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

    Hopefully a bigger replication attempt is on the cards, especially if they think they've found therapeutic targets.
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

    I think this is a very good point. Especially if some respected researchers signed the letter, that might give it some weight. But we would have to be careful about who drafts it. I'm having flashbacks to those 'fund BC007 phase 3 because it definitely works even though the phase 2 hasn't...
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    News from PrecisionLife Ltd.

    Also from this article: 'The LOCOME and MELO studies “are feeding results and information to each other and accelerating the process,” he says. That means the Mechanostic test and repurposing studies should all be completed within two years—almost twice as fast as originally predicted.'...
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    "Emergency departments aren’t trained for Long COVID — and patients are paying the price" (The Sick Times)

    This is only possible if your ME/CFS is mild and you don't need any accommodations or mobility aids.
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    [Transcriptome] in PBMCs of [LC] at a median follow-up of 28 months [...] reveals upregulation of JAK/STAT [...], 2025, Fineschi et al

    There are two trials of Jak/Stat inhibitors in long covid currently ongoing. Baricitinib and another one I can't quite recall. Acknowledging the concerns raised above, if this were to be a genuine finding it would make those drugs much more compelling candidates. I believe Jonathan and his co...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

    This is a brilliant idea and the results will be useful for all drug trials in this field. It's good he stresses that. The cyclo phase 2 makes me more hopeful for this than I would be about another phase 2 after a positive pilot trial but we still need to wait for the data.
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

    This just goes to show how deep the predudice against ME runs in pharma and funding. You couldn't ask for more methodical and dedicated people to run your trials. The pharma part makes the least sense because as Mella says, if a phase 3 showed the same results as the pilot and the cyclo...
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    Trial Report Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy, 2025, Ruan et al

    Does anyone know if the placebo controlled Polybio Rapamycin trial is keeping track of these biomarkers? I am interested in this drug but I have seen very mixed results from the people who have tried it in long covid groups since it's been in vogue.
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

    As I understand it crossover means placebo and drug groups switch round after the initial phase right? So are they saying this will be the case for phase 3 or are they using it in a different sense here?
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    USA: The RECOVER Initiative - Long Covid research

    So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.
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    USA: The RECOVER Initiative - Long Covid research

    My point is that there is very clearly a phenomenon of post infectious OI with tachycardia on standing, and maybe POTS isn't a good name for it, and maybe the research and practice around it can be dodgy but there is absolutely a real condition that people suffer from.
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    USA: The RECOVER Initiative - Long Covid research

    The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic. Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I hope there is. I would love to be able to go to gatherings and play/attend gigs again if there was a really effective treatment. In some ways being functional but still shut out of the world would feel like a much more bearable but still quite rubbish sort of purgatory. I have also been...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    This is a very important point. There is a RECOVER long covid IVIG trial but frustratingly it's for POTS. And i think another arm of that trial is exercise... But yeah IVIG and similar might be a worthwhile thing in the short term if it can keep some people out of a severe state. Care costs and...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Unless it resolves in the same way it sometimes (but rarely) seems to later in the course of illness. Maybe whatever lever or widget is holding the dysfunctional signalling loop open, as in you and @jnmaciuch's metaphor from a couple of weeks ago (which I may be misremembering), spontaneously...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Doesnt that depend somewhat on whether the mechinism behind short term resolving Post Viral Fatigue/ Long Covid with PEM is the same as the one behind ME/CFS? Rather than ME/CFS is some other signalling loop or whatever happening on top of that initial post viral illness, or a totally...
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    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Ironically without a BPS approach I likely never would have gotten sick enough to consider assisted suicide.
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Is this last part true? I mean in real terms of course it is, and maybe my mind has been warped by the slow pace of medical research, but surely existing drugs could go straight to a phase 3 trial if we gain from DecodeME etc evidence that they are likely to work? And if that were to happen it...
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    Fundraising page for Ian Lipkin's ME/CFS Research - Center for Infection and Immunity

    Notable that they do not mention any of the clinical treatment trials that Lipkin claimed they were close to when news of the funding pull broke, and that are mentioned several times elsewhere in this text, in their five year plan... Although perhaps they were thinking they would have strong...
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