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  1. hotblack

    Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

    I’ve not got through the full paper yet, hoping the html version will be available soon and work with text to speech, but from what I’ve read I did want to add a comment. Firstly thanks to @Mark Vink for getting involved with the discussion, it’s always great to see authors here. For obvious...
  2. hotblack

    A compendium of human gene functions derived from evolutionary modelling, 2025, Feuermann et al

    I came across this tool, the PAN-GO Functionome from the Gene Ontology Consortium, which may be if interest to people exploring gene functionality. It doesn’t seem to be one of the libraries available in Enrichr (although that does have their older Panther data)
  3. hotblack

    A compendium of human gene functions derived from evolutionary modelling, 2025, Feuermann et al

    A compendium of human gene functions derived from evolutionary modelling Abstract A comprehensive, computable representation of the functional repertoire of all macromolecules encoded within the human genome is a foundational resource for biology and biomedical research. The Gene Ontology...
  4. hotblack

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Understood, and I’m sure we all appreciate the effort and intent. I’m just asking for you to provide the sources for the claims made, especially about specific rules and procedures mentioned. I use Gemini myself and if there are sources it will have provided links. Or you can search on the sites...
  5. hotblack

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    I’d be very careful about reading too much into this from an LLM generated conversation which may not be accurate. If you have primary sources which support this can I suggest posting them @Cinders66 ? Gemini often gives source links and the UK Parliament and House of Commons Libraries are great...
  6. hotblack

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Agree. People with ME/CFS need time to write to their MPs and MPs need time to get events in their diaries. Asking people a few days before an event is a complete waste of everyone’s time. “The Annual General Meeting of the APPG will be held on Wednesday 21st January — it's so important we get...
  7. hotblack

    Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

    Yeah. And tbh, trialing this stuff, with unknown consequences, maybe starting with severe isn’t the best. F&M aren’t in a position to provide ongoing support for any negative impacts, Being ready for as soon as we have better evidence definitely.
  8. hotblack

    Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

    Yeah, I’m not as bad as @Yann04 on the sensory side most of the time. But they put it very well. I can speak and be spoken to for short periods. And use audio as I find it easier than reading (which is impossible in long form). But I have a managed family/home environment and visitors who don’t...
  9. hotblack

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

    It really didn’t, it’s okay, And I may not be right! It’s just a point of view and a shared frustration of things not happening and some rubbish lobbying from MPs. And probably my own fears of the NHS! All good and please continue to argue for what you believe :)
  10. hotblack

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

    Sure, you know how much I want it, have been lobbying for it and have encouraged others here to do the same. I agree research is what will ultimately bring wider change most effectively. But it will take time. I’m just being realistic about how I see people’s reactions and the limited resources...
  11. hotblack

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

    We’d all love that to happen, but tbh we know it will just result in the same answer saying it is the responsibility of the funding body… It would be great for people to write letters to their representatives on this but I’m not sure questions in the house will have the biggest impact. Focusing...
  12. hotblack

    Severe people may hold answers to Long COVID. They must be included in research. (The Sick Times)

    From what I remember reading everyone attended their clinic, may be wrong here. But how studies are performed and eventually treatments delivered to those unable to leave their beds/homes without significant negative impact has often been discussed
  13. hotblack

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    I like the idea of microglia and or astrocytes being involved here :) They seem quite lipid sensitive like B cells too? Thanks. Understood. Fairly sure I’m on about a theory a week this last year! I’m not in a position to test anything though so will continue to hand waive and throw ideas...
  14. hotblack

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    Usually I guess. But could this all happen, within B cells themselves? Sorry I’m crossing threads as well as streams of thought a bit here.. But if B cells are in his lipid altered state, could that push pathways like TLR, NLRP3, cGAS–STING within them closer to thresholds for...
  15. hotblack

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    When I was digging around this before I wondered about something not being as efficient around cleanup meaning the response goes on for longer and potentially amplifies more than normal. Ubiquitin proteasome area. Not sure we’ve really got any evidence for this though. But I still like your...
  16. hotblack

    Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand Disability (FAIR)

    Interesting, thanks @Kitty Maybe that is more the case in some areas than others? Maybe it was partially age, being a younger otherwise fit and healthy looking person? Maybe it was my own pride and prejudice showing! It certainly felt like I got a lot of looks. Maybe they weren’t judging but...
  17. hotblack

    The Prevalence and Characteristics of Difficult Patient Encounters: A Systematic Review and Meta-analysis, 2025, Jackson et al

    Thanks @ScoutB I wonder how much is the entire training and system of healthcare is about delivering treatments. There’s possibly less about what is a significant part of it which is not being able to. There is a wider human nature aspect of saying ‘I don’t know’ being hard for many/all of...
  18. hotblack

    Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand Disability (FAIR)

    Was definitely something I was self conscious of when first ill and less severe, and I would probably have benefited from using a chair more often. Even now, being severe and v rarely getting the opportunity, the fact I can when at my best briefly stand and can move my legs or walk a few steps...
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