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  1. hotblack

    Trial Report Effect of normobaric and hyperbaric hyperoxia treatment on symptoms and cognitive capacities in Long COVID patients: [placebo RCT], 2025, D’hoore+

    Do they sell services privately or are they focused on military personal? I’m not sure how it works in Belgium. But possibly because they’re a military hospital is why they care about rigour and results, that is they’re focused on finding effective treatments for personal.
  2. hotblack

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Wrapping rehab in an app feels awfully like a rehash of the past. I haven’t been through this whole thread sorry, but thanks to those who’ve been digging into this. This approach may well be useful for some people who need this sort of support to recover from illnesses. How it helps change...
  3. hotblack

    Push to change ‘misogynistic’ name of one of the world’s most common surgeries

    For me the question is, what would have more impact, changing the name or changing how people are seen and treated? Not that these things are a choice between those two, but sometimes I do wonder about where limited effort/resource/influence is expended and if failure to be able to change one...
  4. hotblack

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    So presumably we could find something like some people either having a different issue, or some low affinity antibodies which in behave a bit differently in some people with ME/CFS? This could be, in some people, downstream effects of what is really going on?
  5. hotblack

    BBC: "At-home cervical screening tests offered in England" (implications for PwME)

    Good news. There’s so much that could be made more accessible. Which would work for people with many different conditions, and just convenience for others. And could even be cheaper to deliver! (I heard on a programme a little while back this is why there’s been an increase in at home things in...
  6. hotblack

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Same, I had that exact pair then upgraded to the newer X series and they’re great, I now have X3A from a few years ago and X5A just bought https://www.3m.co.uk/3M/en_GB/p/d/b00037373/ https://www.3m.co.uk/3M/en_GB/p/d/b00037368/ I also tried some Bose noise cancelling headphones last week...
  7. hotblack

    Webinar: Understanding ME: Investigating cellular and body-wide features of ME, Dr Daniel Missailidis, PhD

    Lovely to hear @DMissa and I really enjoyed the talk. One of a number of great communicators and caring researchers we’re lucky to have. Looking forward to what comes out of the current project particularly in conjunction with all the other studies (obviously especially DecodeME). Pulling...
  8. hotblack

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

    Should we consider the audience that isn’t deep into this? I wonder what someone unversed in all the history would make of this and if they’d grasp the point about things having been found but there being no reliable evidence for causal mechanisms? I suppose it depends on the target audience and...
  9. hotblack

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

    Looks great in dark and light modes. Thanks @Tao Fogger glad you got to the bottom of the issue.
  10. hotblack

    Urinary creatine

    Given I had a serious kidney infection around onset or at least that was involved in my significant worsening I had repeated urine tests then and in the time after (along with the usual blood tests). There were nothing flagged. At least some of these, if not all, would have been when I was at or...
  11. hotblack

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

    Oh I agree. And may have explained poorly. I was thinking maybe if your wider framework is changing, why would you announce changes for a particular disease before announcing that wider framework? One needs to fit within the other, so they’d logically come together or with the framework first...
  12. hotblack

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

    To be clear, that’s not what I was implying at all. I understand and accept people’s cynicism, but I simply meant announcing a plan for changes to how care is delivered for a condition make sense to come in conjunction with an announcement about wider changes to how all care is delivered.
  13. 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.
  14. 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...
  15. 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...
  16. 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…
  17. 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...
  18. 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.
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