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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    [responds to a post that was deleted by the poster] there are also lots of immune related medications in trial by private individuals and groups that might answer this question before research tbh please take this with the usual grain of salt of "self reporting, online data, could be placebo"...
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    also just can someone test a drug that is not pulled out of their arses and is so dangerous, im so worried about future trials that could significantly hurt people and this is from someone who is prepping to try cyclo after like 8 billion tests
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    for once we are in complete agreement haha, this worries me greatly
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    apparently "Avi Nath at NIH tells me UCSF is trying to launch a clinical trial of a class of drugs called checkpoint inhibitors in ME/CFS. The paper he published yesterday mentions these drugs as a target for testing in the disorder, on the theory that they can help clear persistent antigens...
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    its not useful PEM, nor did they do any day after or longitudinal stuff. useless
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    as someone with long covid who is newish to fucking understanding the shit storm (and life saver) that is the immune system I am so sorry that Me patients have to put up with this collosal bullshit. Its why i refuse an ME diagnosis and only accept long covid. We know patients who are literally...
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    exactly lol thank fuck for doctors like schieben honestly. Brain fog is by FAR my most disabling issue, this paper is not fit for toilet paper tbh
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    this statement does not follow "No matter how much the body tries to fight whatever bug is in its system, it can’t win.", it could also be some form of internal autoimmune or autoimmune like issue. We simply dont know from this
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    you have mentioned t cell populations in LC and ME patients before, is there anything meaningful in this data other than "immune cells are activated in this population indicating something is happening maybe" - which we have heard a million times but no one seems to be able to work out the god...
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    "During testing, all but one PI-ME/CFS participant reached the peak respiratory exchange ratio (RER) of ≥1.1 and there was no difference between the groups" is this not quite extreme cardio for a ME patient? genuine question i dont know
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    it made me very sad to see that they pushed participants to extreme exercise. i cant imagine how they suffered after
  12. S

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I honestly thought i was going mad. To keep it simple, as i read the data it seemed to be they were saying stuff like "population totals of certain cells like NK cells and T cells are no different" and that there are "indications of chronic activation" sort of type stuff, including the dodgy...
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Can anyone break down what the T cell findings are here, and how they came up with this claim "immune checkpoint inhibitors may be theraputic by promoting clearance of forgein antigen" - did they find foregin antigen or active t cells? or both, this makes little sense to me ngl
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    ive read the paper, cyloc makes more sense tbh but im scared
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    yes ive been made aware of this, its again a reasoning for the short/intense approach if this doesnt work i have a choice of medium level steroids for a long time Vs something else, i will have a long think because whilst steroids are amazing, i dont want to mess with it long term
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    luckily my actual doctors disagree, and thats why ive been able to find things that help. I am uncertain about this long term, its likely I will end up doing chemo either at home or in India anyway, at this point its damage limitation
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    that and the many negative side effects
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    ? i. https://www.cell.com/cell-reports-medicine/pdf/S2666-3791(22)00195-1.pdf ii. https://www.nature.com/articles/s41467-023-40012-7 iii. https://www.science.org/doi/full/10.1126/science.adg7942 iv. https://www.sciencedirect.com/science/article/pii/S088915912300363X v...
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    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    the treatment is for inflammation, reducing cortisol to "stress" makes no sense within my own context
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