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  1. J

    News from Scandinavia

    Here we are with Olav Mella and Ola Saugstad in Oslo! (I have more photos to share but this one was too good to wait for). ——————————————— Where is Dr. Fluge?
  2. J

    Hypothesis The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maureen R. Hanson

    I’d go further and call it misguided, pointless and probably harmful.
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    Combine TUDCA with sodium phenylbutyrate which you can get for about $1000/kg and you have a drug that costs $160,000 per year—amazing how that works.
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    In terms of compounds to address this pathway there isn’t much besides salubrinal—seems like pharma isn’t interested. By constrast the IDO pathway, where pharma is interested because of cancer, there are a bunch of compounds in development— Phase 1 and preclinical...
  5. J

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    Don’t want to sound too negative but I am not optimistic about Relyvrio. Also not cheap! Price of New A.L.S. Treatment Will Be $158,000 Per Year, Maker Says...
  6. J

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    Merged thread Best hand-out for GP’s clueless about MECFS—seeking recommendations Any suggestions or please point me to existing threads. Saw this from Bateman et al. — but maybe a bit on the heavy side. Thanks. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    Mind if I ask why you blurred out 6 of 10 of your regimen steps (and what is in those steps)?
  8. J

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    “An EC50 of 15 micromolar is generally considered not good enough for drug development. ” From here https://www.alzforum.org/news/research-news/salubrinal-rescue-new-compound-fights-er-stress
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    This was a PNAS direct submission, which is almost always better than the contributed track. See here https://scholarlykitchen.sspnet.org/2016/01/14/pnas-tighter-editorial-policy-improves-nas-papers/
  10. J

    Prolonged indoleamine 2,3-dioxygenase-2 activity and associated cellular stress in post-acute sequelae of SARS-CoV-2 infection, 2023, Guo et al

    BMS drug is IK 175 https://ir.ikenaoncology.com/news-releases/news-release-details/ikena-oncology-announces-initial-clinical-data-ik-175-program/ Bayer drug is BAY 2416964...
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    Alienation and the Human Being (ME/CFS) Samuel Kronen

    Again I’m amazed that severe MECFS patients are able to crank out these 10,000 word essays. Impressive! In a Tweet he writes “I'm very sensitive to the fact that many people with this illness won't be able to read through the whole piece, but the first part is all about the illness and its...
  12. J

    Alienation and the Human Being (ME/CFS) Samuel Kronen

    Long read (haven’t read yet but he is a good writer) https://www.samuelkronen.com/p/alienation-and-the-human-being?utm_campaign=post&utm_medium=web He has some Tweets about the article but I cannot embed them—help anyone?
  13. J

    News from Germany

    German Chancellor Scholz answering a question from a Long Covid patient, with auto-translated auto-generated English captions. He says he personally knows a young man lying in a dark room all day…
  14. J

    Well-known, famous people with Covid-19 and Long Covid

    https://www.huffpost.com/entry/gop-ex-sen-inhofe-retired-due-to-long-covid-after-opposing-covid-aid_n_63f8e9b7e4b0735bf8777e81 GOP Ex-Sen. Inhofe Retired Due To Long COVID After Opposing COVID Aid
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    Media articles about endometriosis

    Merged I Wasn’t Hysterical. I Was Sick. (about endometriosis) Endometriosis—good article. https://www.thefp.com/p/i-wasnt-hysterical-i-was-sick Since age 15, I have experienced exhaustion, indigestion, and recurring nausea. I was grateful when I got into Princeton, but when I arrived, I...
  16. J

    USA: The RECOVER Initiative - Long Covid research

    Copy of tweets: Todd Davenport @sunsopeningband I don’t know what NYU Langone charged for facilities and administration, but it could be as low as ~25% or as high as ~60% unless they negotiated higher or lower. On over half a billion dollars, that’s a hell of a lot of “facilities and...
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