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A refreshing change!

I think with the Ill Health retirement it’s linked more to insurance, it’s more similar to “would a private insurer pay out in these circumstances” rather than your employer/the state/the NHS recognise you’re ill. Many people were working for the public sector so it can seem a bit unusual that...

See that’s fair, it deserves some proper investigation. It’s more deserving than the endless re-investigation of perceived personality “flaws” as a cause/cure.

Is the suppression of trauma and emotions as a result of GET and CBT? Sorry, I’ll write that scientifically. “Therefore this paper shows that the suppression of emotions as a result of GET and CBT causes brain changes” you don't need actual research data for scientific conclusions, do you? So...

Yup - scuba diving. It’s not as if he was housebound or bedridden leading up to it though. I tried Scuba in the past but wasn’t taken with it. Is there any science worth examining in the relationship of the oxygen delivery, or delivery under pressure (as you are underwater)? People are always...

You were lucky to get it, I only ever seen people get 50% for 3 years then review. Or nowt. Slightly more recent than you though, post PACE.

The levels of whataboutery when medics don’t want to deal with something or don't know enough are huge.

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.