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  1. J

    Unutmaz post about AI model use for MECFS

    Link to Google Docs for the OpenAI Deep Research: docs.google.com/document/d/1Y7… https://docs.google.com/document/u/0/d/1Y7vf82p0MDL9iFY8TWHtmt4nPXvN5kJ2--nFPuom7vQ/mobilebasic Link to Manus AI analysis: docs.google.com/document/d/1wY…...
  2. J

    Unutmaz post about AI model use for MECFS

    “Let me clearly state from the outset: these two reports, generated in a matter of hours, could potentially accelerate our understanding and treatment of this disease by months or even years!” Instead of these grandiose statements he should state specifically what new specific insights he got...
  3. J

    Unutmaz post about AI model use for MECFS

    “In summary, Manus AI is a shockingly powerful AI agent, comparable in capability to Deep Research combined with an OpenAI operator. This clearly marks another DeepSeek moment or even bigger than that, thus perhaps we should call it a “Manus AI moment” and I believe this will further accelerate...
  4. J

    Unutmaz post about AI model use for MECFS

    I read through some of the Manus thing—not as impressed as he is—e.g. it suggests rituximab as a treatment….we know how that turned out.
  5. J

    News from PrecisionLife Ltd.

    Spill the beans on the 9 drugs!? The fact that they say the nine drugs are safe is not encouraging. If they said it was something dangerous like this https://en.wikipedia.org/wiki/Melarsoprol, I’d be more inclined to believe it. I’m only being partially facetious.
  6. J

    Trazodone for Insomnia

    Yes you can take as needed—no problem for me. “Trazodone is usually prescribed to be taken on an ‘as needed’ basis, but it is sometimes taken regularly.” https://keltymentalhealth.ca/r/trazodone-desyrelr
  7. J

    IV IG: Intravenous immunoglobulin infusions

    There have been RCTs done. https://me-pedia.org/wiki/Intravenous_immunoglobulin
  8. J

    IV IG: Intravenous immunoglobulin infusions

    @Jonathan Edwards If IV IG works, can you please explain the putative mechanism? Something involving FcRn https://en.wikipedia.org/wiki/Neonatal_fragment_crystallizable_receptor? Thank you.
  9. J

    IV IG: Intravenous immunoglobulin infusions

    My son, 13, with Long Covid and polyneuropathy has been receiving intensive immunoglobulin infusion therapy (IVIG) since January 25. Previously Bell 10 for a year, now within 2 months it has risen to Bell 50, and the trend is rising. PEM almost no longer exists. He can hardly believe his luck -...
  10. J

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    NIH reels with fear, uncertainty about future of scientific research https://wapo.st/4h8aiZx
  11. J

    Cerebrospinal fluid metabolomics, lipidomics and serine pathway dysfunction in [ME/CFS], 2025, Baraniuk

    Not to sound pedantic, but he uses “we” in the abstract for a single author paper. Also getting red flags for a single author paper with so much data
  12. J

    Very severe French patient needs help

    Saw this—maybe millions missing France doesn’t have an @? @MEActNet @MEActNetUK @MMissingGermany @MMissingHolland @MMissingAus @MMDublin @MEActNNE @IrishMECFSAssoc
  13. J

    Very severe French patient needs help

    I'm using my last energy to write this please please please Last time I was alone. I can't have this happen again. Being tortured for months in mistreating hospitals letting me die of starvation and awful conditions for pwME please, humanity, care, help. Beg you
  14. J

    Very severe French patient needs help

    Extremely severe ME gastroparesis almost total paralysis muscles dying can't eat can't swallo w can't digest can't move almost can't speak soon can't use phone can't communicate help please France. Find me a doctor I beg you #pwme #mecfs dont let them torture me again please
  15. J

    Recent Virus Research Should Raise Alarm Lipkin & Baric, NYT 2025

    https://www.nytimes.com/2025/03/03/opinion/risky-virus-research.html?unlocked_article_code=1.1E4.yFuc.l4GxtQ34-Ase&smid=url-share
  16. J

    Trial Report Randomized, waitlist-controlled trial of Cordyceps sinensis mycelium culture extract (Cs4) for long COVID patients in Hong Kong, 2025, Chen et al

    This product is available on Amazon but for some reason I can’t get the link to show up here. Here it is on iherb. https://www.iherb.com/pr/mrm-nutrition-cordyceps-cs-4-strain-60-vegan-capsules/4670
  17. J

    Trial Report Randomized, waitlist-controlled trial of Cordyceps sinensis mycelium culture extract (Cs4) for long COVID patients in Hong Kong, 2025, Chen et al

    Cs4 placebo could not be blinded due the unique color and smell, therefore the waitlist control group received Cs4 after the first waiting period
  18. J

    Psychedelic-assisted Therapy as a Promising Treatment for Irritable Bowel Syndrome 2025 Mauney et al

    Center for Neurointestinal Health, Massachusetts General Hospital, Harvard Medical School, Boston, MA Have they found intestines in neurons? That’s an important finding!
  19. J

    How often is ME/CFS diagnosed in people who don't have it?

    Possible overlap with neuro-sjogrens esp. with fatigue and brain fog symptoms? Some people on here report dry eyes/dry mouth symptoms.
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