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I’d go for a bunker. The Hobbit hole is just a slightly fluffier version. But I’ve fantasised about both for years too. Maybe one day…

I think we should just all move into Hobbiton, underground homes all on one level with nice even temperatures, not too cold, not too hot. And Hobbits tended to have plenty of nice food and pretty gardens too. Sorry not very practical… but I can recommend the good quiet fans you can get. I...

Sorry to hear that @Yann04 summer always breaks me too. I’ve not tried phase change material, just things like ice packs and frozen hot water bottles, which can obviously get quite damp, even if wrapped in tea towels.

https://www.actionforme.org.uk/the-uk-government-sets-out-its-spending-review-our-response/ The issues highlighted are being discussed in other threads but thought people would like to see what AfME posted.

I think the “yes you are really quite ill with a real thing” will change how we are treated quite noticeably, even with people who are not full on ME/CFS deniers, just ignorant. But people will always vary. And like @Kitty said things like masking vary enormously. I just ask people to do so...

Maybe it’s a tonal thing? A lot of the paper is rightfully clear about what is not known, so sentences which seem to more firmly discount an area perhaps stand in contrast to that? I’m not sure ‘consistent’ alone conveys that uncertainty. The paper referenced had a little discussion here in...

I assume they mean sufferers That’s all they say about conflicts… I hope no patient is embarrassed, desperate ill people will try all sorts and being open to ideas is good, as is changing your mind when new evidence appears. I know I’ve been through various ideas about this illness. Those...

Here’s what the Altmetric stats say It seems to have more views, downloads and a higher attention score than the Concept of ME/CFS paper. It would be interesting to hear what all those outside the forum reading it think though.

I absolutely agree. I was more contrasting with banana diet in terms of, bananas didn’t make some people worse and some people better. But I absolutely agree vaccine reactions or more generally immune reactions hold an important clue. And it’s one of the aspects that has been so frustrating to...

Others have covered my feeling that pacing is different in important ways, specifically it’s not a treatment, but I suppose you could see both as management techniques to avoid getting worse. Viruses or vaccinations are different too in that people do talk of periods of feeling better, but...

Maybe just younger, or younger onset as you say @Utsikt and that would obviously impact marriage and never working. I find the age one interesting, as I had significant sleep issues and I guess sleep reversal when younger, linked to depression. While much less so with ME/CFS which (some sleep...

I wholeheartedly agree @Trish

Probably for the best. I’m pleased they’re trying to get a message out. But hopefully for any future videos the organisation can consider if the message is intended for patients, medics or campaigning and tailor it accordingly. I was thinking about this a bit more this morning and wonder if...

Really useful insights, thanks @DMissa

Most people here probably have a good idea of the bigger research picture and I know I’ve been keenly following the work in Surrey you mention (recent discussion in this thread ). @Simon M did a good overview of the other studies a while back too. I don’t think people are misunderstanding...

But if people do want to share any questions and answers I’m sure we’d all be as interested as we would be confused ;)

Responds to deleted post There is some good information in there and clearly a good intent. But I agree in the problem with a lack of skepticism and overall way of presenting the research. It seems almost like stuff you get from LLMs when they try to helpfully cobble together different bits of...

There is lots which is very clearly linked to research, likely even quoted from papers, so there may well be sources, but that doesn’t make them indisputable facts. There’s a lot of stuff which we know is very speculative and hasn’t been reproduced. It’s great for an overview from a patient. I’m...

On control of the body and overriding it two things come to mind Firstly.. Do you choose when your heart beats? No, you can indirectly influence but there is no ‘I’ that controls it. Can you stop yourself breathing? Or control how fast? There’s a mix but limits on your control. We certainly...

Audio version of the paper available at this link. There’s a few bits that sound a bit off but I found it very listenable and it’s how I digested the paper. I hope others find it useful (any comments probably best in this thread to not distract from the science here) It may be a bit difficult...