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  1. hotblack

    DecodeME in the media

    The interview @dave30th did with @Chris Ponting is brilliant. I extracted the audio which may make it easier for some to listen to and am sharing it with his kind permission here https://u.pcloud.link/publink/show?code=XZt1PW5ZGwuyWDNiwCVn7FAF4HpyDyRlpwE7 The interview really gives a great...
  2. hotblack

    DecodeME in the media

    I remember being sent to hospital by one dr only to be sent away after an awful overnight ‘stay’ because ‘there was nothing wrong with me’ as the senior dr there said in their assessment ‘maybe you had a migraine’. Despite the fact I had to be taken there in an ambulance and couldn’t walk out of...
  3. hotblack

    Genetics: CCPG1

    Hopefully our novelty now gets people (including some neuroscientists) involved! It was also a bit more than just activity I was thinking. A lot of our symptoms do seem to be about normal signals, some have described them as over-reactivity or oversensitivity or other similar words. But what if...
  4. hotblack

    Genetics: CCPG1

    Interesting thanks for the insight @jnmaciuch What do you think about it being more or a metabolic issue which then impacts the finely balanced immune and nervous systems? So these genes pop up because (as a population) we have some things a bit different, which normally isn’t an issue, but if...
  5. hotblack

    Genetics: CCPG1

    More analogy and speculation, so maybe better elsewhere but since I’ve started… I’ve been thinking more about some of these ideas and about concepts in computer science and how I’ve seen things go wrong. A little primer https://en.m.wikipedia.org/wiki/Garbage_collection_(computer_science)...
  6. hotblack

    After DecodeME - next steps for the ME/CFS community?

    It may be just one of many things which gradually starts to change ideas anyway. Maybe not for those with them backed in. But for new medical professionals coming through.
  7. hotblack

    DecodeME in the media

    Great! Looking forward to listening to this, thanks @dave30th and of course @Chris Ponting
  8. hotblack

    Teclistamab for ME/CFS

    There seems to be a very common ‘it won’t happen to me’ bias in humans. We can’t stop that and there are probably reasons why risky behaviour has had evolutionary benefits, but we probably should be aware of it.
  9. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    Would it be worth checking the statistical significance of say, all cytokine related genes? To get an understanding of if they were just below the threshold or nowhere near? Would that be useful info or even feasible? What about rare genes, how do they fit i to this picture? What do we need...
  10. hotblack

    DecodeME in the media

    I hadn’t thought about that. If we can get a bit more analysis done to add to the story we’ll get another shot at good headlines in 6 months!
  11. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    Thinking about this more widely now we have some genes, is it correct to say we’re not looking for a mechanism which requires all of these genetic differences to be present but a mechanism which each of these genetic differences makes more likely to occur? Or is it even broader than that?
  12. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I was just about to mention the readme :) That’s as far I got into the data though, so seem to have come from the opposite side of it as you. Great that you reproduced the manhattan plot. Are you using straight python or r for this?
  13. hotblack

    DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm

    That’s good. Another possible positive opener could be something like: What has surprised you most about these results? How has patient involvement improved the project/made it different and/or more successful than it would have been without? Is there anything you’d do differently now after...
  14. hotblack

    DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm

    From another thread and perhaps too forward looking for this webinar, but some questions on SequenceME and exactly what the plans are as there seems to be some discrepancies which some of us are unclesr on Is this because of analysis time or the need to get more samples...
  15. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Going through the candidate genes pdf and SLC9C2 is mentioned which I don’t think we’ve had much discussion of Which reminded me of discussion in the Zhang paper starting with his from @chillier There was a fair bit of speculation about shared ion channels, results in PrecisionLife and if...
  16. hotblack

    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    I think you’re right, the numbers and emphasis seem different from this announcement https://www.actionforme.org.uk/sequenceme-first-of-a-kind-genetic-study/ https://nanoporetech.com/news/oxford-nanopore-action-for-me-and-university-of-edinburgh-launch-groundbreaking-study-into-the-genetics-of-me
  17. hotblack

    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    Is this because of analysis time or the need to get more samples? https://megenetics.org.uk/our-projects/sequence-me-long-covid/ What are the pros/cons from a scientific or funding perspective of including a new cohort of LC patients? Would it be possible to do analysis of existing ME/CFS...
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