Slightly confused given their links to ME Association why they are reinventing that wheel when MEA have done a lot of work on collecting people’s...
Yes @Ravn good point as a gradual onset PWME I had a spell of a few years where I caught every cold going I used to have to carry cough sweets...
@rvallee it appears to have been on BBC world however not the main BBC news content aimed at UK audience
The fact they were forced to start the NIH studies has saved them from looking really stupid in the face of people like Paul Garner talking about...
Heads I win tails you loose - again
@dave30th
‘Nice’ patients v ‘nasty’ patients Good grief
Sticking my nose in From this side of the Atlantic isn’t there an ME group in Massachusetts that’s pretty good on the advocacy side? Maybe they...
It must be a bit difficult for anyone with long Covid on social media - not groups open posts - when people with ME engage with them then a bunch...
Interesting development. The remit of oversight organisations like ombudsmen commissioners etc isn’t necessarily set in stone. No reason why in...
Ugh
thanks for updates @Andy my Brain not in gear at the moment so I’ve cancelled my booking so appreciate the opportunity to catch up later. The...
Hopefully Carol Monaghan and ForwardME charities have picked up on this and are contacting him. @Action for M.E. @Russell Fleming @EspeMor
14k plus in a week is pretty damn good
It depends on the group leaders. The pace lite message is subtle. I only fully understand some time afterwards that despite being aware of...
Fair point
Unless it is someone who is prepared to be an agent of change doing a bit of challenging the status quo from the inside.
So it is indeed completely useless - at least a bag of tripe has a potential use
Ok not as helpful as when a comment is added and you can retweet that but good her followers may have seen.
That’s the AFME tweet not Miranda Hart’s
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