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  1. Jonathan Edwards

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

    In years gone by the extra bits were often double and unfinished, especially if covered by a lining.
  2. Jonathan Edwards

    Long Covid in the media and social media 2023

    It seems more likely that the right idea has simply not been put forward yet. The ideas put forward so far are mostly repetition the established wisdom.
  3. Jonathan Edwards

    Long Covid in the media and social media 2023

    It is sad, but not unexpected, to see the lack of anything actually discovered in this article. It is a bit like a report on a collection of different sized space ships landing in Bridlington. "Scientists speculate that they might be from Mars or Neptune or another solar system (er yes)."...
  4. Jonathan Edwards

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

    It reminds me of that extra bit of material attached to a jeans pocket below the stitching that carries on just as two flaps of material going nowhere that slides down next to your leg when you put the jeans on. That seems to be Cochrane now - a continuation that no longer does anything and is...
  5. Jonathan Edwards

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    Actually we do have this in the UK. It is the MRC. To be fair they did just this. Eleanor Riley was charged with asking experts what research was considered worth pursuing and what new avenues were worth looking in to. They identified a genome-wide study and offered funding. The chief reason...
  6. Jonathan Edwards

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    It is a puzzling finding but without knowing how the levels found normally relate to exertion or other 'stress' it is hard to know what to make of it. Hanson is an intelligent investigator and I think this is a useful comment. Unexpected findings are often the most important.
  7. Jonathan Edwards

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    The findings may be the beginning of something important but I think we should not lose sight of just how different it would be for a patient to go through a research procedure from a healthy control. When I started out on the wards I did a project looking at cortisol levels and they went up...
  8. Jonathan Edwards

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    Is it possible that the changes in controls are due to activities that are normally associated with a pleasurable sense of having done a nice bike ride whereas these do not occur in PWME who are just trying not to feel too awful? Maybe eating a big dinner? Having a good long sleep?
  9. Jonathan Edwards

    Covid-19 and Ehlers-Danlos syndrome, 2023, Fajloun et al

    It just looks like ill-informed speculation with no evidence and a gratuitous remark about withholding vaccines. I am not sure spreading disinformation comes under 'well-intentioned'!
  10. Jonathan Edwards

    Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue..., 2023, Guo,Lipkin et al

    All I can remember about butyrate is that it tastes of pineapple. Maybe the cure for ME is eating pineapple for breakfast. I have not found it helps with Long Covid though.
  11. Jonathan Edwards

    Exercise tolerance, fatigue, mental health and employment status at 5 and 12 months following COVID-19 illness in physically trained population, 2023

    Fit people go on being ill it seems. Certainly my experience. It may not be directly relevant to ME. I don't seem to have PEM, for instance. But I suspect that there is some common factor involved even if not. Military personnel may be an atypical group but they may also be a useful group to...
  12. Jonathan Edwards

    Dr Stephen j Wroe

    He appears to be a sympathetic neurologist in his late sixties with a Mohican haircut. I know nothing of him personally but he doesn't sound particularly BPS. He looks to be a competent neurologist, which sounds what you want. He is also a neurophysiologist so is likely to be reliable at...
  13. Jonathan Edwards

    UK: University College London hospitals (NHS)

    The final paragraph of the internet history of the RL Hosp. Integ. Med. says: The thread running through the highs and lows of the last 160 years is not great names, nor even the contribution to the art and science of homeopathy or integrated medicine. The ideal that has sustained the Royal...
  14. Jonathan Edwards

    UK: University College London hospitals (NHS)

    Maybe stay focused on getting a diagnosis and politely decline any dubious proposals for treatment.
  15. Jonathan Edwards

    UK: University College London hospitals (NHS)

    That does not look at all promising. The royal London Homeopathic Hospital was supposed to have been brought under reliable evidence-based medicine when it changed its name in 2007. Looking at the website for its history and the current staffing and services it looks clear that this never...
  16. Jonathan Edwards

    Bath-ing after foot surgery

    I see you found the commercial version - which looked as if it might cost 'an arm and a leg' but at £22 is maybe not so bad!
  17. Jonathan Edwards

    Bath-ing after foot surgery

    I have never tried to achieve this but if faced with the problem I would try: 1. Putting the smallest latex glove you can get to fit onto the bad forefoot. It might help to put some tubigrip round the foot first so that there are no places water can trickle under the glove. AND 2. Putting a...
  18. Jonathan Edwards

    Autoantigen profiling reveals a shared post-COVID signature in fully recovered and Long COVID patients, 2023

    Methinks that the Lady doth 'robust' too much - without giving us any data.
  19. Jonathan Edwards

    What to expect from infectious disease testing?

    You are right. Probably nothing. Antibody tests at one point in time say very little about one individual for most infectious agents.
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