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  1. hotblack

    Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

    This would seem a straightforward way of finding out if it is NK cell count or some other factor that is important here. Limit the variables, use the same patients.
  2. hotblack

    Do you use a hidden disabilities sunflower lanyard?

    I don’t as I can’t get out anymore. But probably would if I could. The difference in people’s responses to someone who looks young and healthy but isn’t and someone who is older and looks frail but is fine is telling. People aren’t uncaring, I think, they just don’t know. How much the symbol is...
  3. hotblack

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

    Thanks for the update @Utsikt It’s a shame they weren’t clearer over the funding, but who knows what uncertainties there have been behind the scenes and well, it’s fantastic they look likely to get all that is needed.
  4. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    A bit more background on this can be found in this write-up, some quotes below
  5. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    If you’d like to give a detailed explanation of what the mechanism is and why there is proof beyond doubt please do, I’m all for hearing it. I’m comfortable that I’m coming at all this from a place of ignorance and lack of experience, and find questions are a good way to learn.
  6. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Presumably this balance matters even for a particular cell type, like in the theory here? It’s not just ‘cell with this receptor gets killed’ it’s a probabilistic thing depending upon receptor makeup, how much daratumumab binds and other factors on deciding if a cell is killed? Separately to...
  7. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    I’m a bit late to some of the detail of this paper but some questions I had which seem relevant to the current discussion When is the assumption made that ADCC and NK is important (Daratumumab seems to have other mechanisms of action)? Why is there an assumption of autoantibodies being...
  8. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Ah, yes, I couldn’t find that either. It says there’s an example in the supplementary materials but I can’t see it, only the results (in Table 1.xslx)
  9. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    They used SF-36 Physical Function (SF-36 PF) and DePaul Questionnaire-Short Form (DSQ-SF). Is that what you need? Edit: was just about to post a better link but @Utsikt got there with the relevant text.
  10. hotblack

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

    Got you. Sorry I’d misunderstood and assumed you meant before study completion and unblinding. My mistake and crossed wires with other posts. On recruitment, is it that or funding that would be the limiting factor here I wonder? I guess it’s difficult to know for sure.
  11. hotblack

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

    How? This is in the study design (linked from the english fundraising page) It’s great there’s so much interest, hope and positivity about this trial. I know it’s hard but we should try to base discussion in what is known about the trial.
  12. hotblack

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

    Yeah, I think we’ve discussed this before, but getting appropriate basic support in place should be our focus I think. That’s not only badly needed but everything else including trials or treatments depends upon or builds on that. Yeah I’ve heard that can happen too, but what looks like the...
  13. hotblack

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

    I’m not sure how we would know it’s a success until the trial is complete and unblinding occurs.
  14. hotblack

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

    It looks like length of this study is 72 weeks per person, with staggered involvement (not everyone starting or finishing at the same time) and recruitment open from 06.06.2025 until 01.12.2026. So I wouldn’t expect results until later into 2028 at the earliest.
  15. hotblack

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

    One of the documents attached to the english fund-raising page talks a lot about the mechanism and goal being reduction of autoantibodies, my understanding was this was not the case and it’s some other mechanism involving B cells/plasma cells, potentially antibodies but more autoimmune adjacent...
  16. hotblack

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

    That was the misunderstanding I thought it was important to correct, so people reading this don’t jump to conclusions. This all off a bit of a side topic and speculation, we just don’t know the reasons for Fluge and Mella making this patent claim. It may be useful to, but we don’t. The points...
  17. hotblack

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

    That isn’t always the case. There are other reasons. You could even patent something and give it away, to ensure nobody else patents it and charges or even withholds it. Not saying that is the case here. Just that we don’t know the reasons. It would be good to of course.
  18. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    This all sounds really really interesting. Hope you get the funding and look forward to hearing how the experiments go. The wait should give me some more time to read up so I can understand what any results mean!
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