I think the document is good, it’s what patients but not really AFME themselves have been saying for years. The international influence looks...
The study was an important one for the community , problems arise, you overcome them afaic. I think having a researcher generally not ME...
Xyrem is used in USA I thought , at least for fibromyalgia. It’s supposed to give the deep restorative sleep whereas many sleep meds don’t provide...
https://www.actionforme.org.uk/uploads/images/2018/12/cmrc-board-minutes-nov-2018_2.pdf Highlights are establishment of working groups, no...
“After decades of knowing about this illness, we have nearly nothing meaningful to show for it. Not because we’ve investigated it thoroughly and...
I think JN is too happy t associate with these people and is ambiguous in her papers and approach to exercise, eg at a recent CMRC she was...
That’s slight fudging is why some people don’t like ccc criteria and the fudging is worse in Nice Criteria which don’t mention pain as post...
Maybe I’m being a bit dense in this and part of it is because most of the studies are on ambulant people. What I mean is, whilst the research so...
I am not scientifically trained but what struck me flicking through other guidance to compare to our own was how science and drug focused they...
They could have said , we would only fund 4 research centres rather than the ten possible because we refuse to put much money in special...
So in 2007 the behavioral stuff passed the initial good quality evidence criteria ? I want to know how many of these meetings dr S is attending....
So the lady isn’t a pwME but an academic? What inspired her involvement please ?
So afte thirty years of existence AFME decide its time to get serious on biomedical research so we can begin to understand ME. Their quality of...
I thought we had been told ME could t be lumped under MUS? Or were we asking for that. This seems to be an area to lobby on. I think Rona MM is...
The MS complaint is specific to NICE refusing to fund one drug due to cost effective issues which they rightly lobby on. Its different to the...
I think economic figures speak more than suffering too. I saw MEA saying they’d invested £1m in research , I assume overall over twenty odd years,...
Going from the last debate there wasn’t anywhere like the depth, detail or complexities / nuances we as patients are discussing here, it was much...
I agree funding for research is as much an issue and we tend in UK to focus on bps issues more. If the MRC has committed £1m / year since 2002...
Great. As this is a rare opportunity and we agree theres lots of areas needing progress and MP intervention could help, I still think the APPG...
The main ME organizations seem to take the position of countess of marr above, it’s not too bad now let’s get in with it approach. The only groups...
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