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It’s not deserving just because we can’t raise ourselves it’s because of the levels of disability, cost to economy, affecting people in prime years etc. To me it’s just statistics, we arent raising the cash and I’m guessing more recent years are the best ever for us. If people sat round and...

I didn’t know where to post this I just did a bit of easy research on charity incomes via http://beta.charitycommission.gov.uk/charity-search/ It allows you to type in charities to see their most recent annual income. Most illnesses have one or two main charities so I don’t include all the...

Is there evidence there’s too much adrenaline? A little bit of deconditioning doesnt cause the ME symptoms, I wasn’t seriously decinditiond for years, although I am now, that didn’t stop any of my ME symptoms which were there from day one, many still here Day one zillion and sixty If they...

What I quoted was from a blog written on the 2013 CMRC launch when there was supposedly work streams and priorities. As new ones are launched I was highlighting that the old ones didn’t get us far. The Biobank including pwSME in a general ME project is good but isn’t anywhere near enough for...

From 2013 https://www.meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/ “Getting down to work: Funding and more The Collaborative is setting up four ‘Workstreams’ to get things done. Little was said about three of them – Publicity...

So what happened to the working groups that were set up in 2012 ?

Well who are they trying to please who are they trying to kid

I think the document is good, it’s what patients but not really AFME themselves have been saying for years. The international influence looks strong but mainly uk and USA formulated? I can’t understand BACME signing a document which is critical of the criteria and approached they themselves have...

The study was an important one for the community , problems arise, you overcome them afaic. I think having a researcher generally not ME interested might mean the less of a fight ?

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 that. It would be interesting and I’m amazed they couldn’t recruit the full tbh.

https://www.actionforme.org.uk/uploads/images/2018/12/cmrc-board-minutes-nov-2018_2.pdf Highlights are establishment of working groups, no conference next year, the high level report is on hold, the priorities partnership meetings have begun, the MRC have asked for further submissions regarding...

“After decades of knowing about this illness, we have nearly nothing meaningful to show for it. Not because we’ve investigated it thoroughly and come up short, but because we haven’t really begun to try.” Pitiful truth.

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 supportive of the poles doing a get trial, and hinted that the lack of patients knowledge/prejudice about it over there might be interesting

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 exertion effect. I think how my ME presents post exertion is nothing like excess fatigue and I dislike the conflation. I think it’s much better expressed...

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 far could be sufficient to suggest why we are ill, weaker, not functioning well, worse with exertion I am unsure we have demonstrated why severe ME can...

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 were. Our illness not having a biomarker or established tests or any medical treatment is way behind. Other illness without effective medical treatment...

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 circumstances for CFS and want things to just grow from what we are doing, albeit much more slowly than necessary. Hard cheese on those already neglected for...

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. I see no reason not to lobby on mus and Iapt in the meantime, as the nice thing quietens for official stuff. I also think we should be lobbying on...

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 recording doesnt improve