Search results

  1. V

    New Zine for those living with IACCs

    Is there a page/line limit for poems or is it also 1000 words?
  2. V

    Open [Tokyo, Japan] Study of the Efficacy and Safety for Rituximab in Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    You seem to have changed your tune somewhat on dara's possible efficacy, which iirc is anti cd38. Are you still sceptical of the cd19/20 drugs like those Schibenbogen is trying?
  3. V

    Open [Tokyo, Japan] Study of the Efficacy and Safety for Rituximab in Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Her trial that is designed to cure ME/CFS that is apparently underway according to this article sounds utterly bizarre. I mean I'd love if it were to work but...
  4. V

    B-Lymphocyte Depletion in Patients With ME/cfs: A Randomized, Double-Blind, Placebo-Controlled Trial (2019) Fluge et al

    It's interesting to read that as Mella seemed to question why Ritux phase 3 failed in his charite talk this year. He was talking about the fact they had to give a lower maintaince dose.
  5. V

    Suggest a name for Chris Ponting's ME GWAS project!

    I had no idea these names were coined by s4me members!
  6. V

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    Yes I think preparing counter arguments to respond with rather than bringing it up in anticipation is the way to go.
  7. V

    Reaction time deficits in a 3D virtual reality test in patients with ME/CFS, 2025, Ladek et al

    I relate to this too. I remember when I was mild I would feel like I was wading through tar in my worse crashes. Now I feel like I permanently have that same symptom.
  8. V

    Reaction time deficits in a 3D virtual reality test in patients with ME/CFS, 2025, Ladek et al

    Yes a notable increase in clumsiness and decreased reaction speed at mild. Now at severe things startle me and there is a notable delay before the physical reaction.
  9. V

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

    As nice as that would be (and it would be great) the rest of my existence will still be pretty unbearable without an effective treatment. I would be very happy to be able to tell people about my illness without the fear of disbelief and the shame and misunderstanding that BPS dominance causes...
  10. V

    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
  11. V

    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:
  12. V

    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...
  13. V

    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...
  14. V

    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.
  15. V

    Invivyd

    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.
  16. V

    Invivyd

    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.
  17. 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...
  18. 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.
  19. V

    The Concept of ME/CFS

    If only that was a barrier to success for them...
Back
Top Bottom