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  1. hotblack

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I have zero information on this but I would be 99% sure it’s government/institutional. Most UK research linked to universities is I think government, national academies/institutes, european commission, etc. There’s sometimes charities involved too but individual donations seems much more a US...
  2. hotblack

    Article Scientific Discovery: Five medical breakthroughs in 2024 - an overview, Dattani

    I found this an interesting article from a science writer for Our World in Data. Rather than the usual hype it focuses on five treatments which showed high degrees of efficacy in phase 3 trials published in 2024, so are being or close to being used and having a real impact. There’s also audio...
  3. hotblack

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I’m only recently teaching myself this stuff, biology also wasn’t my thing educationally so I may not be right but… This paper is I think more looking at two different analysis techniques (GWAS and rare variant/loss of function burden tests) than partial or full genome sequencing. You can do...
  4. hotblack

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    This isn’t something I’m an expert on, but with a £7 million cost I expect the target will be institutional/government funding. And while there may be a mix of funding sources, anything attempting to combine those with commercial services would I agree get very difficult in terms of ethical and...
  5. hotblack

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    This looks really interesting. So good to see Chris, Sonya and others working together on the next steps after DecodeME. I’m sure the trials and application processes have taken a lot of time and effort. And thanks to @Chris Ponting for the links to the paper and info on other uses of the...
  6. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    Read this email earlier, all really good stuff to hear. The numbers involved, the DNA data having been processed, extra questionnaires. The work involved must have been massive. Thanks to all involved. Now the hopefully fun bit for the science team!
  7. hotblack

    Is PEM related to exerkines?

    I can get a delayed PEM response from sitting at a sink and washing my face. Or raising my hands and using clippers to cut my hair (even if lying down). Or having a conversation. Or… you get the idea. Sometimes there’s immediate effects too. Sometimes not. But none of these are ‘exercise’ and...
  8. hotblack

    Is PEM related to exerkines?

    Absolutely agree @Kitty I’ve been reading (listening to) the paper some more and made some notes… On the one hand I’m not sure this can be related to PEM because of their definition of exercise and exerkines. I can get PEM from minimal activity which certainly does not meet their definition...
  9. hotblack

    Is PEM related to exerkines?

    I suppose you could say it’s caused by exertion more than exercise? But even that isn’t telling the whole story and it’s certainly not a 1-1 relationship. But there could be something whereby some of the things produced by activity are sometimes involved in something going awry. From the...
  10. 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...
  11. 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...
  12. 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...
  13. 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.
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