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I have to wash my hair otherwise my scalp cracks and bleeds, so I have to wash every day. I wear pyjamas every day, change once after shower. Only have easy food unless someone cooks or delivers. Ignoring the washing just doubles the next days!

I once used hypnotism to cure a phobia, and calmly chanted myself into actual danger whilst not being “afraid” of something relatively harmless, failing to look at the world around. I’ll stick with my fear, thanks.

It’s the mystery of the “baseline” isn’t it. According to Visible app, and the workwell foundation paper it’s based on, my baseline is far lower than I would have imagined. The BPS GET model of do what you’re doing now but add a 2k walk on top (because life is the same every day, of course it...

It’s just a crazy revelation, too. Everyone “should” be doing much less than we’d think, for our own good.

Amen. at the risk of going circular, I am an unreliable narrator however my Visible and my Fitbit give me an at-a-glance graph/data/csv download of if I’ve been doing a lot (for me), or not. And I write in how I’m feeling every day too. It’s almost like a huge, accurate, objective, reliable...

I suppose it’s useful in a way. I have a guideline which shows what is “too much” whereas usually people assume you’re doing nothing because you don’t work.

Yes, I tend to have to “prep” in order to have a “day off” I don’t know why I thought it would be easy? My allowance is enough to look after myself - wash and dress, put the washing and dishwasher on and empty them, grab snacks and drinks and use the bathroom. It’s not enough to also put stuff...

Thanks, I’m not great with the quotes but this is what I was saying. Anything can be “evidence” a photo of my unmade bed can be evidence. Not “good” evidence. Not “accepted” evidence, but sure, submit it. It’s hardly a good reason for these questionnaires/PROMS to exist. Gilding the Lily (or...

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...