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  1. Jonathan Edwards

    Rare link between coronavirus vaccines and Long Covid–like illness starts to gain acceptance.

    I cannot see that that has any justification. If almost everyone has been vaccinated then what is the reason to link symptoms to the vaccine? I have not read through everything in the article but from reading most of it it just seems that there are a few medical people with a hunch. Considering...
  2. Jonathan Edwards

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    It was June 2017. I was interviewed on June 14th. The person initially interested was a relatively junior BBC journalist I think with a family member or friend with ME. She seemed to be quite keen on Willy Weir's idea of ME being due to a retrovirus. Michael Buchanan is a heavyweight who was to...
  3. Jonathan Edwards

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    And I think JemPD may well be right. Some journalists are bright cookies, but the majority who make BBC documentaries are more into a fashionable story.
  4. Jonathan Edwards

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    It is a worthy idea. We nearly got Newsnight interested in, I think, 2017, but I was interviewed the night of the Grenfell Tower fire and for whatever other reasons the momentum was lost. But as you say, a lot more has happened since. A simple point is that the BPS illness model is not that ME...
  5. Jonathan Edwards

    First major survey of doctors with Long Covid reveals debilitating impact on health, life and work, 2023, BMA media team

    The BMA is a doctors' union. They could say that urgent biomedical research in to post viral illness in doctors is essential but it might sound a bit hypocritical!
  6. Jonathan Edwards

    Wearable movement-tracking data identify Parkinson’s disease years before clinical diagnosis 2023 Schalkamp et al

    This really should be applicable to ME. It is quite different from just measuring how much activity people do. The result is the pattern of acceleration identified. PWME ought to have signature pattern, or maybe two or three different patterns. A study like this for ME would be much cheaper tha...
  7. Jonathan Edwards

    Issues to consider in dietary intervention studies in ME/CFS

    An interesting question. A lot of good points have been made. My initial reaction is that there should be a primary outcome measure that is based on how many people show a specified improvement on a scale as suggested by Ravn: (a simple visual-analogue scale going from I feel well to I feel...
  8. Jonathan Edwards

    "Drink more water"

    But do we even know that drinking more water is useful for OI? I think it is quite unlikely to be helpful for most causes of OI and there are several, so there is unlikely to be a general rule. The images suggest there are people who think they know how to solver the problem of getting people...
  9. Jonathan Edwards

    "Drink more water"

    I cannot load that link.
  10. Jonathan Edwards

    JAMA: Skeptical of Skeptics, English, 1991 (physician with CFS)

    I agree that much of the is sympathetic butDrEnglish seems to be confusing two different things. Skepticism permeates our profession. It is ingrained during medical training and reinforced by professional experience. (…) Skepticism is widely perceived as the prudent, conservative way to deal...
  11. Jonathan Edwards

    Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

    This paper is too complicated for me to unravel but I have a thought that some others might sort out - I rarely get let down by PWME. Fibronectin circulates in plasma and gets included in fibrin clots as I understand it. So measuring it is serum, which is plasma that has clotted and had the clot...
  12. Jonathan Edwards

    How does the NHS compare to the health care systems of other countries?, 2023, Anandaciva

    A member of my family has been in a London hospital for five months of this year. They are a medical professional like me. It is very clear from the experience that the service will continue to be unsafe and ineffective until basic nursing pay becomes realistic (maybe a 50% increase) and working...
  13. Jonathan Edwards

    Is the International Consensus Criteria (ICC) "valid and reliable"?

    Not really any greater thoughts than you have admirable expressed @Obermann. The additional problem with ICC is that it brings in all sorts of hypothetical aspects of ME/CFS and asks for symptoms to be evidence of those rather than just looking for stable clusters of symptoms. To my mind it is...
  14. Jonathan Edwards

    United Kingdom: London - Royal Free Hospital CFS services

    The website would compete with the Monty Python Dead Parrot Sketch (or Yorkshire Airlines) if it wasn't that this isn't a joke.
  15. Jonathan Edwards

    Closed UK: DecodeME updates, was recruitment thread.

    This shift in criteria sounds like an excellent idea to me. There is often a tendency to be too restrictive about recruitment criteria because of worries about comorbidities confounding results. It may have been a good idea to be very strict at the beginning but I doubt there will be problems in...
  16. Jonathan Edwards

    Large scale phenotyping of long COVID inflammation reveals mechanistic subtypes of disease, 2023, Liew et al.

    Yes. My grouse is that you need to distinguish between monocytes in blood that might by drawn out into tissues full of cytokines from all sorts of sources, like neutrophils, and inflammation full of macrophages making cytokines that call in more cells and therefore drive the inflammation...
  17. Jonathan Edwards

    Large scale phenotyping of long COVID inflammation reveals mechanistic subtypes of disease, 2023, Liew et al.

    It is good to see people at leat trying to measure these things. I guess I wish they would be more realistic about interpretation. I have not had time to read the whole paper. I am wondering if we can be sure that the people with the symptoms and raised markers have symptoms because of Covid...
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