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  1. Sasha

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

    Doesn't mean that they weren't having interested colleagues getting involved. Maybe not, but we don't know. Depends who they already know, who could be shuffled around in the hospital, and how you define 'now'. You can have all three if you have a ton of money and the right connections. I'd...
  2. Sasha

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

    Maybe, but maybe not. Fluge and Mella have been doing ME/CFS trials for years now and I'd have thought they might have brought some other clinicians on board by now. We do need a robust study but if extra money would help hire in personnel (even trial managers rather than clinicians) to speed...
  3. Sasha

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

    Sorry if this has already been answered on this very long thread but now that we know ResetME has 300 potential participants banging on the door for 66 places, with some patients already enrolled and getting dosed up this week, can we assume that the last patient should be starting loads earlier...
  4. Sasha

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

    Am I right in thinking that the patients are being selected on the basis of having NK cell counts at baseline that would put them in the same bracket as the responders in the pilot trial (where the non-responders had lower levels)? So we might expect a higher response rate than 60%?
  5. Sasha

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

    I think this is a brilliant title! We all want to be reset, and dara is looking in the pilot trial like a drug that doesn't just make you a big better but that actually tackles something at the core of ME/CFS and resets you to factory settings. Genius name.
  6. Sasha

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

    That's great news about recruitment. I was worried that that was going to be another limiting factor.
  7. Sasha

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    This is an amazing reversal of fortune from where I thought we were! I thought we were looking at the trial eventually failing or taking forever while we all lay suffering on our beds/sofas. I hope this massive influx of cash means that the trial can speed up! Would be great to have a timeline...
  8. Sasha

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

    There was a reply to this particular question. I'm afraid I've also got a bit lost with the multiple threads now!
  9. Sasha

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    Wow, that's 'only' £410,000! I'm struggling to believe things have changed so quickly, though. Does anyone who is in correspondence with Haukeland fancy checking?
  10. Sasha

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

    ChatGPT doesn't have to say it out loud! It's like Terry Pratchett's Nanny Ogg saying 'banananana'.
  11. Sasha

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

    I really hope that's the worst-case scenario! I wonder what the rate-limiting factor is - money, or recruitment?
  12. Sasha

    Daratumumab, isatuximab (CD38 drugs)

    That's odd - I'd thought that the failure of rituximab (a CD20-depleter) would have meant not bothering with other CD20-depleters.
  13. Sasha

    Daratumumab, isatuximab (CD38 drugs)

    Any sense of whether that's for a pilot trial or a full trial, and when it might be ready to go? Would isatux be expected to be better/safer than dara? I'm trying to work out where this trial lies on the 'good news' scale and whether an isatux trial already being funded means that funding the...
  14. Sasha

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

    I'm just reading the published paper on the pilot study, which had 10 moderate-to-severe PwME, and it says that recruitment lasted from June 2022 to December 2023. That's 18 months to recruit 10 people! And now they need 66! Any sense of how recruitment is going? It would be awful if slow...
  15. Sasha

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

    This is like a more consequential and hellish version of Netflix, where you watch a really great series and then realise that Season 2 won't come out for two more years.
  16. Sasha

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

    But as I understand it, early stopping is normal in trials if they bust through the evidence barrier big-time and early - ethically, they must stop. This is not a special case. It's standard. There would be no reason for the NHS to turn its nose up - it would be business as usual and the results...
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