says
Hyman completely rewrote his blog article without even noting it was changed. Pretty sneaky.
The original version recommended interval training, sports and dancing as treatments for CFS.
Paul Watterson says
in the same way Trump is gaslighting America, we have been gaslighted by these frauds for years
Milo Paradiso says
What Holgate wrote was patronizing. “Say nothing, or else…”
Penelope Jane McMillan says
If CMRC have “no official standing” how can they operate at all?
To me, this is a very important statement and should stand as a warning to anyone dealing with them in any capacity, particularly anyone considering offering them support of any kind.
AfME has been crap for ages so no surprise there.
I’m more disappointed in ME Association, I’d thought them well meaning but inept. Not so sure about that first part any more.
It’s just so convenient to Interchange “chronic fatigue” and “chronic fatigue syndrome” special interests at its worst… their ship is taking on water fast. The question is who will abandon ship and who will go down with it. Australia, Japan, Norway and many other countries are conduction real science while Britain is wasting taxpayer dollars with nonsensical pseudoscience. Such a shame.
Brenda Vreeswijk says
How deep do they need to dig to disappear at all? If they have “no official standing”, what kind of institute is this? They way they treat this problem is ,yet again, very unprofessional just like everything around PACE . Well one thing is very sure, they opened up the door completely for you to go ahead with whatever you’ve planned. They even put a pretty bow on it …
Good luck with your presentation…it a very sad thing that they think they have so much power to step on everybody who has a different opinion than theirs. Even more sad they’ve been getting away with it for such a long time. Never mind the victims they made on their crusade.
Olivia Beatty says
I think the only way to expose this scandal is to get a journalist interested. The medical profession will always protect it’s own.(I used to be one of them!) Surely someone must have such a contact???
David – I hope you’ll respond to Dr Holgate to ask what kind of a message this ‘voluntary’ group sends out when the Deputy Chair seemingly violates the only membership requirement set out in its’ Charter, and the Chair’s response is that this is “not the business” of the Collaborative?
From the CMRC Charter:
3.2 Membership Requirements
Good scientific debate promotes and drives the highest quality of basic and applied evidenced-based and peer-reviewed research in to CFS/ME and is actively encouraged by the CMRC. This includes respectful debate and objective, constructive criticism in order to encourage critical
thinking. Channels for â€˜goodâ€™ scientific debate include writing letters to journals, asking questions, using established legal channels.
Lady Shambles says
Tuller is a journalist. I suspect the difficulty in disseminating the story is battering through the Establishment ‘lock down’ on anything that smears the BPS party-line.
Lady Shambles says
Exactly. My feelings too. Holgate has pretty much demolished the CMRC with those very words..hasn’t he?
Debbie Smith says
I wonder if a letter signed by the eminent scientists and clinicians at IiME this summer could be sent to MRC, Wellcome. NIH,GMC, Bristol Uni …. re the libel and dissing patients?