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  1. hotblack

    Bayer First Company to Advance Cell Therapy as Well as Gene Therapy Against Parkinson’s Disease

    I first heard about this in a paywalled reuters article More info in this press release from a few days ago Source - Yahoo Finance There’s also a nature article from earlier in he year but it’s also paywalled. And some older items from the company website on this technology. Bayer - Cell...
  2. hotblack

    New "Jesse's" GP rule of 3 visits

    That sadly sounds like the best approach for anyone that can.
  3. hotblack

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

    True :) And I really like the constructive attitude you’re describing and are approaching this with. At the same time I’d hate for anyone to get their hopes up and end up being disappointed if things just take as long as they have said it will take. So just wanted to drop that in here. I’ll be...
  4. hotblack

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

    Doing this properly is essential. I get everyone’s desire for speed, I really do, I want (need) results and treatments ASAP. But most important is that they do this right. This team have trust from people because they know what they’re doing and do things properly. They have set a timetable...
  5. hotblack

    [uniQure] Positive Topline Results from Phase I/II Study of AMT-130 in Patients with Huntington’s Disease

    I just heard about this via the BBC article, impressive stuff. Imagine if they could combine things like this with the developments to enable large molecule therapeutics to cross the blood brain barrier.
  6. hotblack

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

    BIOS-Flash-ME would fit with the basic input and output systems being screwy and needing to be fixed
  7. hotblack

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    I found this site useful with reviews of noise cancelling including of the QC Ultras
  8. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Do you mean because it’s a part of a subset of the immunoglobulin family it pops up or is there some other reason or link? I’d completely forgotten about the HLA-DQ find.
  9. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Not sure if this has been explicitly asked, but does the lack of MHC appearing to be significant in DecodeME results increase the likelihood of whatever is going on being MHC-independent. In other words, should we be looking more at something involving gamma delta T cells, MAIT cells, NK cells...
  10. 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.
  11. 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...
  12. 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.
  13. 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
  14. 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.
  15. 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...
  16. 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...
  17. 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)
  18. 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.
  19. 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.
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