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Oh yes and (sorry brain is picking up on things then train of thought spots another to summarise).. to draw attention back up to near the top of this, with the paper that included CRawley and White (2013) explicitly saying 'physical function' in the abstract conclusion: "Patients who attend NHS...

Oh yes and (sorry brain is picking up on things then train of thought spots another to summarise).. to draw attention back up to near the top of this, with the paper that included CRawley and White (2013) explicitly saying 'physical function' in the abstract conclusion: "Patients who attend NHS...

Not even read the paper yet. But even this line is just much needed, along with a half-decent term that I like because it puts the action and issue on the subject and not the object it is being done to

IN relation to the conclusion on the paper with Crawley and White (2013) , "Although NHS services are moderately effective in improving fatigue in patients with chronic fatigue syndrome, they are much less effective in improving physical function than similar treatments delivered in the PACE...

Adding up these dates. I'm starting to wonder whether instead of 'repeating' it is more 'a continuation' ie those who thought they were on the 'more balanced' side (not necessarily outside their bubble is that confirmed) were planning these PROMS because they 'thought GET needed tweaking' from...

Copied from: UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 This is an aside and isn't to do with any of the PROMS authors here, however I just needed to get it out because I couldn't quite believe it (certainly given what we...

This is an aside and isn't to do with any of the PROMS authors here, however I just needed to get it out because I couldn't quite believe it (certainly given what we know/is acknowledged now). From the Crawley and White (2013) paper: Treatment outcome in adults with chronic fatigue syndrome: a...

OK I'm chipping away at reading through this in more detail. I can see exactly what you mean about patterns emerging. And it is interesting to note that whilst PACE trial was going on there was also a concurrent trial from Crawley and White which they (I assume chose to delay) didn't publish...

And they've claimed the same thing in this paper that they claimed in the one on the other thread (2024): "Participants were a cohort of patients attending their first appointment at a specialist ME/CFS service in an NHS Trust. This service provides assessment by a specialist clinician to...

OK @Maat I have just found the thread for the one released in 2023 that was on PROMs and included Gladwell. Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell | Science for ME (s4me.info) The...

Hmm, I've found this from GLadwell and others on Full article: Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome (tandfonline.com) It says it was submitted Oct 2022. I'm...

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...