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  1. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    Not that I am aware of? Diabetes produces generalised neuropathic changes so gastroparesis would not be surprising. We have no evidence of neuropathic changes in ME as far as I am aware.
  2. Jonathan Edwards

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    Jessica Eccles has been suggesting Long Covid patients are bendy too: https://www.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests Usual Guardian gossip.
  3. Jonathan Edwards

    Preprint Role of the complement system in Long COVID, 2024, Farztdinov, Scheibenbogen et al.

    Ig protein levels vary a lot within normals and Vh gene usage has never turned out to tell us very much except perhaps for Vh4-34 which is anomalous. I suspect noise.
  4. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    So what is 'best clinical evidence'? Are there good quality trials? The recent review article abstracts tend to suggest nobody has got very far either in terms of mechanism or treatment evidence. The only consistent documentation seems to relate to diabetes and whatever is wrong there may be...
  5. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    But in ME/CFS patients, pieces of the virus or bacteria may linger in the body and continue to stimulate the immune system long after the infection should have resolved. Except that they didn't find that and it's a theory older than the hills. Apparently it is also good news that the problem is...
  6. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    I had a look to see what had been published on gastroparesis and ME/CFS and on gastroparesis in general. My findings: Papers on gastroparesis and ME/CFS = 0. Papers on gastroparesis indicate a recognised problem in diabetes (unsurprising) after surgery and with certain infections although these...
  7. Jonathan Edwards

    Protocol Valacyclovir Plus Celecoxib for Post-Acute Sequelae of SARS-CoV-2 (PASC) - Bateman Horne Center - RCT

    I don't understand why there is no stratification to valacyclovir without celecoxib and vice versa. Any positive result can be ascribed to just taking celecoxib (controls not even being allowed to use another NSAID).
  8. Jonathan Edwards

    Paresthesia in ME/CFS

    My understanding is that we have no firm evidence for regional paraesthesia being associated with ME. There are lots of potential causes. Sorting them out requires detailed neurological examination and imaging. Even with investigation a clear explanation is not always found. However, if symptoms...
  9. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Patients are desperate and patients need treatment. And we can't just wait to figure out the entire pathophysiology, like we need to start. I understand where Brian Vastag is coming from but it isn't so much that we haven't figured out the entire pathophysiology. It is that we still have no...
  10. Jonathan Edwards

    Diabetes query

    I don't think jam and sponge indiscretions over a few days will have any long term impact, however barmy they may be at the time. The NHS, as we all know, is falling apart and it does not surprise me that there is no sensible dietetic management but the important thing is to have a regular diet...
  11. Jonathan Edwards

    The NIH should create an Office of Infection-Associated Chronic Illness Research - proposed by the American Association of Scientists, 2024.

    This group of diseases has by and large received little attention or funding in decades past — save for long Covid, which is relatively well-heeled at the moment through the RECOVER trial. Other conditions, including chronic Lyme, mast cell activation syndrome, Ehlers-Danlos syndrome, POTS, and...
  12. Jonathan Edwards

    The involuntary nature of conversion disorder, 2010, V. Voon et al.

    Thinking about this: I think I could argue that the time when we can interpret fMRI in terms of efforts, desires, agency or whatever will have come when the technology is good enough to provide legally robust reliable lie detectors. As far as I know nobody is suggesting that we have that now...
  13. Jonathan Edwards

    The involuntary nature of conversion disorder, 2010, V. Voon et al.

    The argument in the conclusion of the 2010 paper looks bogus to me. Sense of agency and voluntariness are different things. If an apple rolls off the table I will involuntarily jump to catch it but am fully aware that it is 'me' jumping. On the other hand when I have vertigo I lose the automatic...
  14. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    And I'm afraid multiple researchers have messaged me to say they wouldn't go near M.E. because they are simply too scared. That is very alarming Yeah, well, presumably these are researchers who haven't researched ME, because they are afraid of the patients? What sort of researcher or medical...
  15. Jonathan Edwards

    San Francisco Chronicle: Fear of COVID fades even as virus remains a ‘significant threat,’ survey reveals

    By this logic old age is the biggest pandemic of the lot. Something should be done about it!
  16. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    And Vogt's problem seemed to be tinnitus if I remember rightly, which somehow morphed into the territory of ME. There is something peculiarly circular about these stories. Symington tells us to forget the biomedical model. Yet she got better because of brand new brain research into pain...
  17. Jonathan Edwards

    United Kingdom: Sussex & Kent ME/CFS Society News

    I really doubt it. Work on lung function basically means breathing and our brains are pretty good at making sure we breathe enough. Interestingly that does not seem to apply in acute Covid where hypoxia occurs with few symptoms but there are complex reasons for that. I have had scores of...
  18. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I don't think Garner ever claimed he was cured by the Lightning Process. He preferred to spend his money on scuba diving holidays. He seems to have bee cured by a mysterious phone call from a psychiatrist friend in the USA if I remember rightly. Although there was something about contacting some...
  19. Jonathan Edwards

    Has there ever been any evidence that health professionals are more represented among ME patients?

    It reminds me a bit of Peter White's claim that for MECFS there is little or no placebo effect, while at the same time saying that CBT works through a placebo effect (encouraging people to believe they can get better). Which is a bit sad for the PACE trial since it means that CBT should not...
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