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  1. V.R.T.

    OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

    No it's probably me! I felt like I could almost grasp it the second time I read it
  2. V.R.T.

    OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

    It's probably a mark of how bad my brain fog is today that I can't tell if this post is a joke :dead:
  3. V.R.T.

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Well, that's very disappointing but not at all surprising. I guess the hope for UK research funding lies solely with the Edinburgh/AfME initiatives. Obviously I want treatments as fast as humanly possible, but in the meantime I would really love it if I could be treated like what I am - a...
  4. V.R.T.

    OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

    Surely it is possible that there is one mechanism for the fatiguability and another one for PEM, and that they show up together in ME/CFS because the capillary thickening is caused by a process downstream of the one that triggers PEM? On the other hand, weren't these biopsies taken from mild...
  5. V.R.T.

    United Kingdom: Dr Suzanne O’Sullivan (BPS neurologist)

    How can anyone delude themselves this way let alone trained medical professionals? It never ceases to alarm me.
  6. V.R.T.

    Dr Michael Scoma

    What does this even mean? We don't know the root cause of ME/CFS. This is exactly what I'm talking about, the viral persistence lot seem to have an assumption of cause that preceeds or superceeds the need for evidence.
  7. V.R.T.

    Invivyd - monoclonal antibodies

    I have to say I feel pretty skeptical about anti sars cov2 monoclonals as a long covid treatment. I just haven't seen much compelling evidence that viral persistance is a driver of symptoms. And all the antiviral drugs that have been tried so far have had no efficacy.
  8. V.R.T.

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

    I have always gotten a runny nose, sneezing and sometimes coughing fits when I am having the kind of PEM that feels seriously viral. It happens far too often to be explained by catching colds. It is part of the reason I thought my immune system had been weakened by my triggering strep infection...
  9. V.R.T.

    USA: The RECOVER Initiative - Long Covid research

    There has been no word on Recover TLC for a while. It would be good to know what drugs they are planning to try although not holding my breath after the drug choices for the first round of trials.
  10. V.R.T.

    The Concept of ME/CFS

    If only that was a barrier to success for them...
  11. V.R.T.

    The Concept of ME/CFS

    Ah so I knew the Fukada critera weren't great but don't know much about them as a researcher.
  12. V.R.T.

    The Concept of ME/CFS

    I didn't know this. Was it by BPS clinicians? That might explain the use of the term 'malaise' which imo is not that much more helpful than 'fatigue'
  13. V.R.T.

    United Kingdom: Action for ME's PRIME project - research infrastructure

    Will there be a way for severe patients to participate?
  14. V.R.T.

    United Kingdom: Sussex & Kent ME/CFS Society News

    Made a similar calculation and came to the same conclusion
  15. V.R.T.

    Review Redefining Mitochondrial Therapy for ME/CFS: The Case for MOTS-c, 2025, Klimas et al

    So do you think there's a chance it could work then? Setting aside the unclear hypothesis/reasoning?
  16. V.R.T.

    Review Redefining Mitochondrial Therapy for ME/CFS: The Case for MOTS-c, 2025, Klimas et al

    I have just googled this peptide and seen it is considered an exercise mimetic. Isn't there a possibility it could mimic the biological processes of exercise that trigger PEM, since we don't know what they are yet?
  17. V.R.T.

    USA: News from Solve ME

    'This work matters to patients because it suggests that treatments that help immature B cells use energy efficiently and survive immunological attacks may help people with ME/CFS.' What treatments do this? Fluge and Mella and Schibenbogen are pursuing B Cell depleting drugs, which don't sound...
  18. V.R.T.

    PEM-like descriptions and accounts in non-ME illnesses

    I've discussed this elsewhere but I think I had a prodromal phase of about 6 years. Although sometimes I think about certain details, like the fact my hangovers tended to get nastiest almost exactly 12 hours from my last drink rather than as soon as I woke up, and how much sicker I tended to...
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