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it'll be lovely wont it. 15 people in a room - 4 with mild ME/CFS, 10 with CF all chatting together & 1 with moderate end of severe ME almost collapsing off their chair with the effort of holding themselves upright & the sensory overload of people talking.... "I find yoga helps me" "you just...

yes i actually didn't notice that. I thought i'd clicked on all the links, but actually It also links to an article about 'attitude' on the rehabilitation link. There is a totally inappropriate & frustrating TATT link too. I obviously didn't check the links very thoroughly the first time around...

Indeed. It all reminds me of an episode of 'Yes Minister'. Somebody will be appointed to a 'quango' soon :rolleyes: :bored: :banghead:

https://www.gq-magazine.co.uk/article/chronic-fatigue-syndrome-everything-you-need-to-know Not too bad i thought. Of course not perfect but I thought it pretty reasonable in comparison to many media articles. At least it's tone is reasonably respectful/sympathetic to the sufferer. Edited to...

:jawdrop::laugh::laugh::laugh::laugh::rofl::rofl::rofl::rofl::rofl: Oh that did make me laugh @Jonathan Edwards, i needed that tonight, thank you:D But HV's tweet itself is comical too, it's absurd - can he not hear himself, he's doing a Sharpe, unwittingly tweeting things about himself/his...

I'm a bit fed up wth the MEA over their social media policy too - not issuing warnings etc (as in my post above) But, while i think they have a blind spot over this particular issue, it's my overall impression that CS works very hard indeed fighting our corner, with the likes of the DWP, NICE...

Sometimes a hot bath makes me feel significantly better, sometimes much worse. It does help with pain while i'm in there, oh god it feels so good! and afterwards for about 30-60mins i do find it all around quite 'reviving' even if it exhausts me. What i mean by that is even if it uses up what...

well i got protagonist.... which reading the description, is completely wrong. I've done this, & slightly different but based on the same idea, tests about 10 times over the last 20yrs, 15yrs ago it was all the rage in the corporate world, & i suppose it still is. I've done the MB test 5 times &...

I can clearly see your post @Andy & we're not fb friends. BUT i had to change the fb settings from 'most relevant' - where fb chooses which comments to display, to 'new comments' - where all comments are displayed in chronological order. I'm in favour of them posting everything. But I find it...

I'm afraid i've not the strength to read the whole thread so apologies if i repeat or go off track. But I couldn't agree more. I think a 'name & shame' website, although possibly useful for some things, would be a massive own goal. The very last thing we need imo is somewhere else for the...

oooo you wouldnt want to do that <sharp intake of breath> ... that'll be boom & bust n you want to avoid that! for anyone unclear that was sarcasm. Interesting article.

Exactly. I couldnt walk 500mtrs in 6 days. It took me a while to understand the chart because of that. My SF36 is 10-15 on a good day, & my maximum distance, at al,l (never mind in 6mins) is 46mtrs without collapsing. This is up & down the garden. And despite making the trip as often as...

This. And the rest of whats been said by JE in this thread re non blinding & subjective/objective measures. I could rave on about all the pernickety bits that irritate me in this scope doc. But if our response made this point CRYSTAL clear i think it would be very good. I know there is loads...

Eww eeww eww eww EEEWWWW! What on EARTH are the NHS doing getting 'into bed' with these people. I don't know much about the OHC but the Chrysalis thing... ugh. Just revolting.

@kmclellan Hi, I probably shouldn't have posted last night as my comment doesn't make a lot of sense, i was struggling & i probably could have worded things better. Non of what i said was intended as an insult to you personally, it wasnt meant as a 'low blow' - as i said i applaud you for...

Indeed. What we want is something that is actually 'evidence based'. And when we say 'evidence' we mean high quality, scientifically sound EVIDENCE. That's why we are so "negative" about PACE.... we are simply pointing out that the evidence for what we're being given is rubbish. That is. The...

Ok so i a bit foggy so will just give first impressions... sorry they are 'whats wrong' rather than what's right, because thats just what is jumping out at ame as i spot errors easier when i not at my best. 12.5% - The thing about falling asleep, i dont sleep in the day, i wish i did. Severe...

Very, very good. such a good precis of the issues

Precisely. I do think it's poor for a doctor of his status, standing, influence & power over whether his patients receive such benefits, to not be aware that PIP has nothing whatsoever to do with whether someone is fit for work or not. Its about the extra financial burden of being ill/disabled &...

Wow @Dx Revision Watch this whole situation is deeply disturbing & scary & it just stinks that a few patients/advocates - mainly yourself & Mary Dimmock as i understand it, are having to do all this massively complex, confusing & seemingly never ending work. I cant keep up with it at all, you...