Search results

Yup the CAB gave me nonsensical advice which meant I had to study, and redo, and now my pip history is full of junk I had to row back from.

Ive recently located a warm swimming pool I’m going to try, I’m very much a water baby and never happier than in water. I used to find that when I got out of a pool, the gravity really hits me like I’m made of lead. Not met anyone else who has that sensation. Always took me a while to adjust...

You can claim attendants allowance after pension age.

It’s exactly like ill health retirement criteria, there’s no known treatment or cure and it’s not terminal therefore it cant be “known” that you will never recover. Would it really be so difficult to do a longitudinal study on pwME? Just survey loads of people who have had it for over 10 or 15...

It’s just the same as the PIP, rehashing things to save money whilst spinning that it’s “helping” the disabled. As usual most people exist in the grey area that allows individuals to be assessed by an assessor, who makes some kind of decision in isolation. Then it appears when lots of very...

Yup, Visible runs along these lines. There have been at least two papers based on Visible and I think last years one was trying to make very strong claims about predictions. I put my visible data in AI to analyse and I have a clear 2 day lag for PEM. Maybe people really are all individuals...

In summary, it leads one to wonder what use such a study would have. Tome it feels like a new type of bashing-implement.

I think (IIRC) the daily ready score thing in Visible looks at the past few days/week data after your morning measurement. The reasoning being that because we have PEM it’s useful to know if your system is starting to struggle/go out of sorts. People seem to frequently misunderstand or want to...

Not sure how I feel about this. I know HRV variation is part of the Visible monitoring and daily “readiness” score, and that high HRV is a good thing. This study sounds like it was done on the general population and low HRV is associated with “less favourable behaviour profiles” alcohol use...

Isn’t there quite a strong pwME community in South Africa? Interesting to see the heritage split between white European heritage and black African.

I think this is interesting also because it’s got a lot of possible cultural bias such as certain groups having preference for using ME/CFS as the search term, or increased media and campaigning in the UK and USA. One interesting comparison might be Australia - a lot of UK and Irish ancestry...

I think it’s an interesting side quest to think about. According to my Ancestry data I’m hardly English though, very Celtic but then again I am a little bit Norwegian, so that must be who is to blame! I can’t remember which parent that came from, I must check. I thought DecodeME selected...

I was surprised Workwell Foundation wasn’t cited, but maybe that’s because it’s specifically ME/CFS, and they only cited two papers I think. Workwell - that’s the basis for Visible.

ME Action posted about this. On Facebook, I. Mentioned on he UK thread. They asking people to contact their MP to table a health question asking why, by midday 26 March (tomorrow )

From ME Action on Facebook The DHSC has said it will “pause” on commissioning Severe/VerySevere Services until at least April 2027 Reasons include NHS England closing and ICB changes. ME Action are asking people to contact their MP by midday 26 March (tomorrow) to table a health question...

Sorry, I meant they would say the post would have to stand in across the whole of the psych services at times, not just the ME part, so basically they mostly do ME - but not exclusively.

Does anyone remember 2-3 years ago, the MEA went through a phase of spotting this type of job ad/person spec and writing to the Trust about it? It happened a few times in what seemed like quick succession. I think most of the time the response was that the lead clinician would have to fill...

He’s always been a speed demon. Allergic to speed limits.

Thanks @Hutan for acting so quickly. With the Sennyd having ME/CFS debate, and the plans to make an NHS service for ME in Wales and talk of wanting a centre in Wales, this is really worrying that Psych’s are getting in early and it will be another disaster for pwME.

An interesting situation, has he publicly disclosed at all? Otherwise it’s pretty low to report it far and wide from a disclosure made to very low level court (presume the public gallery was listening).