Without fatigue or post-exertional malaise, if you feel willing to share, why would you say you have “mecfs”? Are you saying that it’s more...
Practically everyone I’ve heard of from my generation, sick several decades, were told to either push on; do graded exercise therapy; avoid...
Merged thread I agree The ME association prints lots of questionable stuff but... Where is the evidence that these seizures are not or should...
The ME association has membership of around 2% of the affected population vs Parkinson's and MS charities that have membership that amounts to...
It would be interesting to know what other research The ME association has felt “needs doing” so as to approach researchers directly, over the...
Jo platt statement re. Long covid appg. My main concern in having an ex long COVID sufferer run both, is having ME/CFS and long covid needs &...
Haven't The ME association got what they wanted, a focus now on the allegations regarding money and framing this as the nasty subgroup making an...
This, like the WASPI women announcement left until the very end of the year. Neither charity has posted anything yet
There’s a choir called voces8 who have albums with some very soothing pieces eg the seals lullaby. I find human voice like that or Enya good.
I hadn't realised Chronic Fatigue syndrome had been established in the UK by that date. I went to my dr asking if I had m.e in 1994, after being...
Nath seems openly still only interested in early intervention/ prevention and seems to be happy, as probably lbh many are if unchallenged, to just...
Not exactly m.e is defined by post exertional malaise and As physical as a broken leg is it.
He did publish a very similar one that got terrible reception previously and was well aware, by the sentences written, that this would sometimes too.
Yes, still , Rory is only one so far not to mention m.e & he chooses that totally apolitical statement , a guy whose job and media activity is...
interestingly the charity commission upheld no charges against the former version of The ME association in 2003, according to this...
I didn’t think that’s how it worked at the Appg AGM but I really have no idea
Does this mean there’s been no formal meeting of the trustees since the last AGM?
The MEA aCT AS if THE past 20 - 30 years of awful NHS management, pushing people on a downward spiral didn’t happen & an issue for those with this...
Some can. I have a normal care agency. It’s just run by a nurse but the care team do my tube feeding, meds and order my meds. And there is of...
Given we’ve had an APPG since 1998 With limited success - primarily 2 general reports published saying similar things ~ 20 years apart - just...
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