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  1. Jonathan Edwards

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

    It might seem off topic but it follows through an argument directly relevant to the action of anti-CD38 used in the trial. I think it is a pity if these subsidiary discussions need to be in separate threads. When I had group lab meetings we might spend half an hour on discussing some background...
  2. Jonathan Edwards

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

    Is it? I thought anti-CD38 was just being used as a means to deplete antibody producing cells?
  3. Jonathan Edwards

    Should research teams include some engineers?

    I think the answer is that to get anywhere working out disease processes you need an intuitive understanding of complex dynamics. I am not sure that teaching systems theory can ever provide this. UCL set up a Systems Biology centre which I was invited to join. It was all jargon from people with...
  4. Jonathan Edwards

    United Kingdom: Sussex & Kent ME/CFS Society News

    I look forward to your assistance @Nightsong
  5. Jonathan Edwards

    Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders, 2025, Lidbury et al

    Laminins are part of capillary wall structure - including 'basement membrane'. Their variety suggests that they are also local signpost molecules used to make vessels in different tissues seem different to migrating white cells, either directly or indirectly. They might be crucial to what cells...
  6. Jonathan Edwards

    Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders, 2025, Lidbury et al

    At some point in the fairly near future I hope it will be useful to have a serious brainstorm on all the risk gene data available. I would limit that to risk gens rather than expression studies at first although the expression studied are obviously of interest to any ideas from the genes. I...
  7. Jonathan Edwards

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

    No need to apologize. The discussion clarifies things. Psychiatric services are bad in a way that they are not for motor neurons disease etc. MECFS services are uniquely bad in certain ways - that is a very valid point. This is another thing I need to address for my medical professional...
  8. Jonathan Edwards

    United Kingdom: Sussex & Kent ME/CFS Society News

    That is the nub. I am hoping to produce a draft for a factsheet designed for medical professionals over the next week. I think i need to include clear counterarguments to things like the above, use of terms like functional and medically unexplained and the BSG nonsense on feeding. Hopefully...
  9. Jonathan Edwards

    AI-driven multi-omics modeling of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, 2025, Xiong et al.

    I end up thinking it says: "we didn't find much but we might have found this and if we had found that it would probably have been that way"
  10. Jonathan Edwards

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

    It's a good idea @hotblack . Suffolkres has been trying to achieve this for a decade or so and been frustrated but now, or quite soon, may be the time to have a more concerted effort. One thing that seems to have come to the fore is the lack of insight into the medical logistics of some of the...
  11. Jonathan Edwards

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

    IgG4 does not bind to IgGFc receptors via its Fc but it can bind to any sort of receptor (for any other protein) via its Fab antigen binding end.
  12. Jonathan Edwards

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

    Three things I would note there @jaded . I got referred people with all sorts of diseases when I was developing rituxmab treatment and had to say no simply because I didn't have enough information to justify treatment in a special context. This isn't about treating one off cases but about...
  13. Jonathan Edwards

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

    Immunofluorescence assays like the pictures shown have been the gold standard for pathogenic autoantibodies. They correlate robustly if not universally with diseases we know to be antibody driven. Some would say you need to stain live cells but I don't think that is necessary. Functional assays...
  14. Jonathan Edwards

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

    We have discussed research and care. Maybe the elephant in the room that the plan gets most wrong is education. If Emperor Constantine wanted to convert his Romans to Christianity he would not have produced baby Jesus learning modules for novices in temple schools. He would have told the High...
  15. Jonathan Edwards

    AI-driven multi-omics modeling of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, 2025, Xiong et al.

    I can't follow much of this sort of spin but they seem to be saying MAIT and gamna delta T cells are making IFN-G. Suits me and Jackie Cliff fine I would say. I doubt your, actual "gut flora' matters that much.
  16. Jonathan Edwards

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

    I see that argument @hotblack. I have been running it through my mind. It makes sense but my fear is based on the trials suffolkres has had in Suffolk. The plan says there should be services. Those have to be put out to tender. The bidders will need to submit PROMS- type result sheets showing...
  17. Jonathan Edwards

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Thanks for that. The paper wasn't really about cellular metabolism, tissue resident immune populations or specific self antigens but at least it seems to have been enjoyable!
  18. Jonathan Edwards

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    I pointed out to Paul Garner in my email that Hilda Bastian seemed to get it. A good comment.
  19. Jonathan Edwards

    News from Austria and Switzerland

    That sounds a bit like the UK plan. I wonder what truly relevant care facilities in specialized centre's would be.
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