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  1. V.R.T.

    Genetics: Chromosome 6 HLA-DQA*05:01

    I just found this on the HLA DQ wiki page - T Cells and graft vs host mentioned as well as autoimmunity. Seems potentially relevant if accurate. https://en.m.wikipedia.org/wiki/HLA-DQ The DQA1 page is interesting as well...
  2. V.R.T.

    Genetics: Chromosome 6 BTN2A2 and BTN3A3

    So you're saying this gene could potentially be more useful/relevant than the kind of HLA link that turned out to be a mirage? That's encouraging. I was a little concerned your pre DecodeME enthusiasm might have been heavily weighted by that HLA skyscraper. BTN2A2 does seem like it could fit...
  3. V.R.T.

    News from the USA, United States of America

    This seems like such a no brainer to me, I feel like any organisation serious about helping pwME/LC with NIH or even MRC/NIHR levels of resources would do this as a first port of call. Like 'obviously fast track Dara, and what else can we do?' And yet they're pissing around with GLP-1 and LDN...
  4. V.R.T.

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

    If you have the capacity to expand on this at all I'd be really interested to hear about it.
  5. V.R.T.

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    That's disappointing! Here is an article about T cell tracers - it seems from the table in the article there are a lot that are preclinical and a CD8 one that is listed as clinical/pre clinical. https://jnm.snmjournals.org/content/63/2/183
  6. V.R.T.

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

    I think you make some good points. Daratumumab could be our golden ticket but I remember (other spaces) getting hyped for ampligen, temelimab, efgartigimod, BC007 etc. It does look like the most promising of the 'happenstance' based treatments I've seen in the five years I've been paying...
  7. V.R.T.

    Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

    Asking this again incase it was missed. Aware the scans didn't show lymph as we originally thought but could the technology be useful even so?
  8. V.R.T.

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

    Well, I used to absolutely hoard books in my postgrad days and also have a stash of graphic novels that might fetch a little bit of money. They are taking up space at my parents' house currently (which might be why they agreed to help!) I can barely ever read paper books now, which sucks. But I...
  9. V.R.T.

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

    I am planning to sell off a good amount of my musical instruments and gear, as well as a lot of my books (I have far too many books) and donate the proceeds to ME/CFS research. I was thinking of donating the proceeds to the AfME/Edinburgh fund, but the daratumumab phase 2 funding situation has...
  10. V.R.T.

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

    I would really like to know if F&M have secured any more large donor funding. Do you think it will be announced if/when they do? Or only when the trial is fully funded if we get to that point.
  11. V.R.T.

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

    I can't tell if this is a joke I've missed but if it isn't- what kind of name and to what end? Like an all caps acronym name like e.g. REJUVINATE?
  12. V.R.T.

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

    Oh dear, I made a mistake in my letter. I attributed the project matt video to the ME fund. No reply so far. Hope that wasn't a factor. I would be uncomfortable with a fundraising campaign promoting a trial using that sort of video without also putting forward serious caveats that the video...
  13. V.R.T.

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

    Ah too late, I sent it off this afternoon! No reply so far. I've donated a couple of times myself and will encourage family to donate in the next few days.
  14. V.R.T.

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

    The email is half drafted but I've been rather crashed this weekend so it's going to take a little longer unfortunately.
  15. V.R.T.

    Why don't doctors trust women? Because they don't know much about us

    Replying to a post saying that when a disabled woman experiences bias it’s the bias against disability compounded with bias against women: I want to point out that this discussion morphed into one about the experiences men and women have with chronic illness before I posted in the thread. So...
  16. V.R.T.

    Why the BPS people think the way they do

    This is precisely the technique that was used on me. Ironically, the psychological fallout of realising that I fell for it and it destroyed my life has made my mental health worse than it ever was before. And it was pretty bad before!
  17. V.R.T.

    Why don't doctors trust women? Because they don't know much about us

    Responding to a deleted post: I entirely accept that there are specific ways in which women have it worse, and that there are different dynamics for women who are chronically ill. However, there are specfic dynamics to how the expectation and performance of masculinity play out among men that...
  18. V.R.T.

    Why don't doctors trust women? Because they don't know much about us

    While I don't want to diminish anything that women go through, my experience has been that the minute you express what doctors consider undue concern about your health, or suffer from an affliction they cannot immediately diagnose, you lose a good proportion of whatever privilege being a man...
  19. V.R.T.

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

    I've just seen this comment. Apologies for making you explain again in the other thread! What is it about the immunology that makes the responses look real?
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