Search results

  1. Jonathan Edwards

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

    Not sure that muddling your arguments is blameless. It is quite hard to work out what he is arguing about professions. I presume that professionals are much more likely to phone a helpline simply because they are more likely to have got diagnosed. And 'study after study' does not seem to be...
  2. Jonathan Edwards

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

    Yes that is the point. Moreover, the acute phase that got labelled a myalgic encephalomyelitis probably has no more to do with ME as we now know it than glandular fever or Q fever. It is a bit like confusing Covid with Long Covid. Covid affects sexes equally and is much worse in the overweight...
  3. Jonathan Edwards

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

    This is an important document. I have been thinking that this is perhaps the next big battle that focus needs to be turned on. I am hoping to make a bit of headway but want to keep things confidential at present. NICE made some sensible comments but more is needed. For GET and CBT the Royal...
  4. Jonathan Edwards

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

    I think it is a matter of recorded fact that a large number of nurses and less so doctors were hospitalised in the Royal Free case. In those days there were nurses homes and doctors residences and high doses of virus may have spread in the kitchens. And oI think in the 1950s the Royal Free...
  5. Jonathan Edwards

    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    So PWME find themselves in the position we hypothesised about on PR ten years ago. Do you keep some services running just so that there is something, or do you scrap the lot. There were differing views then and the dilemma remains.
  6. Jonathan Edwards

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

    As far as I know health professional over-representation only ever applied to the acute phase of the Royal Free epidemic. Over-representation in an epidemic with hospitalisation seems unsurprising. Lots of health workers got Covid.
  7. Jonathan Edwards

    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    'should not be offered exercise-based treatments, unless the person feels ready to progress. If so, exercise should be overseen by a specialist ME/CFS physiotherapist and include regular review, information about the potential risks, how to recognise and manage a flare-up, and very careful...
  8. Jonathan Edwards

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

    Should US PWME be careful what they wish for? I have no idea what pioneering next generation means (except maybe that nobody else has any idea yet either) but might the diagnostics already be in the pipeline with fMRI scans picking up that special effort preference? And might the treatment...
  9. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Indeed, this is the sort of parroted empty drivel I got used to from 'pain specialists' thirty years ago. The most salient thing is the lack of any actual understanding of the 'evidence' being presented. A word salad of non sequiturs if you like. And the chairman introduces them as from the...
  10. Jonathan Edwards

    Neuronal dynamics direct cerebrospinal fluid perfusion and brain clearance 2024 Jiang-Xie et al

    I suspect this is yet another high profile piece of pseudoscience. I am not aware of any brain diseases being due to accumulation of metabolic waste. Metabolic waste normally is cleared by venules, not lymphatics. It is hard to see which direction synchronised neuronal ion shifts could usefully...
  11. Jonathan Edwards

    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

    Excellent. It would be hard to think of two damper squibs than the last couple of letters. This is good from Garner:'a school of thought supported by scientists who believe the condition is a complex interplay between the biological and psychological.' Yes, well, can we be done with believing...
  12. Jonathan Edwards

    ME/CFS vs atypical depression

    The classification of mental illness in the US has always been significantly different from in the UK. Which presumably simply means that you can move these names around how you like. Depression is a particularly unhelpful category I think. It simply means a negative state of some sort. The...
  13. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    It is intriguing that this NCCIH seems to be founded on the basis that people with non-existent disease particularly deserve treatments that haven't been shown to work. Maybe they realised that for non-existent diseases treatments can't work, but since these people keep coming they need a good...
  14. Jonathan Edwards

    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

    @dave30th To be precise, Nanki-Poo was the Lord High Executioner and Pooh-Bah was the Lord High Everything Else Edit: The LHE was of course Ko-Ko, my mistake. Nanki-Poo was Yum-Yum's beau.
  15. Jonathan Edwards

    UK, Guardian, Alarming’ rise in Americans with long Covid symptoms

    It's all George Monbiot's fault for writing that article.
  16. Jonathan Edwards

    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

    Perhaps things will remain quiet. Perhaps it is the first time the BPS Pooh-Bahs have been criticised by a more important person than them!
  17. Jonathan Edwards

    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    "This acknowledged the ‘patient’s voice’, which had been highlighting the harm done by these treatments for many years." Except that it didn't. It just looked at the quality of evidence in the normal way. "The guideline committee had strong representation from people with lived experience of...
  18. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    "In this revised description, interoception includes the processes by which an organism senses, interprets, integrates, and regulates signals from within itself." Well, that isn't interception, matey. Regulation involves output. ~-ception is input. So you are likely to get yourselves confused -...
Back
Top Bottom