April 2018 Minutes of the CMRC meeting and latest news

The original PAG did publish the list of names of those who agreed to be known. To be a member you had to be broadly supportive of the MEGA project as it was then proposed and then they were selected. Some names I recognised , some i didn't and about a third then left I think. The new role of the PAG is quite different I think and the disappearance of Esther Crawley would make it more palatable for some but people did try to influence from within and felt they couldn't.
I still personally don't see why immediately the MRC can't put up money for a wide range of research such as what happened in Norway which is seeing us with a fecal transplant clinical trial and some good biomedical research already underway. Not this endless talks and all eggs in one MEGA basket approach and still nothing much useful happening.
 
adambeyoncelowe said:
It's sad if all the useful patient representatives resigned, leaving only the crappy ones. This is, unfortunately, why sometimes it's not a good idea to simply abandon an organisation we don't agree with. Sometimes it genuinely is better to stay within and fight the good fight (easier said than done, though--especially if the management committee doesn't listen).

That said, the CMRC should recognise that when it haemorrhages patient representatives, it's doing something drastically wrong, and look to stem the bleeding. I feel much better now they've dropped the SMC and have Chris as Deputy Chair, but getting the right patients involved would be a next big step.

Can anyone volunteer to be a patient representative for CMRC? Can we get some good people to apply?
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On the other hand, it could be the PAG resignations that helped lead to the CMRC changing direction? Having a large chunk of a group show that they'd rather walk away than be part of what is currently happening can be a powerful way of sending a message.

Also, while only using the remnants of the PAG does mean it's currently likely to be really unrepresentative, I wouldn't be too critical of them yet.
 
Anyone think the whole SMC involvement was wierd in the first place, if they're being let go now because of altered definition & independence, what was the original CMRC "terms of reference" and SMC purpose before? are they a media group "for hire", were they involved with the purpose of getting a certain line out there, were they brought in out of recognition that they controlled the science media reporting to try to reeducate them on CFS. Why did the SMC join? Do they usually join such things? out of favour to the MRC , establishment helping establishment, but it certainly didn't seem to be about getting a new narrative of ME out there and aren't they supposed to be an independent organisation? I'd understand if they were invited to conferences but they sat on the board, got involved with the CMRC website I think. Was it a Wessely connection " the SMC can promote what you're doing to make sure the world knows of the uk CMRC research effort" or is that crazy ....

Edit being reflective the SMC might do this type of supportive thing in areas of science , they might work naturally with MRC and the promotion of CFS science might have been a mutual aim , that just never worked because of fundamental SMC prejudices that we're inherently bps. Again transparency and explanation wouldn't go amiss
 
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Cinders66 said:
Anyone think the whole SMC involvement was wierd in the first place, if they're being let go now because of altered definition & independence, what was the origin CMRC "terms of reference" and SMC purpose before? are they a media group "for hire", were they involved with the purpose of getting a certain line out there, were they brought in out of recognition that they controlled the science media reporting to try to reeducate them on CFS. Why did the SMC join? Do they usually join such things? out of favour to the MRC , establishment helping establishment, but it certainly didn't seem to be about getting a new narrative of ME out there and aren't they supposed to be an independent organisation?
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Absolutely. It would be really useful to get more information on this.
 
Cinders66 said:
Was it a Wessely connection " the SMC can promote what you're doing to make sure the world knows of the uk CMRC research effort"
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Of course it was.
There is no doubt about this.
It's a victory that they have been given the boot.

Personally I wouldn't bother complaining about the wording of letters etc. or even looking for more answers regarding SMCs involvement, it's already all been well documented and now we should take it as a big victory that CMRC has dispensed of their services.
 
Cinders66 said:
Anyone think the whole SMC involvement was wierd in the first place, if they're being let go now because of altered definition & independence, what was the original CMRC "terms of reference" and SMC purpose before? are they a media group "for hire"
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Yes, it's weird until you read what the SMC actually is - an advertising agency for hire. It offers people the chance to educate the public in the right way to think about their branch of science. And the collection of 'right ways' to think about science makes pretty amusing reading.
 
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