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  1. 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...
  2. 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.
  3. 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...
  4. 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

    This article seems to encapsulate the unhelpful beliefs in the physio and sorts medicine world that the NICE guideline made some progress in countering - although not enough. I would like to see David Strain repudiate this sort of thing. It is exactly like the behaviour of some of the...
  5. Jonathan Edwards

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

    I still don't get that. The problem with the service and the working conditions is the gross underfunding, which is compounded by the huge cost of cost-cutting. It is perfectly possible to provide an excellent service that the public can afford as long as the funding is realistic. I agree that...
  6. Jonathan Edwards

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think a lot of work needs to be done to get physios as a whole to see the needed shift. Hopefully PhysiosforME can make headway. This statement seems unhelpful. Why was the process 'understandably' fraught? It was fraught because certain people were holding on to vested interests and didn't...
  7. Jonathan Edwards

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

    I don't follow that. Why would provider interests be relevant to deciding what is useful healthcare?
  8. Jonathan Edwards

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

    To me the key point is that if clots were big enough to explain any of the features of ME they would have been found by now. I also think that considering that a lot of people with severe ME are bed bound if there was an issue with clotting it would have come to light.
  9. Jonathan Edwards

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

    Yes, I think for all hypotheses like this we need to stand back and ask if it fits in any way with what we already know. There are a number of micro-clotting as well as macro-clotting diseases. They include sickle cell disease, TTP, anti-phospholipid syndrome, polycythaemia rubra vera and so...
  10. Jonathan Edwards

    ME/CFS services in the United Kingdom

    Do you know where this is from @Suffolkres ? I agree that there are problems with information like this. Maybe now is the time to try to bring some sense into information for ME.
  11. Jonathan Edwards

    Human to human lyme transmission paper sought

    DNA (PCR) tests and immunology tests are very specific because they use negative controls to ensure you are identifying a particular organism. Microscopy is useful as a screen to see if there is anything there but youth need a specific test to tell if it means anything. Dark field is the...
  12. Jonathan Edwards

    Long Covid epidemiology (prevalence, incidence, recovery rates)

    It reads like Lynne Turner-Stokes.
  13. Jonathan Edwards

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    I looked again at the RCs statement today and realised that it is more petulant whining than defiant denial. I think certain individuals continued to feel that some sort of stand had to be made but all we are really left with is embarrassingly poor arguments about evidence and a feeble attempt...
  14. Jonathan Edwards

    Human to human lyme transmission paper sought

    From what I have seen of the literature and comments recently this dark field technique sounds as if it may be a scam. Finding things that look like spiral organisms under dark field is likely to be pretty unreliable I think. Nowadays things are done with the specific controls provided by...
  15. Jonathan Edwards

    NHS England web pages on ME/CFS

    I think the NHS England rep at RT was Celia Ingham-Clark who is a surgeon by training. Presumably the author of the quoted comment above is a mental health professional. They say they are not familiar with physical health guidelines. They also say they have no interests in ME/CFS. That may be a...
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