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Hmm I've just read: Thirteen participants took part (seeTable 2) before the COVID-19 pandemic stopped delivery of the face-to-face seminars where participants were recruited: sufficient datahad been collected to constitute a round of cognitive interviewing [26] So this was already looking...

Anyway, is it possible to analyse this from the perspective of it being done by the people who were planning on saying there is a need for PROMS and what they planned to put in said PROMS For example, what is in the PROMS vs what the CFQ measures and whether either are really doing something...

This surprises me again, because I would have assumed a focus group or some sort of working group - or if interviews that they would have at least seen the questionnaire on paper in full to be speaking to it. There seem to be a lot of instructions and aspects that might be deemed to be helpful...

OK so this paper is highly pertinent as its conclusions (and intro) state this makes the case for 'PROMS' being needed. Although it doesn't actually, it just critiques the issues with the CFQ as a measure. And discussion of the flawed areas would have been more insightful from a retrospective...

EDITED to add: :thumbup: indeed. But, a bit worrying, as others have mentioned that the bit they are testing is just the 'feasibility and acceptability' of the programme. So rather than not spotting the issue is that the treatment doesn't work if the improvements aren't long rather than short...

And very weird choice that they always choose to go with subjective, having decided that any answer is no-win for disabled person except for their body magically becoming undisabled. I'm starting to see through all of these things as just hands out for funding on the gravy-train. they aren't...

Totally agree with that last line. Too true @It's M.E. Linda ! The whole thing is also, however, definitely about having series of egg-timers whilst you are doing anything and having to learn to make judgement calls on what matters to get to the end of the series of things. Knowing 'that'll...

:rofl: and phone autocorrect 'auto-wronging'

Even down to a man [from the MEA] kindly writing that aren't they being generous picking through with her to help her to decide which comments they deem 'constructive' after words that were coercive to ensure noone felt comfortable replying, nevermind the "shut the heck up if you are even...

and those are treatments of course. which have had proper trials in the first place/are known to be safe and have stats already for those who will go into them. so it is monitoring of the delivery of something known to work. with reasonable guidelines being followed for an actual treatment...

Thank you. So the same fundamental error : not using or looking at long term outcomes, isn't what this is going to do well at all And there is no back-up plan even realising that if you don't make clinics useful you are just using the Krypton Factor again to claim 'people have improved' when...

Indeed. I am trying to work out whether the ends are just not meeting due to [EDIT: my] lack of vision and it needing tweaks, or really what this says it can do is potentially covering one thing at the expense of the most important thing? Should this be called 'the clinic assessment...

my first concern is that for those who are severe, very severe and in a relapse then the questionnaire absolutely needs to begin from the principles of the length and specificity of the questions meaning noone is filling out any more questions than absolutely necessary. WHich I don't believe is...

I worry that this is treating still potentially the condition like it is managing 'something chronic' but without the illness part. And potentially 'rehabbing without treatment first' which was what the flaw of the old guideline was and why it was so harmful. Like treating cancer with marathon...

Today I'm increasingly despairing of how the dangerous issues with those very severe haven't had someone/anyone realising it is a crisis of safety. And am so conscious of the 'moments of truth' situation that I think ME has which is where really I think the best and most urgent thing a service...

I think this issue and what is or isn't need for this (new?/ extended?) remit is worth circling back to as a discussion. I'm trying to mentally work out (difficult here because I tend to be pictoral and like a good diagram) what that means this underlies/underpins and where this sits . Is this...

Interesting list. The drop-out issue is one that fascinates me for the CFS research: using the treatment itself as a filter for survival of the fittest. I can't think specifically of what I'd state we'd be looking for there. I'm assuming some of the focus is on outright 'made it up by filling...

Just looked up: A new community rehabilitation and reablement model (england.nhs.uk) and not feeling hugely reassured by "Guiding principles The guiding principles of the new model are: • People requiring community rehabilitation have access to the appropriate level of expertise, based on...

so has this anything to do with the working groups supposedly happening/related to the APPG and following up on implementation for the Nice guidelines? or is it a case of whilst that gets procrastinated then the same people in NHSE just roll out what they wanted to do with us anyway and then...

One thing that intrigues me in discussion of the 'rule-in' signs and calling them 'positive signs' is whether they are actually rule-in and not rule-out? Wikipedia description of Hoover's sign: "Hoover’s sign of leg paresis is one of two signs named for Charles Franklin Hoover.[1] It is a...