Yes indeed, as people get more experienced they learn to be more tenacious with their envelope because the world has been taught (explicitly by...
I don't fully get that - is it delayed too? I mean it takes years for most to pick up on PEM anyway even when it is a massive crash - simply...
If the ME Association secretly funded these people just as one final 'let's give them a go in good faith to get the proof they can't/won't change'...
I think, apart from the questionnaire being far too long, the choice of responses ambiguous and various other problems, the main problem is it...
But none of them are under the GMC? I mean technically the clinics should be staffed by a non-psych clinician, but that's another conversation,...
Oh Peter I hope that all goes to plan for you and that she has a wonderful wedding. :) And yes, Precisely. That's exactly what I mean by their...
Yes indeed, I think they get an idea enough about how horrid the condition is from people just describing the impact of a few example activities...
I know exactly how it will be used. Instead of looking at overall exertion, the thing that matters, you will have those whose entire focus at the...
As an example if some app like Visible suddenly announced it was selling pwme data to eg Sharpe, Chalder, Wessely or White everyone would be...
I'm worried about this because I'm coming at it from a professional perspective. In seeing how apparently under some dodgy excuse (I mean really...
NOONE should be required to have that level of intrusion in order to access ‘medical care’ I’m sorry but we’ve been walked into an utter horror...
AS IF their email claiming ‘used fir other chronic illnesses’ isn’t a lie here that’s a major ethics breach. There is no way people with MS or...
And yes if they aren’t providing either the same correct terms for why people can’t or the extent of adaptation and having to live with a half...
Me too but the more I think about how dangerous this is… It is using a distorting framing which will distort what someone’s disability and...
:thumbup: Agree, there is a difference between getting people qualified to and interested in speaking to the 'overall' vs just getting a few...
Every good research should know that you begin with exploratory focus groups - or in this case adapted so they could have taken in the first-hand...
they don't even seem to have noticed the possibility of increased activities and duties related to actually being ill. Like ringing for...
using an incomplete list masquerading as a choice of them using a list to replace asking people directly what % of what normal people have energy...
what on earth is it that they think this illness actually is?
Agree, and I thought that most indeed have variations on this. I'd go as far as it seeming 'contrived' to the idea that only exercise 'counts' as...
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