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  1. hotblack

    Shared autonomic phenotype of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2026, Novak, Systrom+

    Have they identified a commonality between LC and ME/CFS or a commonality between ill people, or as @Jonathan Edwards says a commonality between the patients that end up in their clinic? I’d also like to understand more about these tests and their ability to distinguish between different...
  2. hotblack

    Suvera - UK "online clinic" through my GP

    Good luck @ukxmrv hope you can get some answers
  3. hotblack

    There aren’t any answers, we are looking for them and will support you until we find them

    Thinking about various topics discussed recently, this sentence seems to encapsulate a lot of the problems we see and also leads to solutions needed There aren’t any answers People get caught up in a lot of things because either They have been abandoned by the medical profession so seek their...
  4. hotblack

    Demarcation between science and pseudoscience: Still a Problem?

    No, because nobody agrees on all usage and interpretation of language. It’s always a rough approximation and then debate happens if people want to. I would add that IMHO there is a difference between intellectual/academic argument on the philosophy of science and what is useful for most forum...
  5. hotblack

    Demarcation between science and pseudoscience: Still a Problem?

    There is a good discussion to be had on the philosophy of science I am sure. I remember my mum studying Popper and co, there’s a copy of What is this thing called science? over on a bookshelf. It’s all very interesting but also probably very academic and often inaccessible unless you have a...
  6. hotblack

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I agree with a lot of what’s been said and the main message. But I also think it’s worth considering that so many of us had the same reaction to some posts and how this has been talked about at times. Putting that back on people as them misunderstanding is I think a mistake and missing an...
  7. hotblack

    Do you have any ideas for topics for PRIME seminars?

    Perhaps having the aims of PRIME as a primer (sorry) would have been useful reminder for this thread and context for the question? Thanks for posting them @Trish I think the suggestions here about questionnaires were specifically about those used in scientific studies rather than those used by...
  8. hotblack

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

    Alarm bells sounding… that and the talk of there being alternative appropriate pathways… Imagine if they gave that answer for other conditions with similar impact on people as Long Covid and ME/CFS.
  9. hotblack

    Do you have any ideas for topics for PRIME seminars?

    I like the point @Utsikt made on negative findings and the suggestion @Yann04 makes on questionnaires is great given how much they’re used and misused. Perhaps they could both be covered by a session on best practices or lessons learnt for ME/CFS research. There’s a lot we’ve learnt on what not...
  10. hotblack

    Do you have any ideas for topics for PRIME seminars?

    To me the pain thing seems to tie in with how our body senses other things, heat, noise, light, tiredness, internal changes of all sorts… Genes of interest, from the DecodeME candidates it’s probably these which are all seem to show similar relative expression in the brain and are involved in...
  11. hotblack

    Why Chronic Illness Patients Feel Safer Talking to AI Than to Doctors

    In some ways yes I think there is more risk than previous tools because we've never had any tools before that we can speak to. None we can speak to in the way we are used to speaking to other humans, that's been a unique characteristic and no longer is. Regardless of other capability that is a...
  12. hotblack

    Do you have any ideas for topics for PRIME seminars?

    Agree it’s great to be seeking ideas. And also that it’s a tricky one, there are so many potential questions! Maybe we need some scope to narrow things down?A few potential things that immediately spring to mind How we can involve more patients who are severely affected in research? What will...
  13. hotblack

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

    Just listening to this and yeah I agree. I thought it was a good piece, interview and framing. The comparison to other conditions with lots of different symptoms like Lupus was a useful one I think. Pleased to hear this on a programme like Inside Science. Well worth a listen, the previous link...
  14. hotblack

    Why Chronic Illness Patients Feel Safer Talking to AI Than to Doctors

    My concern is, no matter how good or accurate AI based systems get, there is no accountability or responsibility. And I find it very hard to believe they will get close to the ability to handle nuance and complex interpersonal situations. The problem here is less how ‘good’ the AI system is and...
  15. hotblack

    Suvera - UK "online clinic" through my GP

    Sounds like something you’d need to speak to your GP practice about rather than the company itself if you have questions or concerns. They are the ones who will have initiated and contracted this out and are responsible for it.
  16. hotblack

    mRNA skin cancer vaccine shows protection at 5-year follow-up, Moderna and Merck say

    I’ll have more of a dig to find any relevant papers rather than just articles and press releases and update this post or thread. But it looks like another positive for mRNA vaccines.
  17. hotblack

    mRNA skin cancer vaccine shows protection at 5-year follow-up, Moderna and Merck say

    Full article at Arstechnica
  18. hotblack

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

    Not something I have direct experience of but I think just reading the posts from any number of academics on (social network of your choice) with similar experiences gives a pretty good indication of people’s faith in the system,
  19. 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...
  20. 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)
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