Search results

  1. 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.
  2. 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...
  3. 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.
  4. 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.
  5. 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...
  6. 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...
  7. 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.
  8. 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!
  9. hotblack

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

    Ohhh, I need to go back through some posts then. Quite likely I read something and it lurked somewhere until it made sense with ither things I’ve been reading! Sure, I will try to post some wild speculations at some point. It’s all vey high level and hand wavey stuff, it’s impossible not to see...
  10. hotblack

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

    Yes, I was less expecting answers as throwing thoughts and questions out there. I’m doing a phase of learning things again and the potential possible connections seem… extensive.
  11. hotblack

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

    If this is the case are we looking at Immature or Transitional B Cells? https://en.m.wikipedia.org/wiki/Transitional_B_cell I also read that CD38 can influence intracellular calcium levels. In the linked thread on the paper there was discussion of energy production, but what about implications...
  12. hotblack

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

    Imagree with @Utsikt on all points. I would add that while SequenceME is going to happen or not based upon government funding they may well need funds now to be able to work on the bid for those funds. Difficult to be sure. But the Dara Phase 2 does seem to be the one more dependent on...
  13. hotblack

    Mental work seems to lead to sound sensitivity and poor sleep

    Yep, managed to borrow a laptop and did some stuff recently. Not for long but enough. Now noise is all sharp and jarring and sleep worse. Feel overstimulated. Tinnitus worse. Etc Always the same, just exactly where the line is varies, sometimes a few words with someone will do it, sometimes I...
  14. hotblack

    Open (International) Survey: Can we reach consensus on an ME research case definition?

    There’s always an xkcd cartoon! I’ve started to go through now and am also a bit unclear on the value. @Andy makes a great point, it’s been shown that criteria are not a barrier to good research. Other things like rigour, scale and funding may well be. It seems this has been supported with a...
  15. hotblack

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I know what you mean, but needs to be done with much more distance. I know I would have said more positive things after unpleasant experiences and outcomes from specialist services simply because someone was doing something. And probably out of a need to justify to myself the worth of what I was...
  16. hotblack

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    One more point, an obvious one but it seems important to reiterate for this when talking about looking at effectiveness or safety of clinics. If dealing with subjective outcomes where the subject is open to being influenced by someone who has motivation for a particular outcome, the outcomes...
  17. hotblack

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I started to write a post but realised I’ve already largely covered the two things I think we need to measure and why I think this achieves neither. We’ve discussed patient led measures of outcomes and things like FUNCAP which could be used to measure effectiveness of treatments in other...
  18. hotblack

    Thesis Characterising the Electrophysiological Properties of Cells in Health and Disease [on ME/CFS], 2024, Clarke

    My understanding was the original Davis test was just about impedance in white blood cells while the work here expanded the approach to look at a range of cell properties and found an ability to differentiate using ionic content in the cytoplasm, ion transport through and across the surface of...
Back
Top Bottom