Well at least that's one way of getting some research on bedridden people which we can apply to the neglected community in me/Cfs. I've been...
I disagree. I think Nice criteria were an attempt too keep CFS vague once Oxford was being discredited. It's the criteria of choice for Crawley....
Someone just posted this on the ME association Facebook page which I've copied. (Thanks to long-term campaigner Anita Roddam for this find and...
True but they're also strong on the infrastructure, info and advocacy side too but often their posts on Facebook just get a handful of comments, &...
MERUK have had this sort of thing going in some form for some time I think.
Perhaps , and I include myself in this, we should get behind SMCI a bit more as a community too. I tend to focus on changing the negatives,...
A real shock and a real blow. No information given as to why or where he's going. Maybe the field was too frustrating but I thought he was making...
Great news, MEaction are a great global force for change. Maybe it will help the #millionsmissing hit harder
Mark Edwards is now quite a big player in the CMRC. I can't remember much about the study, discussed months ago, but I do know @Jonathon Edwards...
Well if CFS was just chronic fatigue.... I'm not going to say the study will find nothing useful or is bad but I'm not convinced the researchers...
NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research...
I can assure Barts would be the last place I'd want to model good ME Drs on!! The idea would be that NICE would limit GET /CBT recommendations...
I will just add that I want NIVE to either remove GET/CBT or limit its That's interesting. My own CFS service locally gets nothing like this...
Dr bansals severe patients are sad for their loss I've read. Bansal going is pretty much the old wave of experts nearly gone ...
I have severe ME and there really does need to be some guidelines on it Drs can refer to and the severe do really need expert Drs to manage...
It might not have been ME related but financial.. How is it acceptable to not commission services when the NICE guidelines state that they're...
I guess that's what was referred to in the discussion with funders. I think they received £1-200k from a specific donor
What planet is dr shepherd on here He doesn't mention pain in his description- not me, but for many its a huge symptom He talks as if our MRC...
Yes fair enough. The positive is that IIME has quite a lot of money (depending to a part if they can keep their philanthropist donation too) to...
It's a size thing isn't it. If there's a small study originally, a larger study still funding much of the same, with some edges rubbed off is good.
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