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  1. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    That is encouraging but B cell survival in vitro is so temperamental that it would be easy to get an artifactual difference. You would really want to process samples blind at least as control-matched pairs and not break the blinding until you had a complete study.
  2. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    I think that study could be very useful. So far we have one or two isolated cases of dorsal root ganglion changes that might have been by chance or artefact. Any further findings in any of a sample of five cases would be important.
  3. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    It might be quite hard to detect. If the inflammation consisted only of diffuse lymphocyte infiltration without oedema MRI might not show much. If symptoms were caused by antibodies in the CSF rather than the ganglionitis itself - which might just be a bystander effect - then there might be...
  4. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    Note that to get MS you pretty much have to have certain genetic variant risk factors. That might mean that AWOL B cells can only colonise brain in a tiny proportion of people whether or not infected with EBV. That means that for the other 95% of us the only way B cells could get into CNS might...
  5. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    I think this is the Post-Covid PASC study but still interesting. We have no evidence of focal demyelination lesions like MS in ME/CFS or PASC so it seems unlikely that B cells are getting in to brain through brain parenchyma. However, maybe it is possible for something analogous to occur across...
  6. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    Interestingly, there is another possible explanation - that a B cell committed to making antibodies to EBV cannot support its own EBV infection (because it would be full of anti-EBV antibody). So EBV could expand clones recognising other microbes but not EBV. The anti-EBV clones would go on...
  7. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    Or maybe stop more going in. Rituximab probably does that and if you gave it often enough to keep B cells out of the blood you might prevent any further episodes. The problem is with the fall in immunoglobulin levels and lack of antibody response to infection. The hard question is why there...
  8. Jonathan Edwards

    United Kingdom: ME Association news

    This is a big problem. Charles put a huge amount of effort into making the new NICE Guideline a reality. Now it seems that the MEA is happy to accept a situation in which the Guideline is becoming increasingly meaningless. There are no services worthy of the name as far as I can see.
  9. Jonathan Edwards

    Review Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

    Would that be the water around the Norwegians when they jump in a freezing lake after a sauna - or is that the Finns? I have always thought you would need to be hypnotised to try that. I don't mind the flagellation with birch twigs so much.
  10. Jonathan Edwards

    Ampligen for ME/CFS

    I have never seen anything immunologically credible about Ampligen. It has always looked like something based on garbled pseudoscience. I never cease to be amazed at the way people will treat medical research just as a casino.
  11. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    One thing that may be relevant is the suggestion that Hemsley was thinking in terms of a private contracted service for feeding support outside the NHS. But I cannot see how that is going to happen. The reference to 'bespoke plans' going outside policy seems pretty peculiar. If you are...
  12. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    So it is not just me confused it seems. It looks as if this recent document is it. But then Hemsley's reply is also pretty vague and makes no reference to feeding support (or nothing specific). Nothing in either addresses the lack of support for very severe cases. And yet Hemsley was supposed...
  13. Jonathan Edwards

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    This finding is very interesting and very consistent with the way I have always looked at MS - not as a cross-reactive disease but as a failure of the normal general barrier to B cell entry to CNS. EBV could have been relevant to MS because of B cells recognising EBV but this study gives the...
  14. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    My sense is that the only way to get it across is to point out in the same document that people like Maeve die if it isn't sorted.
  15. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    I am not very well placed to start a thread just at the moment, with other things in the in-tray. What I think needs a decision is the scope of this. If it is just advice on how to minimise problems for people with ME/CFS when they come in to hospital for any reason then NICE probably covers...
  16. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    I agree. I have obviously put some thoughts into Qeios articles with a different purpose and format but I think it would be a nice idea to try to produce a succinct proposal for hospital needs from the forum. As much as anything it needs to be free of all the usual professional platitudes that...
  17. Jonathan Edwards

    News from the USA, United States of America

    A pity that University press releases mangle the science so much. What on earth are 'genomic hitch-hikers'? They seem to have missed that there are a whole family of interferons, not just variants thereof. When I was about five years old our closest family friends were the Isaacs family and...
  18. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Yes, I get the impression, although he says things in a roundabout way, that he wants a causal concept and maybe would prefer ME. One thing that I think may confuse is that I have acknowledged that including 'ME' is in part a concession to patients' preference. I also mention the important...
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