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Yes-that’s it thanks. edit to add -point 2 of Sarah’s reply “at no point…research outcome measures” In the MEA news item yesterday, I think it said the PROMS can be used in research as a secondary function? See yellow underline Also in green- can be used as evidence for benefits/workplace...

Oh he’s really going for it. I don’t think they’re going to do an inquiry into themselves, give it another 20 years so the plausible deniability looks reasonable, maybe some key players are dead.

It’s all a bit much for me just now, but there was discussion with Sarah Tyson about some question having an answer along the lines of some, moderate, massively, etc and posters worried that those terms mean different things to different people, so it wasn't an objective or clear...

So it seems Gladwell was working on this report, evaluating the Chalder Fatigue Scale, prior to the pandemic. Luckily, it’s shown that it has issues which could be rectified by PROMS. Just as Sarah Tyson and Gladwell are weeks away from releasing their new MEAQ as part of their PROMS. Neat.

Statement by Sarah Tyson

A report is out https://meassociation.org.uk/2024/04/patient-reported-outcome-measures-proms-in-me-cfs/ just going to read it This is Gladwell’s Chalder Fatigue Scale review. https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2335861 Ethics granted 2018 edited

I’ve been making an effort to try to do one day per week under my daily allowance. Of course, I could always alter the daily allowance myself, but I know I need to do less, and rest more. I’m finding that easier than logging every little activity, to be honest. I’ve seen now what each regular...

I hate that it looks like they’re going to go through what we went through.

Currently on MEA’s insta stories - the name in the link says it all https://www.cidrap.umn.edu/covid-19/no-need-avoid-exercise-long-covid-diagnosis-researchers-say a whole 31 patients. 77% of whom were women (23.8 of them)

Good to know

Side-question Did PACE ever address sex differences? I only ask because I become very exhausted when I have a period. That’s always been the case, and is for many women I know who might drop a run or gym session, have an early night etc. were we supposed to increase activity during that time? A...

But Sarah Tyson said he is a “good bloke” who “gets it”. I think a side-by-side of this PROMS against NICE 2021 guidance will be needed, I feel there will be anomalies. And the horse has long bolted on these PROMS, delivery is due in weeks. Excellent sleuthing @bobbler and @Maat

Somewhere in the NHS PROMS info, they said the data identified recovery time was quicker where a certain brand of replacement hip was used, so then other clinics changed to that brand. Still sounds a bit more “work appraisal” than “biomedical science”to me.

I was rooting around the published accounts, I see the MeA also employed an additional short term employee to “embed” the 2021 NICE guideance Edit- I can’t find that reference now...

I feel like they aren’t being transparent. Because they’re not.

I think there are at least two different things happening with this issue and this thread. 1. The MEA have funded Tyson et al to do a piece of work, apparently in relation to a gap identified by the NICE guidelines (core data set? we aren’t sure) developing PROMS to be used in NHS ME clinics...

Aren’t many ME clinics staffed by OTs and Physiotherapists anyway?

I’m convinced (my opinion only) there is more to this, the PROMS will be used in the Long Covid clinics and in a few years the NHSwill be crowing about how it runs such great ME &LC clinics.

Definition of madness, doing the same thing repeatedly and expecting a different outcome!

I feel like the “and long Covid” part of this whole thing is relevant, too.They’re rapidly being chucked in with us and having some tick-box “82% of patients improved” PROMS outcome, because of course the numbers are a “blend” of physical and emotional improvements I hope I’ve paraphrased that...