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  1. 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.
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. 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...
  7. 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.
  8. 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...
  9. 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.
  10. 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.
  11. Jonathan Edwards

    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

    George M is expecting some flak. If so I will probably respond with a letter.
  12. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I am a bit involved with other things at present to engage in polishing what looks like a very good draft letter. I am very happy to sign a letter if it helps and if I do I will go through it in detail in case I can suggest anything. But others have done the work and know the detail so I doubt I...
  13. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    Part of the problem is that there is no scientific community any more. It has been destroyed by the publication companies and by politics related to commercial pressures with universities. The science community I grew up in with people like Andrew Huxley and Francis Crick simply no longer...
  14. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    The reality is more depressing. Big national patient organisations for big common diseases of which an example might be hmm nudge nudge, maybe that one, can be as misguided as the Science Media Centre if they want to be. I have been there done that.
  15. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    I am not saying that and I remarked to Hutan that I agree with you on that. But look at it this way. As a seasoned biomedical scientist with a track record it is very clear to me that the combined expertise and knowledge base of S4ME members in terms of worthwhile research in ME/CFS is way...
  16. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    Not sure what voted or directed would mean here? If someone else funded it and the patients were keen I cannot see we can object. it might have been better to put money into other things but to be honest there were precious few leads to pick up on. I don't think XMRV was a fraud in the sense of...
  17. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    This is where I would worry. Patient organisations are a very mixed bag. There are very few official 'national organisations'. For rheumatoid in the UK there are several different sorts of organisation, some purely patient run, others mixed. Some have strong links with particular researchers...
  18. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    I think Hutan is talking about all these things.
  19. Jonathan Edwards

    Making a 'Charter for Ethical ME/CFS Research'

    And surely that is entirely their prerogative. Implausible theories sometimes turn out right. The problem there was just poor lab science. There is a big difference between the influence of direct patient funding without scientific peer review - which until recently has been fairly limited -...
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