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  1. hotblack

    Heat vs. Fatigue: Hyperthermia as a Possible Treatment Option for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2025, Hochecker

    Pretty similar although my new limit is a bit higher, above 22C room temperature (some variation for the dew point) my body goes weird. Ideally I like below 20. Summers are bad bad bad Compared that to my former life enjoying heat, be it a beach, steam room or sauna, running in a jungle… I’ve...
  2. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    Thanks for the really clear explanation and grounding of something that was just a feeling for me. I think like you I’m really pleased they’re involved. But they will need to find a better way of telling their story and communicating with patients. Especially as they seem focused on drug...
  3. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    Pretty much every question that popped into my head while going through this paper was answered in this paper. That gives me faith in the results. While I have more unanswered questions after going back to Fluge et al 2016. Which I suppose makes sense, Fluge was more exploratory, this was...
  4. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    Same. I think I’ve discussed this with @jnmaciuch before and our experiences appear to be quite different wrt PEM triggering. And if the changes in blood were only visible in people after triggering PEM presumably this would then be measuring some other, downstream effect of what happens to...
  5. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    Seems very thorough to me so far. Normalising for cell count is an interesting addition that they didn’t do in Fluge et al (2016). And could explain a lot. Beyond that sample size is obviously the clearest difference. This study also seems to use only women which could be a difference...
  6. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    The study has almost as many severe patients as Fluge et al 2016 (5 out of 67 versus 6 out of 12). They’re being very fair in their stated limitations but the sample size is so much bigger.. But the difference in cohorts is interesting. I wonder what it would look like comparing data from just...
  7. hotblack

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    Plenty of us have given samples to the CureME biobank but I’m not sure how these samples being frozen would impact things? Anyway they’re doing free samples for researchers atm Make that n=2 :)
  8. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    Absolutely! I was very pleased to hear clear results and am excited to go through the paper. Same, in both thermoregulation and like @forestglip not realising who you were. Congratulations on the paper!
  9. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    I think @Sasha is right, and I’m not sure if it’s just that there is a black box that’s the communication issue. Do most of us really understand all the details of what Audrey is doing? It’s more about how well they communicated what they’re doing. - This is the question we set out to answer...
  10. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Looking forward to it! Also feel free to give us a topic list to brush up on beforehand. We can all find some more videos and books to read :)
  11. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    That’s my understanding too, it’s not saying we’re completely different diseases more that people have more of a predisposition towards certain symptoms. And since they’re focused on symptomatic relief through drugs which work on certain pathways it makes sense to look at it that way. That’s...
  12. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    With this is mind, if I’m understanding correctly, this is why it would allow for both people feeling better and people feeling worse, depending upon the stimulus. So I can feel better after one immune trigger, whereby the T cell population involved and which expands are ‘not ME/CFS type’. So...
  13. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    Audrey is now looking at proteomics and the Beentjes paper. So more exciting stuff from her and a really clear presentation I thought. PrecisionLife. An odd definition of PEM and saying they can see it in mice… (maybe I misunderstood) Beyond that it seems to be repeating what we’ve already seen...
  14. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    Really interesting so far. Looks like Audrey has failed to reproduce this. No difference between people with ME/CFS and healthy controls. Paper submitted and should be live very soon!
  15. hotblack

    Medication Use and Symptomology in North American Women with ME/CFS, 2025, Pochakom et al

    It makes you think about how many have been prescribed in ineffective or even worsening medications. Stopping antidepressants can come with a whole host of side effects too. This may put people off stopping them.
  16. hotblack

    Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

    We have threads discussing the PrecisionLife papers and other research which it looks like the hope is to replicate here, but I found these write ups from @Simon M very digestible overviews. Well worth reading if you’re waiting for today’s webinar...
  17. hotblack

    [EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+

    Thank you! Where did you find that? I couldn’t find anything clear and went around in circles.
  18. hotblack

    [EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+

    Genecards links for easy perusal, sorry I lost the nice colour coding and not all have directly associated genes, I haven’t checked them all individually yet, just generated the URLs
  19. hotblack

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Same. I’m really interested in which bits people are and are not able to look at and how people can go about testing the ideas. Look forward to hearing more.
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