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  1. hotblack

    Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid

    I know it’ll be a while but I’m certainly looking forward to when they’re able to talk more about this and their process. Grounded speculation is always interesting!
  2. hotblack

    Do you feel worse, better or the same when you wake compared to when you went to sleep?

    Depends. Today worse, but that’s because I did too much me tal activitt yesterday so am paying the price. Sometimes better though. Overall sleep is ‘good’ for me but if the sleep or my body is ‘bad’ then I will feel worse. And as in another thread sometimes sleep can leave me groggy or tired...
  3. hotblack

    Artificial intelligence autonomously completes prescription refills in Utah

    I expect it’s more a profit assessment than risk… They claim good performance. And if these results are confirmed (there has been no peer review) then performance does look good. And prescription renewals is one thing but this seems like a test and the goal is much wider adoption of the...
  4. hotblack

    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    The shenanigans makes me less and less confident of the results they’re trying to make people confident of with their shenanigans…
  5. hotblack

    United Kingdom: ME Association news

    I don’t disagree. More that my motivation in saying they have good intentions is that they really think they are doing something which will help people. I think they are wrong in this and many here would agree. But differences in opinion are not something it is easy to arbitrate. Even if we have...
  6. hotblack

    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    Oh yeah “Example of a recording on an NK cell from HC” and “Example of a recording on an NK cell from a person diagnosed with ME/CFS”… that does rather spoil things. Figure 2 seems to aggregate results
  7. hotblack

    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    I’m obviously in no position to comment on validity of any of this. But if it is, this seems like it would be interesting particular in the context of other studies which have shown possible calcium and ion channel involvement (including the precision life analysis). A few other questions it...
  8. hotblack

    United Kingdom: ME Association news

    I’ve not managed to read it all but looking through the annual report there is some good stuff in there. It flags many of the problems we face. It has data on dissatisfaction and does raise the particular issues of severely affected patients. What I’m slightly confused about is the...
  9. hotblack

    United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

    I agree @Amw66 How BACME’s approach shapes perception amongst medical professionals and the wider public which enables minimisation of severity is an important point. I’ve yet to come across anyone in the NHS who takes severe ME/CFS seriously, at all. And too many non medics think it’s just a...
  10. hotblack

    Artificial intelligence autonomously completes prescription refills in Utah

    Relevant paper from the company Toward the Autonomous AI Doctor: Quantitative Benchmarking of an Autonomous Agentic AI Versus Board-Certified Clinicians in a Real World Setting Abstract Background Globally we face a projected shortage of 11 million healthcare practitioners by 2030, and...
  11. hotblack

    Artificial intelligence autonomously completes prescription refills in Utah

    https://www.politico.com/news/2026/01/06/artificial-intelligence-prescribing-medications-utah-00709122 I’m generally more positive on use cases for AI/ML than some on these forums but this seems like a very bad use case for LLMs with significant questions on accountability. The current approach...
  12. hotblack

    United Kingdom: ME Association news

    A couple of updates from the MEA This mentioned in the relevant thread https://meassociation.org.uk/2026/01/new-kent-and-medway-me-cfs-and-long-covid-specialist-referral-service/ And more details on the ‘Healthcare 4 ME’ team and the pilot they have been running here...
  13. hotblack

    Tender: NHS Kent and Medway Integrated Care Board Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid service

    Well, this is interesting https://meassociation.org.uk/2026/01/new-kent-and-medway-me-cfs-and-long-covid-specialist-referral-service/
  14. hotblack

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

    I’d encourage people who feel they can to try to build up a relationship with their MP or someone in their MPs office. Send them letters, let them know about the issues, share your experiences. It takes time, it takes a lot of effort that could be spent on other things, so is hard for people...
  15. hotblack

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

    From speaking with @kacheston I’m confident that this cookie expiration issue is the problem I hit here and I thank her for her help. Understanding this is complex and not well documented but this site has good information This is most likely to hit Safari or Brave users completing the...
  16. hotblack

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

    It certainly feels like there are more mentions, which seems good for awareness. How much understanding there is behind that and how much impact it will have we can’t be sure of course. But it feels positive to me. This is how politics and lobbying works. I tried to look for data on Hansard...
  17. hotblack

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

    After a bit more digging I think this is the reason https://www.cookiestatus.com/safari/
  18. hotblack

    Solve M.E. What's New in ME/CFS? Interview with Dr. Chris Ponting

    Only just listened to this but glad I did and hope others do, within but most importantly outside the ME/CFS world. Chris is such a great communicator, I love hearing him speak. Well put together by SolveME too, nice, short, focused messages.
  19. hotblack

    Tender: NHS Kent and Medway Integrated Care Board Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid service

    Given the contract notice is out, already has terms specified and this seems to have a closing date of 5 February 2026 I expect not. Sorry to sound negative on this but it doesn’t look to me as if they are seeking patient participation in defining what is needed here. Happy to be corrected if...
  20. hotblack

    Tender: NHS Kent and Medway Integrated Care Board Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid service

    Well it’s full of buzzwords. I’d love to know what “treatment, rehabilitation and recovery support” they have evidence for. Enough to attract those wishing to expand their little rehabilitation empires but not enough to provide the support needed for people affected across an ICB which covers...
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