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So there has been PROMS questionnaires callers TIMES, PASS and now MEAQ one thing I will say is I believe Sarah Tyson does have ME, by the way these things are written it reminds me of my final working months. Disorganised thoughts. Hard to make a point clearly and concisely.

I was diagnosed with Fibromyalgia first, I have no idea whether I really have it though. I have pain it waxes and wanes. Who knows? I’d like to see more about “health fatigue” although, (again, one to hide from the Behavioursaurs in case they hijack it as being evidence of effort preference or...

So much info about pacing is minimising the importance of it , there’s always a bit about how it “helps you do more” or some success where someone can have a day out walking or something. None of it helps you manage your realistic factual responsibilities and ADLs I’d honestly like to see a...

Most of them think pacing will lead to allowing them to increase activity

Within one year, at least 50% of the women will sigh if you say “have you tried yoga/pilates/going vegan/keto/fasting”

A high % have been advised to start antidepressants and/or talking therapy

There’s a fair few complaints on the MEA Facebook post, Charles Shepherd has been replying, holding the line.

Don’t forget we have the emotional support thread that was started after Sarah Tysons comments upset people. I just keep thinking, only 1 year until Decode ME

DEID means dead if you’re Scottish!

Thanks, I’ve been saying it!

I agree- white text on dark kills my eyes! Anything on an app should of course also be easily available in other formats like paper. Bit harder to print out an app version of a paper only questionnaire.

Yes South Yorks mental health has earned a place on my DNA (do NOT attend). FUNCAP is lovely to fill in, 0-5 answer levels stay displayed at the top of the page. Other NHS PROMS use an app, it’s 2024! Instead I fear PROMS will be printed out and filled in by hand…everything about it feels...

I’m sure he’s still doing his regular physical training, now he’s recovered.

I just saw the profile for Sarah Tyson on the BACME conference thread. A bit surprised she’s involved with Physios For ME as a “lay representative” as well as DoHSC plan for ME (See just above bullet points)

I said I wanted to do some reading and I have not done it (yet!) but one theme I wanted to revisit is that of the “PROMS creates a data set which can be used in research” I feel like that it was said it wouldn’t/was silent, then it has been said. Over the course of the MEA announcements and...

I don’t think that acronym would work in Scotland!!!!

I just did mine :) that’s what made me think. The options for reply are really”ME/CFS”.

Are they using the FUNCAP questionnaires? Because they’re quite good, validated and already exist

We have a fundamental disagreement about the nature of the beast, we can’t work together. Proms is a round hole and we’re a square peg.

Spot on -this is an example of the “take a “normal type person” look at what they do in a week and then look at reducing it, when really it should be the other way around, what is the minimum needed to be done (sleep, eat, toilet, wash) and scale up from there. If they scaled up from the...