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  1. hotblack

    New podcast on medical innovation - Hard Drugs

    More episodes… The art of protein design with AI What if you could design a protein never seen in nature An interesting discussion and also some great kinks in the podcast info including this course on using AlphaFold from EMBL's European Bioinformatics Institute...
  2. hotblack

    Review The proteasome: A key modulator of nervous system function, brain aging, and neurodegenerative disease, 2023, Davidson et al

    Not evidence but more of my hand waiving learning and thinking. But thought others may be interested. I came across things while thinking about and reading up on areas around the proteasome, ubiquitin and general maintenance and cleanup, with a mind on synapses and mtDNA. A bit focused on...
  3. hotblack

    Review The proteasome: A key modulator of nervous system function, brain aging, and neurodegenerative disease, 2023, Davidson et al

    The proteasome: A key modulator of nervous system function, brain aging, and neurodegenerative disease Davidson, K., & Pickering, A. M. Abstract The proteasome is a large multi-subunit protease responsible for the degradation and removal of oxidized, misfolded, and polyubiquitinated proteins...
  4. hotblack

    News from PrecisionLife Ltd.

    In some ways I’m similar and I think we’d all like to find a single root cause and something which can just fix us all. Maybe we will, maybe it will be quick and something off the shelf works. But maybe it will be a new target requiring new treatments to be developed. So if we can find things...
  5. hotblack

    News from PrecisionLife Ltd.

    I’ve skipped some of the discussion to focus on the bit people probably care about most, DecodeME data. they have the data from 11,500 patients (smaller than full set as not everyone consented and there were some data QC issues) They have 4 main datasets, UKB, UK Sano Gold LC, NIH All Of Us and...
  6. hotblack

    News from PrecisionLife Ltd.

    This is a long (over 1h) interview and I was a bit put off by Cort’s style to start but it’s actually one of the more interesting interviews I’ve heard from PrecisionLife. Which makes me hopeful for how they present and communicate any findings in their upcoming paper Points that stood out to...
  7. hotblack

    News from PrecisionLife Ltd.

    I’m making some notes while listening (it’s long, over an hour) which I’ll share later but for now here’s a link to the audio of the interview Cort did with Steve https://u.pcloud.link/publink/show?code=XZnqA95ZmCdrSgozKB8OEDpE0JW960chXMuk
  8. hotblack

    News from PrecisionLife Ltd.

    The joys of ME/CFS! :hug:
  9. hotblack

    News from PrecisionLife Ltd.

    I’m most interested in this, presumably this refers to their analysis of DecodeME data? And hope we get more clarity from PrecisionLife than we’ve had in some previous papers
  10. hotblack

    How quickly could an effective drug treatment for ME/CFS be rolled out once approved?

    Agree. It’s a useful framing for thinking and discussing. And tbh even if the effectiveness of a treatment was less dramatic if it was backed by evidence it would still be handled similarly. Look at the countless medications prescribed for management of other conditions.
  11. hotblack

    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    I disagree. If there was a clear cut treatment the resistance to it wouldn’t stand a chance in the face of the evidence and the vast majority of healthcare practitioners would forget any misgivings they previously had. Most people in the NHS don’t wilfully want people to be ill or to suffer...
  12. hotblack

    How quickly could an effective drug treatment for ME/CFS be rolled out once approved?

    A few links which may be useful in helping understand some of the structures and responsibilities within the NHS. It’s obviously a topic with a lot of history and politics. But if we can try to avoid that and focus on understanding how things work and who we will need to persuade, convince or...
  13. hotblack

    How quickly could an effective drug treatment for ME/CFS be rolled out once approved?

    Not necessarily so. If there is clear evidence then it would be a simple job for NICE. A lot pf the decisions we see protests about are because, to be blunt, the evidence is not clear. There are treatments which drug companies charge vast sums for but have negligible advantages over cheaper...
  14. hotblack

    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    I’m not sure the mechanisms exist to do that though. Or that medics would respond well to attempts to do such things. There may be advice from NHS England and if there is strong evidence this may be supported by guidance from NICE… But it relies upon different people in different places making...
  15. hotblack

    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    It would depend entirely upon the GP. Or local integrated care boards. What NICE advises, if people follow that advice and what services the boards think they need and if they commission them… (Sorry I’m probably half answering your other post but they seem very linked in terms of NHS structures)
  16. hotblack

    How quickly could an effective drug treatment for ME/CFS be rolled out once approved?

    What would happen? Meetings How would it be rolled out? Unevenly I don’t mean that as a pessimistic view but that is usually how things go, even in the best cases. The covid vaccine example you gave shows what is possible, but it involves bypassing a lot of things so is unlikely to happen. And...
  17. hotblack

    Supplements containing as much as 12.5 times the recommended safe upper limit of popular vitamins and minerals sold on online marketplaces, Which?

    The lesson seems to be, don’t buy anything like this from any online marketplaces. Regulations in the UK and EU are generally quite good for medicines, food, etc. but we seem to let some companies ignore them.
  18. hotblack

    Hamilton robotics grant

    Generous offer by the company and by you @ChronicallyOverIt thank you! Would love to see someone who can make use of this take you both up on it.
  19. hotblack

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    Great work and thanks again @Joan Crawford Good luck for the ride this weekend. Could be a bit of wind around, hopefully enough and in the right direction to give you a helping hand rather than cause any trouble.
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