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  1. hotblack

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

    Thanks for clarifying what happened @Kiristar It’s great that researchers and charities are doing what they can and a real shame the government hasn’t got behind it more.
  2. hotblack

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

    Yeah, I think the idea of a research hub based in Edinburgh was pushed for by various people before the Delivery Plan and there’s the ME Genetics Centre of Excellence. It would be great but is in a way a bigger and more traditional approach. (Edit:fixed an unfortunate typo!) I like the idea...
  3. hotblack

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

    Is the plan to complete all other analysis outlined in the Data Analysis Plan?
  4. hotblack

    DecodeME in the media

    Aha! In that case the seem very accurate.
  5. hotblack

    DecodeME in the media

    I’m not familiar with the podcast platforms but am very happy to do anything I can to help if this is something @dave30th wants to do. Extracting the audio and re-encoding it is easy enough. There may be some automated ways of doing this. Or we could do it manually.
  6. hotblack

    DecodeME in the media

    Nice text summary but what format are those timestamps in? Because they don’t match anything I can think of…
  7. hotblack

    DecodeME in the media

    Skip to 14:22 Glad it’s been helpful for others. Yes, I have that problem with Youtube, it hates running in the background and loves throwing loud adverts and generally being unhelpful.
  8. hotblack

    Genetics: CA10

    Thanks, very useful! So you still have the issues @forestglip outlined above? I thought I read somewhere that SNPs where defined as when an allele was present in greater than 1% of the population? And so it was that which defined what locations were on the arrays used, because they’re common...
  9. hotblack

    Genetics: CA10

    Very much how I feel about a lot of this! There are points when part of a topic seems to makes sense, but other times… So really useful to read this discussion and have the important nuances gone over. Thank you both! Some of this uncertainty is the result of looking at SNPs rather than...
  10. 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...
  11. 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...
  12. 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...
  13. 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...
  14. 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)...
  15. 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.
  16. hotblack

    DecodeME in the media

    Great! Looking forward to listening to this, thanks @dave30th and of course @Chris Ponting
  17. 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.
  18. 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...
  19. 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!
  20. 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?
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