Search results

This is the contents list for the WRAP - it’s basically a workbook for the patient to fill in. Bold is my emphasis, the more unhelpful sections IMO Contents Page Section 1 Things...

I just use a wellness wheel. I’ve changed a few of the topics a bit.

WRAP advocates exercise, alongside lots of things pwME can’t do like talking to someone (sarcasm! I often can’t talk) It’s very much not specific to ME, I thought NICE 2021 had guidance that clinicians aren’t supposed to recommend standard courses/treatments that don’t take ME into account...

Anyway I have a philosophical strongly-held belief, not merely an opinion, that I deserve treatment for my ME which is biologically tested and medically proven to work I want NHStreatment which is not BSP or psychological...

Ask David Putrino, he’s collecting my (and others) visible wearable data.

Wow wow wow @Trish excellent sleuthing. I’m available if anyone needs me to - get things mixed up, moan, have a general suspicion “somethings going on”. Otherwise, here cheering everyone on!

So was it the MEA mixing them up by quoting TIMES in an article about Gladwell CFQ and Tyson PROMS? my head spins.

Hang on I’m confusing myself there are 3 projects Gladwell’s review of Chaldea Fatigue Questionnaire TIMES PROMS Gladwell https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2335861

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.