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  1. 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

    Iirc F&M just say antibodies in general. E.g. here https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/
  2. V.R.T.

    Persistent Attenuation of Lymphocyte Subsets After Mass SARS-CoV-2 Infection, 2025, Jiang et al

    The idiocy and cynicism of the corporation/government driven movement to gaslight the public into thinking 'covid is like totally fine now what are you even worried about' never ceases to disgust me. None of my non ME/LC friends take any precautions anymore. I worry about them - they have been...
  3. V.R.T.

    The feeling of being "poisoned" - what do we know about it?

    I wouldnt compare it to a regular hangover, but back in the day I regularly drank myself to the point of experiencing alcohol poisoning or alcohol withdrawals. And that really was similar to that total poisoned feeling form of PEM. Although as I've said I think I may have had a prodromal form...
  4. V.R.T.

    Preprint Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial, 2025, Maestri, Bonilla+

    I found the above for IL1R2 And this for IL1RL1 I wonder if anyone more knowledgable thinks their association with PEM here (and IL1R2 being associated with fatigue in the first study I linked) could make some sort of mechanistic sense?
  5. V.R.T.

    Preprint Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial, 2025, Maestri, Bonilla+

    This looks really interesting. A fair few cells/molecules come up here that have been discussed before. Have we seen these come up before? Interesting that this came from the STOP-PASC cohort.
  6. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    What would that look like in this context? And what in particular would be replaced by drugs? The neurons or something they produce? (I assume the latter as the former sounds highly experimental/impossible).
  7. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    I have now edited my posts upthread so as not to distress anyone else but yes I agree. I saw neuron loss and thought alzheimers parkinsons permanent damage etc etc and got in a bit of a mental spiral. Thankfully the sensible observations made on this thread have calmed me down significantly !
  8. V.R.T.

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

    Do you mean in people who use it off label for ME if ResetME is successful? I think that would be really important.
  9. V.R.T.

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

    I think you're right. And Scheibenbogens CD38 study (ixa something) should provide parallel evidence if that goes ahead.
  10. V.R.T.

    Solve M.E. What's New in ME/CFS? Interview with Dr. Chris Ponting

    I believe I was talking about the German government's new initiative- I am confused about whether MECFS Research Foundation are involved with that actually. But yes, they could be a candidate. I thought their recent call for drug trials applications looked fairly reasonable e.g. anti CD38, T...
  11. V.R.T.

    Solve M.E. What's New in ME/CFS? Interview with Dr. Chris Ponting

    This is something I really dont understand. Surely all that zebrafish modelling drug discovery stuff will be 1000x more useful if SequenceME gives us a glimpse of the mechnism behind ME/CFS. I really hope that they and the ME Association step up and do the right thing if called upon.
  12. V.R.T.

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

    Something ive been thinking about - this is listed as a phase 2/3 trial. Do you think F&M might concievably enroll more patients than the planned 66 if they secure enough funding? And if yes, is this something that would be desirable?
  13. V.R.T.

    Solve M.E. What's New in ME/CFS? Interview with Dr. Chris Ponting

    This was an interesting and fairly hopeful interview. When asked what he'd do with double the funding, Chris spoke instead about what he'd do with the 20million for SequenceME instead, or rather, the benefits it could bring. It made me more angry than ever with the MRC, and made me think about...
  14. V.R.T.

    Long Covid Doctor, Dr Tim Robinson, South west UK

    Calling some kind of BPS rehab program 'hope' is so sick. The false hope the psychobehavioural approach sells put me in this bed, and did the same to countless others. Just had a look and this looks like patronising nonsense to me. With a side of stealth GET no doubt.
  15. V.R.T.

    What research do you want to see? (study ideas)

    Does anyone know of any autopsy studies currently recruiting in the UK?
  16. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Yes the more severe I have become the worse my emotional dysregulation has become, but it was there from the start. Two months after I became severe I stupidly walked around a hospital. I thought it was about a fifty metre walk but it was hundreds. When I crashed I felt a fizzing sensation in...
  17. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Quite a few things on there track with my experiences, especially the emotional fluctuations I have experienced since becoming severe. Edit: I hope this isn't confirmed to be causing it, because it's an extremely unpleasant symptom.
  18. V.R.T.

    Peripheral Levels of Selected Biomarkers in Patients with Post-Sarcoidosis Chronic Fatigue Syndrome, 2025, Małujło-Balcerska et al

    There was an IL-6 finding and drug study in Long Covid was there not? The drug was called something like Tocilzumab...
  19. V.R.T.

    The bone marrow NK-cell profile predicts MRD negativity in patients with multiple myeloma treated with daratumumab-based therapy, Korst et al. 2025

    I am not a doctor or scientist, but if ME/CFS is caused by some sort of immune system signalling loop, couldn't taking something like this potentially make it worse? Iirc the rationale for this drug is viral persistance based.
  20. 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've decided not to do it until phase 2 is out or shortly before, for the sake of my sanity. As Utsikt says, we dont know if they are relevant or why yet either. And if F&M don't test anymore low NK people in a case study before phase 2, we might not know for a while.
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