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  1. hotblack

    United Kingdom: Action for ME (AfME) news

    This Friday we have the webinar with updates from Audrey Ryback and the PrecisionLife team, AfMe appear to be accepting questions in advance, I wondered if anyone had sent any in or maybe we could come up with some together?
  2. hotblack

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

    At the other end of the scale I did have an amusing (well, for me) thought. What if we do find a complete cure? Many/most of us would then actually need and benefit from the sort of rehab that we’ve been offered for years to get our bodies working again! And probably to work with some of the...
  3. hotblack

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

    On reversal of any neural plasticity changes once the feedback loop is stopped. I feel confident this could be possible, just a feeling from my experiences within my illness. But also, to be honest, even if something described here just got me into a steady state of the best I’ve been since...
  4. hotblack

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

    Fair enough. You know best what your aims are and the ways of working within that world and community. Glad you can discuss things more philosophically here. I’m obviously positive about the paper because of the relevance to me and my life, but I’ve also just found it really interesting. And I...
  5. hotblack

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

    I wonder if there is a way of emphasising this in the paper? I’m not sure how clear this subtlety will be to people who haven’t had the benefit of talking to you about these ideas for weeks/months as we have. Lay and perhaps scientific readers may (and I think I have already seen this) get hung...
  6. hotblack

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

    I understand people’s concerns with some terms due to misuse by and connotations with things people who have misused them have said or done. At the same time I can’t think of this as being anything other than a biological hypersensitivity or perhaps overreaction, or indeed a hyper-vigilance...
  7. hotblack

    Forum software update - Forum unavailable weekend 7th to 8th June

    Thanks to everyone involved and good luck with the update. May the SQL gods be kind to you and hope you encounter no PHP gremlins on your travels.
  8. hotblack

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

    In case anyone newer to the thread missed this, audio versions of the paper are available to listen to here, now with a few fixes and a higher quality ‘Studio’ version https://u.pcloud.link/publink/show?code=kZLPeS5ZBEzVhhjXk8hM18y29vgEGVG6zSvk Any questions, comments or feedback please use...
  9. hotblack

    Was there a gap between trigger and onset of your ME/CFS?

    For a while I’ve been wondering about running a different poll, but I’m not sure how to word it. Because I could accept any of these explanations - there was a clear triggering event which started it all with no gap - there was clear triggering event but a gap before I got full ME/CFS - there...
  10. hotblack

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

    Is it over responding? That would imply lots of something being produced, but it sounds like the point is, there isn’t. It is more an over-reactivity or sensitivity or hypersensitivity to particular things isn’t it? Overt readiness? Primed immune response? “Immunological and potentially...
  11. hotblack

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

    Treatment, an area I’ve avoided thinking too much about, but since the paper mentions it…. it looks like what we’d be hoping to do here is find something to stop the feedback loop? We’d then be back to our pre illness state (yey) but still presumably have a potential susceptibility for future...
  12. hotblack

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

    For me it’s been absolutely fine with flu but terrible with the covid ones. So I assumed it’s more complex and related to specifics of antigen rather than just severity or anything which stimulates immune activity. But there’s also a question of systemic versus localised. Does the antigen need...
  13. hotblack

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

    The more I listen to and think about this paper it does have the whiff of a Grand Unified Theory of chronic auto-inflammatory/immunity-like diseases. It would be good if it can start getting others outside the ME/CFS world interested. So how much this should be seen as a call to arms for the...
  14. hotblack

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

    You’re right. Looks like it’s vitamin B2 (riboflavin) and B9 (folic acid) metabolites. May be relevant for them but was just a passing thought really.
  15. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    May be worth reminding everyone of the blog post on the analysis plan. And here’s a direct link to the delicious pdf with all the details. I’m not going to pretend I understand it all, but there were bits I understand a bit more about now, compared to when the project started, thanks to my...
  16. hotblack

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

    While reading up on MAIT cells I saw that they recognise vitamin B compounds. Could one reason that some of us respond well to doses of B 12 or B complexes be nothing to do with “energy” but that we’re giving MAIT cells something else to be interested in so distract some from their roles in this...
  17. hotblack

    Could nerve damage or retrograde microtubule based transport in axons explain the delay associated with PEM?

    I think the proposal is more the timing of initiation of PEM after an action which triggers it and then some recovery time if there is no subsequent triggering event? The reference to damage may or may not be directly relevant but gives examples of these timings. I wonder if there could be...
  18. hotblack

    Preprint Circulating Antimicrobial Peptides as Biomarkers of Inflammation and Airway Dysfunction After Marathon Running, 2025, Lingitz et al

    Proof that marathons and ultramarathons are bad for your health! Interesting for the context of physical stress on the body though.
  19. hotblack

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

    I’ve mainly been in recovery and digest mode. Looks like discussion is moving fast here, I need to catch up. But a couple of thoughts. As it fits in with and expands on much of what we’ve been talking about here in a clear framework, perhaps it’s unsurprising that I really like it. It’s an...
  20. hotblack

    Preprint Virus-Induced Endothelial Senescence as a Cause and Driving Factor for ME/CFS and Long COVID: Mediated by a Dysfunctional Immune System, 2025, Nunes +

    Virus-Induced Endothelial Senescence as a Cause and Driving Factor for ME/CFS and Long COVID: Mediated by a Dysfunctional Immune System Massimo Nunes, Loren Kell, Anouk Slaghekke, Rob Wüst, Burtram Fielding, Douglas Kell, Etheresia Pretorius Abstract Myalgic encephalomyelitis/chronic fatigue...
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