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  1. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I am actually really relieved to hear things are progressing, even if segmentally. Hopefully we hear more soon.
  2. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Yes I assume Chris and Sonya have already explored this avenue. Hopefully with some success. But if they haven't they really should.
  3. V.R.T.

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    @Jonathan Edwards did you learn anything about the SequenceME funding situation from your recent meeting with Sonya?
  4. V.R.T.

    Genetics: BTN2A2 and BTN3A3

    Is anyone in the PRIME network well positioned to look into this locus?
  5. V.R.T.

    Genome-wide association study of major anxiety disorders in [Europeans] identifies 58 loci and highlights GABAergic signaling, 2026, Strom+

    Seems he's retired - he's listed as emeritus professior here: https://www.trophoblast.cam.ac.uk/people/john-trowsdale Perhaps he or your old colleague might know who's still in the field working on this stuff who might be a good candidate?
  6. V.R.T.

    Genome-wide association study of major anxiety disorders in [Europeans] identifies 58 loci and highlights GABAergic signaling, 2026, Strom+

    As someone who had depression and intense 'anxiety' (DPDR, panic attacks, akathesia) since late teens, I see a lot of people on the long covid subreddit who have my pre full ME onset symptoms after a covid infection (including horrendous hangovers after drinking alcohol and cannabis...
  7. V.R.T.

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

    I have just seen I asked this a month and a half ago. Earlier I went on the BTN2A2 thread to ask if there were any experts in that we could get involved in research and found I'd asked that last month:banghead: MECFS brain fog is kind of funny, kind of scary.
  8. V.R.T.

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

    Just been rereading this thread - is it likely they will publish preliminary results? I thought they wanted to keep the blinding for 72 weeks? I suppose they could unblind the clinicians and not the patients initially - is that ever done?
  9. V.R.T.

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

    Anyone know if we're likely to see the James PET tracer paper before the Charite conference?
  10. V.R.T.

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    How can the lay public sort it out? It's funny, so many people have horrendous stories of mistreatment by doctors but they still want to believe there is nothing wrong with the system these doctors belong to.
  11. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Ten years is an insanely long time. PwME, especially severe, die all the time sadly. Just this week there have been something like 4 deaths reported. Why can't they do this faster considering how important this finding seems? I think we need better systems for posthumous donation for pwME. I...
  12. V.R.T.

    STIMULATE-ICP: [...] Phase III, open label, adaptive platform randomised drug trial in [LC]: [Protocol], 2023, Forshaw et al

    Do you know if this was the same for the other drugs they tested?
  13. V.R.T.

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    A concerning thought. I've just checked and apparently microglia can regenerate so hopefully this is potentially reversible if it's true. https://pmc.ncbi.nlm.nih.gov/articles/PMC5540680/ However it says they renew at 28% per year so if this were the cause of severe MECFS it wouldn't account...
  14. V.R.T.

    United Kingdom: ME Association news

    That's a little concerning...
  15. V.R.T.

    Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion in Long COVID with ME/CFS, 2026, Elahi et al

    Which other studies have found upregulated FOXP3? I know they exist but can't find them on here or remember which they were.
  16. V.R.T.

    Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion in Long COVID with ME/CFS, 2026, Elahi et al

    I knew I'd seen galectin-9 somewhere before! This lot seem like pretty serious researchers. Interesting that they found dysregulated B cell and platelet signatures and FOXP3 upregulation in vanilla MECFS. What does this actually mean though? the parts about activation and exhaustion are vague...
  17. V.R.T.

    United Kingdom: ME Association news

    Excellent news, thank you. Do you know what potential biomarkers they are looking at?
  18. 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

    There is evidence that people with MECFS sometimes improve a little or a lot. It is not the norm but it is common enough, especially early on. This is probably why so many people think they recovered from brain retraining and stuff. The odds of 6/10 patient with MECFS as we understand it...
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