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  1. hotblack

    UK House of Lords/ House of Commons - relevant people and questions

    Not sure if this is the right thread but apparently the wider NHS 10 Year Plan is now scheduled for July, see this Times article. Whether this will impact the DHSC ME/CFS Delivery Plan I do not know, they’re not formally linked but it could make sense for them to come together.
  2. hotblack

    UK House of Lords/ House of Commons - relevant people and questions

    I’m not sure if it’s the new forum software or how it was copied and pasted with formatting included, but FYI @Tao Fogger the last post is unreadable in dark mode (the text remains dark as well as the background). It’s fine in light mode but quite a few people browse using dark mode. Previous...
  3. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    That reputable clinicians disagree on what inflammation is. Or as @Eddie says what various things mean. I do think it’s understandable that some are responding in the way they are, we saw some of these concerns here, there have been studies that show ‘things’. But I also think it misses the...
  4. hotblack

    Coping with heat

    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…
  5. hotblack

    Coping with heat

    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...
  6. hotblack

    Coping with heat

    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.
  7. hotblack

    United Kingdom: Action for ME (AfME) news

    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.
  8. hotblack

    Are people with ME/CFS immunocompromised?

    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...
  9. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    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...
  10. hotblack

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    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...
  11. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    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.
  12. hotblack

    Could pacing be the "banana diet" of me/cfs? A prompt for a discussion

    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...
  13. hotblack

    Could pacing be the "banana diet" of me/cfs? A prompt for a discussion

    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...
  14. hotblack

    The Implications and Predictability of Sleep Reversal for People with [ME/CFS]: A Machine Learning Approach, 2025, Dietrich, Jason et al

    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...
  15. hotblack

    2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

    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...
  16. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    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...
  17. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    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 ;)
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