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Well, yes I do think they’re very obviously related TIMES started in Manchester where Tyson is based What a sticky mess

I think - confusingly- two quotes were from Gladwell’s report (TIMES) and the other two were from Tyson’s PROMS The whole article is a hodge-poge back and forth about the two very separate works actually

Me and Lc are basically the same thing, apart from when they’re not. It’s important to group them together but keep them separate. Long Covid is fertile ground for reintroducing BSP concepts at which point the sucesses can be mapped across to pwME to start similar treatments.

If the NHS wants ME PROMS, fine. I think they’re redundant, but that’s their business. I don’t see how it’s £90k of the MEA’s biomedical research fund’s business.

The NHS is barely serving people with Cancer, we shouldn’t really be surprised. Someone asked me today- what Consultants are in my local clinic and if I could see them. I laughed! I don’t know where in the UK has consultants running ME clinics. Not anywhere I’ve lived.

How do I get in on this Research thing? I don’t want to be paid. I just want to publish a paper supporting my point of view, after surveying about 10 of you on this thread.

It’s formatted fine for me. It’s the categories they’ve chosen to “blur” that’s confusing.

This MEA scale is confusing https://meassociation.org.uk/wp-content/uploads/DISABILITY-RATING-SCALE-APRIL-2024.pdf

A researcher with ME is not a synecdoche anyway. When I was mild, 8 had no concept of what it was like to be moderate. Then I got severe, and still had no concept of what it’s like to be moderate. Now I’m moderate, I have some understanding but wouldn’t dare assume I can represent mild or severe...

Nice idea, but still needs washing every day!

Dr David Putrino is using Visible data for research. Apparently Visible has become the largest dataset in the world for biometrics, symptoms and interventions for Me/CFS. Imagine that, a whole big ME dataset. Just floating about for anyone to research.

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...