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  1. V.R.T.

    News from Canada

    This man has entirely too much influence.
  2. V.R.T.

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    I think it could be either. Hopefully preliminary results in two years.
  3. V.R.T.

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    A huge amount of the long covid phase 2 drug trials took around 2 years.
  4. V.R.T.

    Does anyone else get a runny nose, sneezing, coughing etc during PEM?

    Yes it tends to occur when my PEM is worse
  5. V.R.T.

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Although it says 2030 completion on the clinical trial site are we really sure it's going to take that long? Seems ages for a relatively small phase 2.
  6. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Hers she says feels like she's been drugged. Like it doesn’t feel like normal falling asleep. And she sleeps for a couple of hours typically when it happens. It's been the case since I met her, 2 years before we got ME but she had had post viral illness before then after glandular fever.
  7. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    I don't really know much about either
  8. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    How would one test this hypothesis? Is it something that can be measured somehow or would it be a therapeutic experiment? Do you mean several different ME/CFSes or different diseases like ME/CFS, narcolepsy and cataplexy all sharing the same mechnism?
  9. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Do you have any idea what it could indicate?
  10. V.R.T.

    Does anyone else get a runny nose, sneezing, coughing etc during PEM?

    This thread has been oddly reassuring as I thought it must just be me!
  11. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Interestingly i began to have paralysis episodes when I was still mild but beginning to deterioate a bit, but only in very bad crashes. Much more frequent now of course. I get the dystonia too. What makes you speculate that it is a key feature?
  12. V.R.T.

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Just anecdotally, I have episodes of temporary paralysis when I crash, and I know others do too. My partner who is also a pwME has episodes where she falls asleep very quickly in the daytime that do not feel to her like the regular feeling of getting sleepy and taking a nap. She has never been...
  13. V.R.T.

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    How bizarre - I found the T cell one, thought it probably wasnt that, looked further, found the autoantibody one you linked and then accidentally linked the T Cell one instead! I suppose I had both tabs open. Damn brain fog!
  14. V.R.T.

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    He claims its in a paragraph near the end of a paper, not sure which one. So i guess no data are provided. Yes I'm aware r.e. health rising, I was more wondering in terms of Lipkins claims about his work than any editorial spin that might have been put on it.
  15. V.R.T.

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    Lipkin mentions a 1999 finding of antibody titers to 'all sorts of things that are not even found in nature' @Jonathan Edwards isn't there something in your hypothesis about antibody response to 'junk' antigens? This bit... What do you make of the claims Lipkin makes that are quoted in the...
  16. V.R.T.

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    So does Lipkin have a history of these statements like Klimas does? Or is this out of character and therefore a little more believable? Of course he is trying to get his funding turned back on, so who knows. But it does seem we are seeing more and more of these statements...
  17. V.R.T.

    SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis, 2025, Moreau, Fluge, Mella et al

    I saw Moreau talk about this in an interview recently, didn't know Fluge and Mella were involved though. Very interested to know what others think. Is there a word missing at the end here? I can't quite parse it.
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