I hope it is OK for me to put a direct link to this facebook post here: (1) ME Association - Patient Reported Outcome Measures (PROMs) in... |...
I think it is worth emphasising that it isn't special to either us or the condition so I think we are the 'round hole' and PROMS was a very...
I think she really only had the intention of 'managing that stakeholder'. And if not, then coming up with an excuse why not including them was...
I have just seen that the link to the facebook post from ME Association is here: (1) ME Association - Patient Reported Outcome Measures (PROMs)...
Indeed. It is pretty close to the rehab after a knee op focus of moving through box-ticking can someone walk up stairs, walk down stairs, walk...
Very good comment - I hope that it does have an effect. I've come to the conclusion from this activity one that it is purely in the misnomer of...
Just to try and stand back given everything going on currently. Is it 130ish members in BACME? So maybe 130 staff members to re-educate /...
As it is about 'measuring delivery' and doesn't seem to care about 'how' you get things done, I assume it is to be used as a fake KPI to pretend...
Because they've mixed up concepts they've missed what is a pretty common thing which is that for most people with ME/CFS they will not have...
There is a point to note about workload (of doing the questionnaire) and its validity in relation to these also. People use scales normally when...
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...
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