ME Research UK withdraw from UK CFS/ME Research Collaborative

Barry53

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What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
Hence why I said "then better it disbands". But whatever the new organisation, it would have to be good enough and promising enough to tempt the really genuine/decent researchers away, and leave the rest to stew in their own juice and just decompose or something. And hopefully funders would begin to see sense. But then, I always was a bit of a dreamer! :rolleyes:
 

snowathlete

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Well done MERUK!

They show courage, integrity and a commitment to good quality science.

There are two others, of course, whom we need to hear from.........................;) Will they make a stand against poor science and those who sell patients down the river for the sake of their own personal empire? :confused: One won't, one might :cool:
I agree. Action for ME won't leave, they haven't changed so until the situation becomes completely ridiculously untenable they will remain. They'll probably leave at the point where it is clear it is disbanding anyway, try and claim they are doing the right thing at that point but basically when it makes no actual difference anyway.

MEA may leave...but I think it is difficult for some to admit on a personal level that they were wrong and those who have been telling them so for years were right from the start. MEA joined for all the right reasons and have all the best intentions, I am a fan of a lot that they do, but joining the CMRC was an error in judgement. I don't think anyone is interested in saying I told you so though, people just want them out and collaborating instead with people of the right caliber and attitude. I am sure it will happen eventually. The sooner the better.
 

Countrygirl

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I agree. Action for ME won't leave, they haven't changed so until the situation becomes completely ridiculously untenable they will remain. They'll probably leave at the point where it is clear it is disbanding anyway, try and claim they are doing the right thing at that point but basically when it makes no actual difference anyway.

MEA may leave...but I think it is difficult for some to admit on a personal level that they were wrong and those who have been telling them so for years were right from the start. MEA joined for all the right reasons and have all the best intentions, I am a fan of a lot that they do, but joining the CMRC was an error in judgement. I don't think anyone is interested in saying I told you so though, people just want them out and collaborating instead with people of the right caliber and attitude. I am sure it will happen eventually. The sooner the better.
Well said, @snowathlete !. My thoughts exactly. The MEA deserve our support, but in the case of the CMRC they were misguided, although their intentions were honourable but they made a serious misjudgement in their assessment of EC's capabilities, her lack of integrity, the degree of her unprofessional conduct as well as that of her mentor, champion, defender and very good friend, Holgate. His brain appears to be switched to the 'off' position when in her presence . It is a toxic partnership made in Hell given the damage caused by her promotion of phoney science which is at aimed at building a personal empire and for which a very sick community is suffering,
 

deleder2k

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Didn't FITNET use self-rating of being 'fully recovered' for their recovery outcome? There are odd things about FITNET, and no difference between groups at LTFU, but it's a more complicated case than PACE.

edit: The no difference between groups at LTFU meant that I never got around to looking closely t FITNET. I thought Tuller's post on this made a lot of good points though: http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/
Even though patients say they are "completely recovered" in a trial I would expect her to take precautionary measures; she sould say that this was based on subjective measures. She should say that patients with ME may feel better for a certain period of time, but that they can deteriorate quickly. Studies have also shown that patients rate themselves as better, while pedometer/actimeters show no difference. Crawley has been involved with ME for a very long time. I don't believe that she doesn't know this. I am sorry, but there are no excuse on how she speaks of CBT recovery.
 

alex3619

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Strikes me as they believe they don't need to know it, having accepted that the psyche actually controls everything. What's the point of we small thinkers, who insist on understanding chemistry and physics, when it's all at the mercy of the mind?
Its as though the Age of Reason is a myth. We are still steeped in magical thinking.
 

Esther12

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Even though patients say they are "completely recovered" in a trial I would expect her to take precautionary measures; she sould say that this was based on subjective measures. She should say that patients with ME may feel better for a certain period of time, but that they can deteriorate quickly. Studies have also shown that patients rate themselves as better, while pedometer/actimeters show no difference. Crawley has been involved with ME for a very long time. I don't believe that she doesn't know this. I am sorry, but there are no excuse on how she speaks of CBT recovery.
I think Crawley's a quack, and she's made even more extremely misleading claims on PACE's recovery rates than White, but FITNET can be a more complicated one. She should let people know that there was no difference between groups are LTFU and the other problems with the trial, but it's pretty normal for people to gloss over things like this. I think that many of these people have behaved so badly that it's well worth focussing attention of the clearest problems with their work and not risk making criticisms that could seem unfair for other things that they do.
 

deleder2k

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I think Crawley's a quack, and she's made even more extremely misleading claims on PACE's recovery rates than White, but FITNET can be a more complicated one. She should let people know that there was no difference between groups are LTFU and the other problems with the trial, but it's pretty normal for people to gloss over things like this. I think that many of these people have behaved so badly that it's well worth focussing attention of the clearest problems with their work and not risk making criticisms that could seem unfair for other things that they do.
I agree. To make this abundantly clear, why don't we make a a list of false statements? In that way it would be easy for outsiders to call her bluffs. We can also add other PACE people to the list.
 

Large Donner

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Large Donner said:
What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
How would that be any different to what we have now?
Well it sounds a bit of a stupid response but if it got alot worse it would be worse and if it got better it would be better.

There's zero chance of it getting better with Holgate and Crawley still and in charge and the SMC in it.

So that just leaves the option of a vote of no confidence in all three of them from everyone else inside it which will not happen, or a walk out by those who refuse to work with them both now.
 
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Esther12

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RustyJ

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A statement about the reason for their exit might have harmed MERUK'S reputation. Not everything is in terms of what's best for the patient. One reason for the exit which hasn't been voiced is that MERUK might not have been getting an adequate share of funding. More often than not these decisions are about funding, rather than patient welfare.
 

Countrygirl

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New message from David Tuller to Prof Holgate:

This evening I sent another e-mail to Dr. Holgate and the CMRC executive board:

Dear Stephen--

You recently informed me that Dr. Crawley had the "full support" of the CMRC executive board. However, now that ME Research UK has pulled out of the collaborative, effective immediately, it seems fair to assume that the support for Dr. Crawley was in fact less than "full."

Do you have any comment to make about ME Research UK's decision? Given that your claim of "full support" for Dr. Crawley turns out to have been inaccurate, can you explain why you used that phrase? Did you actually canvass the entire board to ensure that every single member supported Dr. Crawley?

If not, why did you decide to make that claim?

Look forward to hearing from you.

Best--David

David Tuller, DrPH
School of Public Health
Graduate School of Journalism\
University of California, Berkeley



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Hope he isn't holding his breath while he waits for a reply.:whistle:
 
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Hutan

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The list of the board members I saw left me a bit confused as to who the board actually consisted of. The charity rep members seemed to be listed a bit apart from others.

Maybe the answer to David Tuller's question is that there is the CMRC Board and then there is the Executive Board. (And just maybe the Executive Board consists of Holgate and Crawley, making it rather easy for Crawley to have the full confidence of the Executive Board ;))
 
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Interesting thought. If the old organisation is rotten beyond repair, then better it disbands, and something new and much better is created instead. Just need to be sure the rotten bits of the old setup get nowhere near the new one ... not quite sure how that could be ensured. And stays independent from the SMC.
I do not see any problem here. CMRC has never really been of much interest to the international research scene. It seems to be a club for people who think they can get funding by being chummy with the right cronies. The 'rotten bits' have no clout outside their own club. We already have an international venue at the IiME conference and a European network with Euromene/Emerg. I was not so much suggesting a new venue for collaboration as a new impetus for collaboration at the existing venues.

The CMRC never existed as a formal organisation - as Holgate himself said. It is neither a national professional society nor a formal funding body nor a charity. It has turned out to be a bit of a joke, with mediocre projects scratched together for political reasons. It was built on a competitive 'us and them' philosophy, not on collaboration. It sounded posh and people were induced to join, particularly charities, but it had no substance. The conferences were useful in bringing new people together, but the politics got in the way.
 

Ysabelle-S

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I'd like to see all the charities pull out, though I don't hold out much hope when it comes to Action for ME. Everyone needs to stay well away from the SMC and their associates. The ME Association may have joined for the right reasons, I don't doubt it, but the CMRC needs to be dismantled. The patients will have more confidence in things taking a new direction if the charities leave. ME patients are always having to settle for scraps at best, and somehow be happy with that. We have exactly the same rights as cancer, MS and AIDS sufferers. We should not tolerate ableism and discrimination in medicine. Nor should we tolerate inappropriate and dangerous 'therapies' based on farcical studies like PACE.
 
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Who/what advises the U.K. Government on CFS/ME?
The UK government does not take advice on ME as far as I know. Health is a matter not for the government any more but for the National Health Service, which is now considered by the government to be responsible for its own decisions - so that it can be criticised by the government for getting them wrong. There is no longer any central health policy of the sort we had with the Central Public Health Laboratory Service for infectious disease or even regional health authorities. Everything is a free for all.

The National Institute for Clinical Excellence decides on treatment policies available on the NHS but again is nothing much to do with government. It recruits 'experts' according to the usual sort of network but mostly takes evidence from drug companies. There is probably an unusual conflict of interest for ME in that the people giving evidence about treatments like CBT are the same people as the 'experts' critiquing the evidence.

As far as I am aware the CMRC had and has absolutely no influence on any of this, though some of the people involved in the CMRC may have.
 

rosamary

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The UK government does not take advice on ME as far as I know. Health is a matter not for the government any more but for the National Health Service, which is now considered by the government to be responsible for its own decisions - so that it can be criticised by the government for getting them wrong. There is no longer any central health policy of the sort we had with the Central Public Health Laboratory Service for infectious disease or even regional health authorities. Everything is a free for all.

The National Institute for Clinical Excellence decides on treatment policies available on the NHS but again is nothing much to do with government. It recruits 'experts' according to the usual sort of network but mostly takes evidence from drug companies. There is probably an unusual conflict of interest for ME in that the people giving evidence about treatments like CBT are the same people as the 'experts' critiquing the evidence.

As far as I am aware the CMRC had and has absolutely no influence on any of this, though some of the people involved in the CMRC may have.
Thanks.