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  1. hotblack

    Long Covid drug BC-007 research news

    The problem is then that probably becomes a disincentive for private companies to run trials. Or at least they will say it is and/or threaten to run trials elsewhere and so governments won’t push for it. I don't think there’s a reliable way of forcing companies to do this. Other than taxing...
  2. hotblack

    Sequence modeling and design from molecular to genome scale with Evo, 2024, Nguyen et al.

    Really interesting. I remember Demis Hassabis talking about how AI/ML is well suited to problems with large search spaces (AlphaGo, AlphaFold) and how the he hopes it could be the language of biology in a similar way maths has been for physics. AlphaFold seems to be finding uses as part of...
  3. hotblack

    Long Covid drug BC-007 research news

    It seems a shame people are criticising the primary outcome measure and study design after the fact. But I guess some people had invested their hopes in this? That would be interesting. Publication would really help, in terms of potential for understanding mechanisms but also to help those...
  4. hotblack

    UK: Healthsense, formerly called Healthwatch

    That’s good to hear. Thanks for the context. Much as propagation/repetition of misinformation about ME/CFS obviously annoys me (especially when used as an argument against one of the few people taking it seriously) I’d much rather have people who are open to listening than those who aren’t.
  5. hotblack

    Integrated Weighted Gene Co-expression Network Analysis with an Application to CFS, 2008, Presson et al

    There’s the common question for older papers about definition. The various links to supplementary info and software also no longer work. There’s a lot I don’t understand but how they went about things sounds a little forced rather than following the data to me. Interesting to think about in the...
  6. hotblack

    Integrated Weighted Gene Co-expression Network Analysis with an Application to CFS, 2008, Presson et al

    Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZcC5V5ZNQbucByN0PkjyK7CM1EuuQlhPj9k So as to not derail discussions of the papers please post any feedback on these audio summaries to this thread...
  7. hotblack

    Combinations of single nucleotide polymorphisms in neuroendocrine effector and receptor genes predict chronic fatigue syndrome, 2006, Goertzel et al

    The full paper seems to be available on researchgate Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZvC5V5ZLtBWzHARrObg2BgsAdEL0poMspB7 So as to not derail discussions of the papers please post any feedback on these audio summaries to this thread...
  8. hotblack

    Using LinkedIn for advocacy campaigns

    I did have but haven’t gone near it for many years. It always felt very work/recruitment focused and not somewhere I’d really want to get involved in or have welcomed advocacy myself. As you say things may well be changing though.
  9. hotblack

    The Nobel Prize in Physiology or Medicine 2024

    I’ve been catching up with Science in Action episodes. There’s some really interesting discussions on the Nobel prizes with various scientists in this one. Including with Victor Ambros and his wife and lab partner Rosalind “Candy” Lee (who notably isn’t mentioned in the nobel prize press...
  10. hotblack

    Preprint Prevalence of CFS and its related factors in covid- 19 patients discharged from at northwest of Iran hospitals in 2022, 2024, Arman Alizadeh et al

    It’s not all bad… More seriously, it does seem very muddled on what the conditions it’s trying to discuss are. I appreciated your commentary though @Hutan
  11. hotblack

    UK: Healthsense, formerly called Healthwatch

    Also while we may not know how to ameliorate it, we very much now how to make it worse. And they insist on not listening when we tell them that.
  12. hotblack

    UK: Healthsense, formerly called Healthwatch

    Wow. Or it could be the case that (as for me) the trigger or exacerbating event would have killed me in previous eras. Or indeed in countries with less developed healthcare systems. Or that we weren’t looking before. Or we bundled people into another category. There are many diseases we see...
  13. hotblack

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Interesting that there are people talking of a variable response. Not something those of us who don’t drink can attest to but I guess it’s possible we’d see the same. The talk of experiments ‘for science’ becomes more appealing! I’m interested in how vascular nerves could fit in and wonder...
  14. hotblack

    Reductions in cervical cancer rates relating to HPV vaccine uptake worldwide

    I’ve heard a few stories about the impact of HPV vaccination on cervical cancer rates in the UK and elsewhere recently but this has some of the best graphs and charts to visualise it all worldwide https://ourworldindata.org/hpv-vaccination-world-can-eliminate-cervical-cancer
  15. hotblack

    C-reactive protein, CRP

    Throughout testing early on in my illness and in some routine more recently all < 1 mg/L. Even when being really rather quite ill.
  16. hotblack

    Poll: To what extent are you (PwME) still shielding from Covid?

    I wasn’t sure what the best was so went for mask and home and avoid contact. I’m housebound, don’t mask with those I live with, but do on the rare occasion I have a visitor for some other reason. Usually medical professionals and they used to mask but now don’t routinely so it’s one of the other...
  17. hotblack

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    One example that I found interesting was zopiclone. Used it occasionally years ago and found it worked well. Then had no need for many years. Since ME tried it again and had all sorts of problems, notably a significant rebound effect. Given how it works I have often wondered how this fits in...
  18. hotblack

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    I like this idea of a “hypothalamus mediated 'negative' signal” and “that human beings normally have two opposing hypothalamic responses to alcohol”. Partially because so much in our bodies seems to be a constantly changing precariously managed balance between different, often opposing factors...
  19. hotblack

    Preprint Guardian angels off duty? ME/CFS is Sustained by an Impaired Stress Response in the Central Nervous System, 2024, Renz-Polster

    Has anyone ever proposed in a paper that the body’s stress response is completely normal for whatever is going on elsewhere in the body? It seems a lot rarer than the other way around. I sometimes wonder why there is this preference to perhaps put the cart before the horse…
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