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It’s ok, they’re going to email everyone who takes the survey again, in a couple of weeks. Why? “To see how answers change over time” apparently. But it is an “at present” snapshot of an average day this month. And they want to see an “at present” snapshot of…the following month? To see what...

Actually, what did they base their design on? For this latest questionnaire? It does read like they’ve just thought it up in a meeting, rather than basing it on actual fact/research. And speaking about “re invent the wheel” these questionnaire, they are being created so there’s a data set...

I’m level 4 but only moderate ME

Also, I don’t see the difference between level 3 and level 4? they’re the same except you need assistance when going out of the home,

I’d say they can’t use those questionnaires, they’ve asked people to tick that they’ve read the info leaflet, you have to do that to complete the questionnaire. And the leaflet was inaccessible. Once they know of this problem surely it invalidates the surveys taken without seeing the required info?

So any questionnaires completed when info sheet was unavailable must not be used, surely?

So in summary 1. Patient info sheet is inaccessible 2. Errors in questions 3. Length of survey is unacceptable 4. Survey plus length of other two surveys (TIMES and I forget) utterly unacceptable

The relevant “regulatory authorities” would seem to be GMC https://www.regulated-professions.service.gov.uk/regulatory-authorities/search?keywords=&industries%5B%5D=d84877ce-0a33-4ebf-a267-964201e0a039&industries%5B%5D=47929243-04e6-422e-b28c-6f5d3c7facde

You know how I don’t know a lot about science or research, so this might be a daft question, but what account is made for cognitive dysfunction? I’m not always a reliable narrator.

The wording in full - also “where it is relevant tome taking part” it’s really odd wording. I tried to open the patient info sheet but I don’t have a MicrosoftOffice subscription at present. I would have thought a pdf would have been easier all round?

Do they mean the University’s “regulatory authorities” or what? Who are these regulatory authorities? Info Commissioners Office?

And most decode me participants found CBT unhelpful and GET And that’s the end of the presentation.

So in the presentation Chris Ponting is explaining the patient involvement in amending a particular question wording, because PEM is worsening of various symptoms, not “worsening of fatigue” as the 2021 BACME document says….shows the doc on screen As the young people say - mic drop/shade/burn...

Absolutely! I’m totally projecting. Iam interested to hear more about item 1 - the social care pilot

ME Association Statement: Improving healthcare for people with ME/CFS and Long Covid May 14, 2024 The ME Association is committed to working with the NHS and social care providers to improve healthcare for people with ME/CFS and Long Covid. We believe that everyone, regardless of where they live...

The “buying adspace on GP surgery screens” was a bit of a “sharp intake of breath” but I guess it is raising awareness. The bitter neglected by the medical establishment side of me says “don’t do it! Don’t ask a GP if you might have ME! Your card will be forever marked” but that’s just me and my...

I saw this story today https://meassociation.org.uk/2024/05/me-association-statement-improving-healthcare-for-people-with-me-cfs-and-long-covid/ interesting trial they are doing in Buckinghamshire with NHS and Social Care

Nor are woodland activity adventurers.

Bringing over from a thread about BACME Tyson and Gladwell due to speak at conference about their PROMS on 16 May

Ha ha ha ha That’s made me feel happy I can no longer work I no longer need to take part in such psychobabble “away-day” offerings