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  1. ChronicallyOverIt

    Rapamycin Pilot Treatment Trial for ME/CFS

    Weirdly they suggest doubling the dose to two times a week mid video when talking about dosing. They say some patients do better this way. To me it sounds like they have their mechanism of action wrong here then. Wouldn’t doubling the dose be stepping into immune suppression territory not the...
  2. ChronicallyOverIt

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    Donated $200 usd. Will point people to this! Hard buy in for the US without 501(c) for tax exemption!
  3. ChronicallyOverIt

    Amatica Patient-centred chronic disease research

    This post has to be a joke 3 controls and most of the ME/CFS sitting between them. https://twitter-thread.com/t/1965418146329661747 Acting like you can make anything from this…. This guy getting popular and is just spreading misinformation. I’m worried where this will go.
  4. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    The author brought this up in the talk, how PET is expensive but cheaper than running a patient through 1000’s of tests with no actionable results. Quite a bit of the talk was on how this could be diagnostic. That other diseases use PET regularly I hope they upload the talks soon!
  5. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    Is this linked at all to the “crunchy” neck and stiffness people sometimes report: https://www.s4me.info/threads/muscle-and-joint-stiffness-worsened-by-activity.45821/page-3#post-636399
  6. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    Hopefully it’s real, there was no numbers presented just some screen grabs of the PET scans. She also said people thought she was crazy to do full body scan and after her findings she was grateful she did since they saw such odd results. There was brief mention that the odd quadricep results...
  7. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    The PET presentation I did catch from the Stanford group did not go into specifics this deep, it was more of an overview showing full body PET with TSPO was signalling far stronger and different areas than healthy controls, notably the shoulder/neck area (they alluded to “coat hanger syndrome”)...
  8. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    @jnmaciuch seems like these will be recorded and posted after, sounds like they are devising their own tracers at Stanford now which was highly interesting.
  9. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    @jnmaciuch in the Stanford PET scan presentation they are using a new tracer called GPR84. I remember from the Jared younger thread you were versed in tracers. Have you heard of this tracer before? Thoughts on it? Also this new TREM1 tracer seems interesting
  10. ChronicallyOverIt

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    Joined late, pretty unimpressed with this Robert Naviaux presentation, seems like a mish mash of mitochondrial buzz words. Also presenting on red blood cell deformation and mitochondrial dysfunction (he works with prusty) as fact.
  11. ChronicallyOverIt

    [IgG] Complexes from infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion, 2026, Prusty+

    Watching the OMF Symposium right now Robert Naviaux just presented on this as fact…. What the hell is OMF doing… This guys presentation is a mix mash of mitochondrial buzz words
  12. ChronicallyOverIt

    Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?

    I wish science with clinical trials was cut and dry but one thing I’ve learned is that placebo is huge. In my local group a woman was in the Reclaim trials for pentoxifylline she swore she was having stomach upset but was ok with it because she was getting an increase in baseline and could now...
  13. ChronicallyOverIt

    Amatica Patient-centred chronic disease research

    One thing as an engineer that bugs me is this guy Jack markets himself as “ex-aerospace engineer” has never worked in industry, might have a degree but that essentially it. That’s a red flag to begin with for me, selling himself way bigger, reminds me of Silicon Valley hype. Second they don’t...
  14. ChronicallyOverIt

    Is ME/CFS something to do with Butyrate?

    Other than treating H pylori and parasites I don’t think there really is (naturopaths will throw a fit here). There’s a vague idea of unbalanced flora but no one right now is in a position to “fix” it or say it’s 100% wrong. I had a friend who worked at Ubiome, they made tests for dysbiosis and...
  15. ChronicallyOverIt

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    I think there’s tactful ways of doing this. Presenting it weekly on youtube to the patient population of sick individuals with high hopes is not one of those
  16. ChronicallyOverIt

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    This is rather naive, but what if depression is a secondary factor . As in you become depressed due to ME? Could this signal be due to being depressed because you have ME? Or are these questionnaires narrowing in on pre-ME depression?
  17. ChronicallyOverIt

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Man I wish there was a way for US people to donate and it be tax deductible. Donations for 501(c) charities always go up at the end of the year for tax reasons. It’s a lot easier to get large donors when it’s tax deductible. How do we get OMF’s eyes on this? Can they allocate funds directly to...
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