Search results

  1. V

    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.
  2. V

    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.
  3. V

    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...
  4. V

    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.
  5. V

    The Concept of ME/CFS

    If only that was a barrier to success for them...
  6. V

    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.
  7. V

    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'
  8. V

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

    Will there be a way for severe patients to participate?
  9. V

    United Kingdom: Sussex & Kent ME/CFS Society News

    Made a similar calculation and came to the same conclusion
  10. V

    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?
  11. V

    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?
  12. V

    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...
  13. V

    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...
  14. V

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I actually do my best to avoid all psychosomatic threads. Today I have accidentally clicked through onto two of them and had a bit of a rant. You are right of course but I do feel a bit better now.
  15. V

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I am rapidly beginning to lose my patience with this messaging. Seeing the prophets of the false ideology that has deeply harmed me claiming that the information that would have saved my functioning is dangerous and causes harm is just too repulsive for words. The idea that it is knowing the...
  16. V

    UK Article June 2025: Doctors said I had ‘medically unexplained symptoms’. I have to treat myself

    This is so crazy. It's all so mad. Honestly madder than some of the antivax/wellness stuff. Like this is demonstrably more insane than, for example, people thinking that a drug or supplement that has no effecacy helps them. But cancer patients didn't use to be told out of fear they'd give up...
  17. V

    UK Article June 2025: Doctors said I had ‘medically unexplained symptoms’. I have to treat myself

    I am so sorry this happened to you. I can't imagine how hard that must have been. I know I bring it up a lot but I knew whatever was happening to me wasn't psychosomatic until my GP gaslighted me about it. He also basically refused to diagnose me, saying I 'didn't want' the label without...
  18. V

    Update from the Windsor Castle Research Event (Action For ME)

    I think I remember JE saying a while back there were already ideas on drug targets, and some potential ones may well appear when the dust has settled on DecodeME etc. But I may be misremembering. I have thought about this with regards to clinical trials. Because the risk of being worsened with...
  19. V

    UK Article June 2025: Doctors said I had ‘medically unexplained symptoms’. I have to treat myself

    This insane approach has dogged my entire adult life. Like has anyone stopped and thought how insane it is to claim that 40% of people seeking medical care are somatising? It's bonkers, it makes no sense. And telling people who are having extremely distressing symptoms that they are just normal...
Back
Top Bottom