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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...

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...