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  1. 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    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot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...
  2. 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...
  3. 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...
  4. 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    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot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.
  5. Jonathan Edwards

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

    It's all George Monbiot's fault for writing that article.
  6. 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    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot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!
  7. 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...
  8. 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 -...
  9. Jonathan Edwards

    Who is Simon Wessely?

    Only for those who don't have a copy of Debrett's on the occasional table in the lavatory.
  10. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I think so I am afraid. For a rheumatoid clinic service evaluation must be easy: Expenditure £4,765,000 Of which: Drug budget £2,210,000 (controlled trial based, NICE approved - tick) Physicians to prescribe drugs £650,000 (NICE approved - tick) Orthopaedic...
  11. Jonathan Edwards

    News from Australia

    Also in the Guardian https://www.theguardian.com/society/2024/mar/15/long-covid-symptoms-flu-cold Why do they have to say 'study finds' when they should be saying 'study says'. The usual infantile Guardian health reporting. But again, at least a few sceptics get reported. As far as I can see...
  12. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    In my experience as a clinician, outcome measures never provided a basis for assessment of service provision. Maybe they should but I find it hard to see how it could have been organised. What happened was that there was properly controlled trials of treatments and those treatments that were...
  13. Jonathan Edwards

    Mitochondrial complex I activity in microglia sustains neuroinflammation 2024 Peruzzotti-Jametti et al

    This is a very common misconception - that somehow inflammation is 'perpetuated' by myeloid cell activity. The inflammation in multiple sclerosis is due to an abnormal immune response, which causes trouble at the beginning, and does much the same from there on. Nothing 'perpetuates' the...
  14. Jonathan Edwards

    TSHR-based chimeric antigen receptor T cell specifically deplete auto-reactive B lymphocytes for treatment of autoimmune thyroid disease, 2023, Huang+

    Thyroidectomy does not deal with Graves ophthalmopathy, which can be progressive and lead to loss of sight. The ophthalmopathy is mediated by antibodies independent of thyroid hormone levels. My thyroid endocrine colleague was one of the first to ask me to help with a rituximab trial in 2000...
  15. Jonathan Edwards

    Physical Activity, Long-COVID, and Inactivity: A Detrimental Endless Loop, 2024, Lippi et al.

    Seems like an article in the Journal of Bananas saying bananas are good.
  16. Jonathan Edwards

    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman +

    I presume so. The problem as ever is that unless you know why you are measuring something there is no way of knowing how you should be doing the measuring. Why measure after a 'CPET' rather than just some standardised form of exertion. Why call methods 'mixed' rather than just intelligently...
  17. Jonathan Edwards

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

    An error in the link is not going to cause any harm. Anyone who chases the links should see what has happened.
  18. Jonathan Edwards

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

    Looks as if that second links wrong - should be to the 'Anomalies' paper. I will email George if that looks to be so.
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