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  1. Jonathan Edwards

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    From the posts above, this continues to sound underwhelming, especially: I think there is a much more plausible explanation for anti-ACE2 antibodies. Anti-idiotype antibodies can be made against monoclonal therapeutic antibodies but the evidence for them being made to natural polyclonal...
  2. Jonathan Edwards

    Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders, 2021, Eijsbout

    I am not sure what you are meaning here and the analogy with allergy does not seem quite relevant. What are being looked for are gene variants. If these gene variants are more common in people with anxiety and people with anxiety are more likely to report IBS then any apparent link between the...
  3. Jonathan Edwards

    Human to human lyme transmission paper sought

    Countless investigations were carried out with DualDur, while carefully observing and recording clinical symptoms, and performing 110,000 serological tests to back up the diagnosis. That sounds like money talking, not a scientific lab. There are no publications on PubMed mentioning DualDur in...
  4. Jonathan Edwards

    Human to human lyme transmission paper sought

    That looks like the dark field approach that has come in for criticism. The webpage is not very encouraging.
  5. Jonathan Edwards

    Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders, 2021, Eijsbout

    It looks as if the UK Biobank data replicated findings from 23&Me? But yes, there is a problem here. If these genes not turn up for ME/CFS that might be something very important. A link to anxiety is pretty much bound to occur with 'IBS'. I suspect almost anyone with significant anxiety...
  6. Jonathan Edwards

    Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders, 2021, Eijsbout

    This was always my concern for DecodeME. Interestingly, I don't think anything like this turned up with the UK Biobank preliminary look at ME/CFS.
  7. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    I think the explanation starts to get too complicated. William of Ockham would disapprove. If sagging blood pressure is important, which it might be, we don't really need to suggest clots or slow red cells as well If there are clots then sagging blood pressure probably wouldn't make much...
  8. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    I have not read published papers on this but my instinct is that it is a laboratory artefact, because: 1. The plasma samples appear to have undergone freezing and thawing, centrifugation and maybe 'trypsinisation', although that sounds like a confusion by a journalist. The clot shown is over...
  9. Jonathan Edwards

    Aphaeresis/ Apheresis (for removal of microclots)

    I would go further. This looks to me like very irresponsible talk about something that is likely to turn out to be an artefact. There is no excuse for doing anything other than properly controlled studies. Especially if coagulation is involved. The risks are very high in both directions. It...
  10. Jonathan Edwards

    Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term conditions, 2021, Reid et al

    I am not sure what services being overwhelmed would contribute. It doesn't seem a reason to encourage even more people attending physio sessions.
  11. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    I think that post sums things up very well. I don't see any real likelihood that clotting is relevant to ME.
  12. Jonathan Edwards

    Aphaeresis/ Apheresis (for removal of microclots)

    I would expect a micro clot in the circulation to last for maybe a minute or two at most. So I find it hard to see the point of some brief aphaeresis sessions for a condition lasting months.
  13. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    There is a webpage on that under 'Guidelines in Practice. It has a caution about exercise and mentions the NICE guideline for ME but otherwise it is pretty much the same old, same old BPS-style 'holistic' approach with talking therapies and advice from physios on exercising back to health...
  14. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I have sympathy for someone ho has developed Post Covid problems and a medical professional may have useful insight from experiencing an illness but their conclusions are not necessarily entirely helpful. The ida of a GP managing a problem with help from a multidisciplinary tam sounds like the...
  15. Jonathan Edwards

    Aphaeresis/ Apheresis (for removal of microclots)

    I wouldn't subject anyone to apheresis other than in a very well designed trial. I haven't looked at this in detail but it sounds like bad science from what people are posting.
  16. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think it will have a very big impact on the process of reaching an assessment. The problems with the Larun review were well known but the guideline makes them official in a way that means that to revert to the Larun conclusion would require very clear justification. It will be an open test of...
  17. Jonathan Edwards

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    My understanding is that the point of the experiment as to assess the impedance of the cell membranes, not the solution. However, I never understood from the description how they knew what they were measuring. I cannot see any particular reason why macromolecular aggregation should also the...
  18. Jonathan Edwards

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    But that is why they are irrelevant - more than irrelevant, misleading.
  19. Jonathan Edwards

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Just take every opportunity that comes, I think. The guideline process and the round table got a message across to some new people. I try to get the message across to HealthWatch and through the media when asked. I suspect the most productive route for patients is as lay representatives on...
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