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  1. hotblack

    UK Action for ME Big Survey 2025 - closes 27/1/26 (UK residents only)

    Also a little advice to people who intend to use the free text fields to write their responses down somewhere else. I was working my way through over a number of weeks and all was fine then I lost my progress. No idea why, @kacheston has kindly enquired with qualtrics support, but I think...
  2. hotblack

    Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

    I share the concerns on how valid any of this is but also, credit to @Siebe for the work and trying something
  3. hotblack

    Preprint Identification of Novel Reproducible Combinatorial Genetic Risk Factors for [ME] in [DecodeME Cohort] and Commonalities with [LC], 2025, Sardell+

    I think the implication is every gene plays a part, as there are about 20,000 protein coding genes in the human genome.
  4. hotblack

    Norepinephrine-mediated slow vasomotion drives glymphatic clearance during sleep, 2025, Natalie L Hauglund et al

    Never zolpidem but I was prescribed zopiclone. Some years pre ME/CFS I was prescribed it and used it to great effect intermittently for a short period and slept very well and restfully each time. Post ME/CFS the effects were wildly different, with some help getting to sleep and then massive and...
  5. hotblack

    Preprint Identification of Novel Reproducible Combinatorial Genetic Risk Factors for [ME] in [DecodeME Cohort] and Commonalities with [LC], 2025, Sardell+

    Thanks, nice way of looking at it. I suppose that could strengthen confidence in their own replication attempts and crossovers with Long Covid in this and other studies (using All of Us and Sano GOLD data as well as UKB and DecodeME).
  6. hotblack

    Preprint Identification of Novel Reproducible Combinatorial Genetic Risk Factors for [ME] in [DecodeME Cohort] and Commonalities with [LC], 2025, Sardell+

    Do you think it would be fair to say that both analyses are pointing to the same broad genetic loci then @forestglip ? Maybe that’s what they’re getting at in the article? But it seems to be same data, different methods, same loci rather than replication.
  7. hotblack

    Preprint Identification of Novel Reproducible Combinatorial Genetic Risk Factors for [ME] in [DecodeME Cohort] and Commonalities with [LC], 2025, Sardell+

    A couple of the same specific genes showed up in both. But that’s not surprising and not replication I don’t think. And it really depends what they mean by regions in the article. After looking at it more my feeling/understanding is that PrecisionLife’s results support the findings of DecodeME...
  8. hotblack

    Article: Could this palm scan read your body better than a blood test?

    A quick look at the sort of youtube/tiktok channels promoting it and clinics selling it, sounds like expensive woo
  9. hotblack

    Keeping clean when severe - a thread for tips

    Yes! A great tip. Thanks for both @Kitty I use clippers (well, get someone else to) for a proper short neater job, but at times have also used this approach. Bunch my hair up in various places (more than just two) and hold with hair-ties or just elastic bands, then get someone to snip the hair...
  10. hotblack

    Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Huhmar/Bragée/Polo

    Wouldn’t that potentially tie in with the idea of generalised sensory mishaps? I’m partially thinking of ORs again here as I was reading up on their functionality and cAMP being involved but presumably it could happen in different places? I guess these are quite, generalised systems, but maybe...
  11. hotblack

    Treatment for ME has turned a corner - the UK must not leave patients waiting, 2025, Chowdhury

    To be fair I suppose the subheading does say “Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury”. It’s pretty clear to anyone reading this. It’s not a great headline, but how many headlines these days reflect the story? What Sonya has said is...
  12. hotblack

    Feeling worse from oversleeping—poll

    I wonder about that. Because I’d probably answer no, because sleep does help me. Not sleeping really causes me problems. I would even say I would rather sleep too much than too little. But there’s a goldilocks zone and I also wonder if it’s particularly linked to being awake or asleep at...
  13. hotblack

    Feeling worse from oversleeping—poll

    I’m not sure I can answer this very well. I can feel ‘worse’ or more groggy and slow after sleeping some more, but did when well too and also know this happens with others without ME/CFS as @EndME mentions. There’s also the usual ‘it depends’ uncertainty. But also my initial answer would just...
  14. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Here’s the report, as with the PrecisonLife analysis please take with a pinch of salt, but there may be something interesting for people here. I’m having more difficulty getting my head around this than PrecisionLife and am not sure if mine is the right approach here, although there may be some...
  15. hotblack

    Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Huhmar/Bragée/Polo

    For me, at least these days, I’m always very inactive, but the periods of peeing loads correlate with crashes. Edit: It could be interesting to have some longitudinal studies of some of these hormones, tracked with activity, crashes, etc.
  16. hotblack

    Keeping clean when severe - a thread for tips

    Yeah, cut it short, wipe my head with a wet flannel, that’s about it. I did used to get my mum to wash it. I’d lie with my head over the edge of the bed, face down, with a basin below me and she’d use a jug to pour water over my head, shampoo and rinse. But that’s too much hassle for either or...
  17. hotblack

    Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Huhmar/Bragée/Polo

    It may be wildly off but the experiences of drinking/peeing/etc that many of us talk about is one of the things that made me interested in the idea of involvement of chemoreceptors in the kidneys
  18. hotblack

    Supporting people with myalgic encephalomyelitis in primary care, 2025, Chowdhury

    Would be nice if more of us could read it but if it’s reasonably sensible and is in the right place to get to the people who need to hear it then I guess that’s a good thing.
  19. hotblack

    Keeping clean when severe - a thread for tips

    Saline solution (salt water basically) has a lot of uses, it’s great stuff. Gargling or rinsing your mouth with salt water is often recommended by dentists after treatment. If you need a cut cleaned up it will often be done with saline wipes. There’s a good overview here of the medical uses...
  20. hotblack

    Keeping clean when severe - a thread for tips

    Thanks @Evergreen and that description of @wabi-sabi is interesting. There was some talk of the multiple sensory stimulation aspect of things like showering in another thread (sound, heat, touch, balance, visual movement, etc)
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