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  1. Jonathan Edwards

    Review From Viral Infection to Autoimmune Reaction: Exploring the Link between Human Herpesvirus 6 and Autoimmune Diseases, 2024, Sokolovska

    Yes but studies have implicated everything in everything. This looks like a PhD student essay with a few senior names on it. The abstract says nothing of interest so I am not going to read further I am afraid.
  2. Jonathan Edwards

    Open UK: People with severe ME needed for HHV-6 study (can be done from home)

    I am not sure where it is written but CureME defined categories for the ME Biobank. Caroline Kingdom, who I central to this, visits people who are bed bound. I think they have a very severe category too. It might be in an original ME Biobank paper.
  3. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I presume there was no jump. They had concluded that before they started and just used the few bits of data that could support it to go on concluding that. That is the way 90% of science labs work.
  4. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I wouldn't ask them to follow up on anything. I would encourage the NIH to put money into groups with new ideas. They have done so in the past, including CureME. They should do so again.
  5. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I seem to make a habit of being misreadable! I have meant to do something about it but my effort preference is all screwed up.
  6. Jonathan Edwards

    Tom Kindlon - ME/CFS Advocate

    Shit. With THAT list of supporters a 'no' has to have meant it was never going to be allowed. I was made Professor on about a twentieth of that support. I would recommend Tom to follow the example of our good friend Professor Norman Leighton, Professor Emeritus of Ancient and Modern History...
  7. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    It is true that just working in a lab on anything often starts off observations that become important. But the vast majority of the time this sort of strategy just leads to some poor PhD student spending five years feeling they have to repeat some duff results and either faking something to...
  8. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I meant that maybe you too were led in by the patients, David! That might also be wrong of course.
  9. Jonathan Edwards

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    A very neat sentence. The whole thing is very well written and balanced to my mind. Nothing over egged. But agreement from Cochrane is something of a cherry on the cake
  10. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I am quite sure that the patients are leading. DecodeME came about largely through the efforts of a member here and is co-run by a member. The overturn of UK NICE guidelines came from Shepherd, Kindlon, Matthees, all patients. I am only here because carers got me involved and maybe David T...
  11. Jonathan Edwards

    CAR-T therapy

    Interesting. My thought would be that getting a bispecific or trispecific CAR-T to work using antigen specific ligands could require a whole developmental story in its own right. Availability could be crucial. There is also the tricky problem of epitope complementarity. In order to generate an...
  12. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    OK, but my main contribution to medical science has been the deduction that for autoimmune disease there is no 'culprit' after all, just complex dysregulation. Twenty years later hundreds of thousands of people with about thirty diseases have been successfully treated based on our proof of...
  13. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    The criticism of the psychological interpretation is good but we need to be critical of the mix of data and interpretation in the immunology just as much. I am probably wrong but so far the main T cell finding seems to be mislabelled in the figure.
  14. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    If the larger discussion is more biology, fine. But as Trish points out vanElzakker has friends in persistent virus money gathering. And as Lucibee pointed out, our pragmatism needs to be pointing in the right direction. Encouraging people to go back to the never-ending search for viruses and...
  15. Jonathan Edwards

    CAR-T therapy

    I was at Grand Rounds at UCL yesterday. We talked about CAR-T for scleroderma. Everything is looking rather encouraging partly because Car-T may deplete more but also because of the option of killing B cells specific for certain antigens. That is unlikely to work for rheumatoid but it could work...
  16. Jonathan Edwards

    CAR-T therapy

    Sure, I may not have made that clear. We know that rituximab produces a rapid fall in some autoantibodies and not others. That suggests that cutting off supply of new B cells leads to drop in antibody levels because they are produced by relatively short lived plasma cells. For other...
  17. Jonathan Edwards

    Functional neurological signs in hypermobile Ehlers–Danlos syndrome and hypermobile spectrum disorders with suspected neuropathic pain 2024 Fernandez+

    Seems a bit like collecting non-fungible tokens. The more non-existent biopsychosocial diagnoses and corresponding unproven therapies you collect from visiting doctors the more likely you are to collect even more from other doctors.
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