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  1. V.R.T.

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

    They used a higher dose in the pilot, and in the phase 2 they will use that same higher dose. The lower dose was given to 5 patients recently - 4 long covid patient and one person from the pilot who had relapsed iirc.
  2. V.R.T.

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

    There's one that was retreated with a lower dose recently after partially relapsing and this person improved a bit but it didn't last as long (they think cos of the lower dose). Iirc I think they're retreating others with the full dose so perhaps they've partially relapsed too.
  3. V.R.T.

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

    Do you know this from social media posts? I haven't heard anything since the video that was put out for that fundraiser last year.
  4. V.R.T.

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    It breaks my heart, honestly. I tried so hard. My partner did too, as did several friends who deteriorated from exercise. People who wanted to get better and work full time and live full lives. I would give anything now for the life of mild ME I tried to escape. And it was quite shit in the...
  5. V.R.T.

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    The extreme injustice in the fact that those of us who 'try to get better' in the way they would want often end up the sickest and thus as the biggest recipients of their disdain and neglect will never cease to make my head spin.
  6. V.R.T.

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    This makes me want to be sick.
  7. V.R.T.

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    So perhaps the IFN-y itself would have to be targeted in this hypothetical situation? Are there drugs that do that?
  8. V.R.T.

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    So does this paper suggest that if IFN-y is driving MECFS, JAK-STAT inhibitors might work to break the signalling loop?
  9. V.R.T.

    Miscellaneous Research Thread

    To be clear, I wasn't claiming it is a deliberately engineered virus that was made as a bioweapon or whatever. I think it's possible it was something being messed around with in a lab by virologists engaged in gain of function research that escaped because of lax safety precautions. Those are...
  10. V.R.T.

    Miscellaneous Research Thread

    Ok. I'm not a scientist. It does spread incredibly fast though.
  11. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Yeah, as I said above, it's a good sign they've announced this, as it would be very strange to anounce the start of a project this large if you thought there was no hope of securing the funding needed to actually do the study.
  12. V.R.T.

    Miscellaneous Research Thread

    I don't covid is a bioweapon or anything mad like that but I've seen a good amount of evidence over the years (I think there was a good article by Nicolson Baker and one by The Intercept but it was ages ago) it could well be a product of gain of function research, and I think that lab had been...
  13. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    That's great to hear! Now there's just the small matter of finding the bloody funds!
  14. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Yes it's absolutely unforgivable. I can't even put into words how angry it makes me. And this project could have been a flagship program - as Chris Ponting says, it hasn't been done for any disease. It makes me sick that the MRC are so disdainful of ME/CFS they couldn't see the chance to blaze a...
  15. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    So if the team got funding to analyse the DecodeME samples next week they would get started on it then? (Obviously being a bit hyperbolic here, the point is whether they will wait the full two years to start if they get funding to analyse the DecodeME samples)
  16. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Glad they've got funding to start but this is a very daunting gap in how much they need for the whole thing. I guess they wouldn't start if they didn't think it was realistic that more funding will be secured? Are they saying that once they get further funding they will immediately start work...
  17. V.R.T.

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    Unless those are from asymptomatic infections. Or so mild people put them down to allergies or a hangover or whatever.
  18. V.R.T.

    ME/CFS services in the United Kingdom

    I don't think it is a goal but considering the stats on the amount of people who have ASPD in medicine and psychiatry and the disingenuous arguments the BPS people use e.g. about Maeve Boothby O Neills death, I think its likely that some of these people know they are causing harm to us and do...
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