MEGA’s Latest Failure

By David Tuller, DrPH

In his welcome talk at last week’s annual conference of the CFS/ME Research Collaborative (CMRC), the chair, Professor Stephen Holgate, praised his colleague and second-in-command, Professor Esther Crawley, for her “stunning” and “amazing” work on the group’s main research initiative. There was just one problem: That initiative, the ME/CFS Epidemiology and Genomics Alliance (MEGA), had recently failed in its second high-profile bid for major funding.

Earlier this year, of course, MEGA announced that it had failed in its first big effort, a submission to the Wellcome Trust. This second unsuccessful bid was to the Medical Research Council (MRC). Professor Holgate tried to put a positive gloss on things by vowing that MEGA would learn from this defeat and press forward. Yet he undoubtedly knows that applicants who repeatedly get turned down for top grants can start to smell like losers. Funders prefer to shower money on those perceived as winners. Notwithstanding Professor Crawley’s stunning and amazing work, MEGA so far has proven itself more loser than winner.

Before sharing the unfortunate news about MEGA’s bid, Professor Holgate appeared to be trying to soften the blow and rationalize the rejection by praising proposals in this emerging research field that get “to the edge of being funded,” even if they ultimately fail.

“As we start to ramp up the quality of research, you won’t just see a switch and suddenly money pouring in,” Professor Holgate explained to those assembled for the two-day conference. “You see people almost getting there but not quite, reconfiguring their applications and then coming back in again and getting it right. So this is the right direction of travel and I think it’s absolutely wonderful that we’re seeing this happening now.”

As I interpret his remarks, Professor Holgate’s optimistic view is that MEGA, after two failed bids, is now traveling in the “right direction” on its “wonderful” journey. As he explained, the MEGA proposal survived the first round at the MRC and made it to the interview stage, along with several other candidates. Then the bid lost momentum, for reasons he did not share.

“We got down to the short list, which was great,” said Professor Holgate. “We were interviewed but at the interview we didn’t quite make the cut. That doesn’t mean this whole thing is just going to wither on the vine, it means we need to take the feedback from the Medical Research Council committee, sit down, get serious about what they said, and think about where we’re going next with this. But I can tell you this is not the end by any means, we are definitely going to move forward. We just have to make sure that when we do move forward we learn from the experience and then we look for opportunities for funding elsewhere.”

Whatever. Perhaps this is not the end for MEGA, and next year will be more productive. But apparently the reviewers for two major funders have not agreed with Professor Holgate’s assessment of Professor Crawley’s work. I presume she and her team put great effort into pulling together the proposal rejected by Wellcome. Putting on a brave front after that failure, MEGA appeared determined to regroup for the MRC bid. Now the MRC has also turned thumbs down on whatever it was that MEGA proposed. Hm. Professor Crawley must feel deeply disappointed and even embarrassed—an understandable reaction, of course, after such a humiliating public defeat.

It’s no secret that Professor Crawley and I are not the best of friends. I have accused her of problematic research practices, and she has accused me of writing “libellous blogs.” I have documented my charges and backed up every claim. Professor Crawley has failed to respond to my repeated requests for evidence that anything I’ve written about her work is inaccurate. I take her silence as acknowledgement that her libel claim is false.

I wrote several blog posts about this situation. I sent an open letter to the CMRC board, chastising Professor Holgate and the other members for failing to address their colleague’s unprofessional behavior. I complained to Bristol University, since Professor Crawley made her defamatory statement about my work at her inaugural lecture there this past spring. And I recently wrote about her curious failure to seek ethical review for a 2011 study of children, using the questionable claim that it was a “service evaluation” project and therefore exempt from such a review.

Have these and other developments begun to be noticed by the kinds of people who would serve on MRC and Wellcome review committees? Would these reviewers have heard by now of the mushrooming scandal around the conduct and findings of PACE, which Professor Crawley has declared to be a “great, great” trial? Would these reviewers know that large segments of the international scientific and public health communities, including the U.S. Centers for Disease Control, have rejected the GET/CBT ideological movement, for which Professor Crawley is an ardent advocate?

It is certainly possible that awareness of these developments is slowly spreading beyond the narrow confines of those actively engaged in the debate—that is, beyond the communities of patients, advocates and ME/CFS investigators. It is even possible that these developments are starting to impact Professor Crawley’s prospects for obtaining research funding. These two recent rejections suggest that could be the case. On the other hand, she has received support for her problematic FITNET-NHS trial, so perhaps the rejections had nothing to do with the debate around PACE/CBT/GET.

In any event, the issues are not going away. Given Professor Crawley’s apparent inability or unwillingness to provide satisfactory answers to legitimate concerns raised about some of her ethical and methodological choices, she is likely to face continued scrutiny.

As I have previously pointed out, Professor Holgate and the CMRC have enabled Professor Crawley’s bad behavior by endorsing her leadership despite her high-profile public campaign to discredit critics as vexatious and libelous. However, no matter what the CMRC does or does not do at this point, the CBT/GET approach to ME/CFS is collapsing under the weight of its own absurdity and the accumulating scientific evidence. In the face of this ongoing paradigm shift, Professor Holgate’s fulsome praise of Professor Crawley’s unsuccessful efforts to seek support for MEGA seemed like a desperate effort to forestall the inevitable reckoning.

On Saturday morning, I wrote to Professor Holgate and others on the CMRC leadership team, seeking comment about MEGA. I haven’t heard back—not that I expected to. Here’s what I wrote:

“I’m writing a post for Virology Blog about some of the news coming out of the conference. So I am wondering if you [i.e Professor Holgate]–or any other members of the CMRC executive committee–want to comment on the failure of MEGA at the interview stage in the MRC funding cycle. My blog will be posted on Monday or Tuesday, so please send me back any comments by Sunday evening, California time.

Here are my questions: Are there specific shortcomings in the proposal that the MRC reviewers highlighted? Or was the interview itself problematic, in terms of how the MEGA team presented its ideas? Given that the MEGA team presumably gave this proposal its all, especially after the previous rejection from Wellcome, what grounds do you have to expect better results in the future? Do you think other funders will perceive similar issues to those that apparently proved to be a stumbling block for the Wellcome and MRC reviewers?

Do you think it is possible that Wellcome and MRC reviewers have started to notice the mushrooming international concerns around the conduct and reporting of the PACE trial? Do you think there might be growing reluctance to fund people and projects perceived to be associated with the PACE/GET/CBT school, including investigators who have declared this self-evidently flawed piece of research to be a “great, great trial”? 

I have not included Professor Crawley on this e-mail; it is my understanding that she considers contact from me to be unwelcome. But I of course would include a statement from her about MEGA in my post. I am also still interested in a statement from her about her false accusation that I have written “libelous blogs,” since she has never bothered to clear up that issue or explain her charge. So please feel free to forward this e-mail to her!”




20 responses to “MEGA’s Latest Failure”

  1. JustinReilly Avatar

    Thank you for staying on top of this, David!

  2. Robert McMullen Avatar
    Robert McMullen

    Thanks, David. I hope you are right about the reasons why the MRC rejected MEGA’s bid. History suggests that the MRC has a strone bias against biomedical ME/CFS research. Although most of us who have been lobbying for biomedical ME research are opposed to MEGA, it may be that the reviewers have made the right decision for the wrong reasons (i.e. because MEGA purports to be biomedical research and because it will be expensive).

    My suspicion is that the diminishing reputation of Esther Crawley et al among independent scientists may have little to do with the decision, but I hope I’m wrong.

    Does anyone know who the MRC reviewers were, or what their medical specialities are?

  3. Anil van der Zee Avatar
    Anil van der Zee

    The ship is sinking.

  4. Joan Byrne Avatar
    Joan Byrne

    My day is always considerably brightened when I see a new post from your good self popping up. Today is somehow extra special.. I was most heartened to hear that MEGA was refused for a second time and was frankly embarrassed to see Prof Holgates fulsome praise of Ms. Crawley at the recent conference. Contrasting the MEGA line up with other outstanding contributors like Jose Montoya for example was most satisfying to watch. Chalk and Cheese. It continues to astound me that two leading ME UK charities support this project. I wonder when they will realise that they have picked the wrong side of history to be on?

  5. Diane Kirk Avatar
    Diane Kirk

    On the ball as always David.

  6. Sheila Campbell Avatar
    Sheila Campbell

    That’s great the MRC didn’t fund it either, phew, thanks for all your efforts to thwart and expose the BPS brigade.

  7. Sean Avatar

    Crawley’s description of PACE as a”great, great trial” reminds of the way Donald Trump uses great.

    “We’re going to build a great beautiful wall.”

  8. Wendy Boutilier Avatar
    Wendy Boutilier

    Thank you David for another “en pointe” blog.

    Perhaps those who are involved in funding are beginning to realize that they cannot continue to protect reputations. They must protect the integrity of research science and maybe I’m being optimistic but I believe they are noticing exactly what you point out “mushrooming international concerns around the conduct and reporting of the PACE Trial.”

    However, the coin hasn’t dropped in the UK yet and that is a grave concern. Advocates have been posting Crawley’s achievements everywhere we can with hopes of educating those who don’t realize how dangerous these funded activities can be. Our target is friends & families who might be tempted to become involved, especially for those newly diagnosed.

    For all participants of the PACE Trial Study Enablers, Lightning Project, SMILE, Magenta, etc ….., please be advised that should you consider getting involved, your rights are not their #1 priority. In accordance with modern norms of research ethics and with the Declaration of Helsinki, researchers who conduct human subject research should afford certain rights to research participants.[1] Research participants should expect the following:

    to be the target of beneficence
    to experience research justice
    to get respect for persons
    to have privacy for research participants
    to be informed
    to be safe from undue danger

  9. Lady Shambles Avatar
    Lady Shambles

    “It is even possible that these developments are starting to impact Professor Crawley’s prospects for obtaining research funding. ” The beginning of her end….and the end of the beginning for sufferers ..maybe? I do hope so. It is at last starting to feel that the winds of change are blowing in favour of sanity, truth, science. Unfortunately we have the shambles of the upcoming SMC / Crawley / Smile event on Wednesday … hopefully it will be a useful exposition of how unscientific and wedded to junk science the SMC and Crawley actually are. History is going to look back at her tenure at the helm of the CMRC (and her other activities) with a mixture of astonishment and mirth. If the MRC has twigged her ‘manque de vêtements’ (not even a fig leave to cover her embarrassment) then she really needs some LP treatment to restructure her reality.

  10. disqus_joh5XNAv6w Avatar
    Thanks so much for the transcript of Professor Stephen Holgate’s words. Perhaps we should give him the benefit of the doubt? Perhaps he was being ironic… or sarcastic??!!As you so eloquently said, ….”Whatever”!!
    Humour always helps.

    So, I found this today, and thanks to Dilbert!

  11. Anne Avatar

    Waiting for the day when frequenting Crawley will be seen as a somewhat inappropriate and
    even quite shameful thing.

  12. Anton Mayer Avatar
    Anton Mayer

    This years CMRC conference was interesting and occasionally amusing. Dr Montoya called the framing of ME/CFS and other illnesses as “being a figment of the patient’s imagination” to be medicine’s biggest mistake. Dr Rowe criticised views expressed by White and Crawley that orthostatic intollerance is rarely present in ME/CFS and that exercise is appropriate treatment. One researcher presented data that appeared to show that the metabolic effect of GET on the patient may be depletion of phospolipids and decrease in energy metabolism. I wish I could have seen the faces of CBT/GET supporters in the audience.

    I was also pleased to see Dr Nath present the NIH intramural study.

    As for Holgate, he is aware that the US is leaving the UK behind in research, but does not appear to have grasped why that is happening. I think it’s because the biological view is finally being championed by important institutions in the US, whereas in the UK criticising PACE can cost you your job, and evidence-free bio-psycho-social models are still in fashion.

  13. Olivia Beatty Avatar
    Olivia Beatty

    Why do the charities not ask for her to stand down? Does she have to be deputy in order for MRC to take an interest? Are their hands tied?

  14. Paul Fox Avatar
    Paul Fox

    “As we start to ramp up the quality of research, you won’t just see a switch and suddenly money pouring in…” Now, let me see, was that a Holgate quote, or a Trump quote? It’s so Trumpesque that you can’t tell, can you? Perhaps I’m being a little unfair. Trump would have said “very, very” somewhere in there

  15. mesupport Avatar

    Professor Hugh Perry, Professor Julia Newton and Dr Neha Issar-Brown (MRC) finding something more productive in other projects suggests that using CMRC as a funding vehicle for the BPS lobby are also feel the winds of change.

  16. Mary Hardy Avatar
    Mary Hardy

    CMRC…..opaque as usual and no disclosure about why they failed….a very underwhelming line up of players on the MEGA team. MRC reasons for the rejection would be good to know….and what the MRC are funding?

  17. Dominique Avatar

    I’ve been wondering this very thing but my ME addled cognitively
    impaired brain can no longer express these things adequately. While having these
    thoughts, my mind wandered over the following scenario; what if the MRC refused
    funding for MEGA as it seemed, on the face of it at least pretty biologically
    centric. Perhaps the MRC might have been more receptive to esteemed established
    researchers such as Crawley had they proposed say, a trial on teenagers,
    investigating a novel intervention for ME/CFS whereby participants click their heels
    three times while pronouncing ‘there is no place like home’.

  18. Barry Avatar

    In the same way that it should only need reasonable doubt (which there is no shortage of) about PACE-style treatments, in order for them to no longer be recommended, it is likely now that funding bodies are themselves experiencing significant doubt about supporting trials affiliated to PACE in any way.

    Many thanks yet again David.

  19. Peter Trewhitt Avatar
    Peter Trewhitt

    It will be interesting to see if Prof Holgate’s unstinting admiration of Prof Crawley includes her slandering of the ME Assosiation on national radio, her continued abuse of people with ME on national radio and further problematic research this time supporting a very dubious pseudoscientific intervention with children and young people that is potentially very harmful.