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  1. Jonathan Edwards

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Dear @phil_in_bristol, I understand your commitment and desire to help. However, 'it wouldn't look good' is never a reason to misinform is it? Keeping up appearances isn't what care is about. Real care is saying 'sorry but we have realised that our information is not as helpful as it should be...
  2. Jonathan Edwards

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    That abstract sounds to me like a misunderstanding of statistics. I d not see what it means to be statistically confident of a change in an individual. If there was a change, however, small, there was a change. I am not sure that the variance in others is relevant.
  3. Jonathan Edwards

    MEAction: Join Our Values and Policy Initiative! September 2019

    I have come to think of the GRADE handbook as inexpert opinion!
  4. Jonathan Edwards

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    Actual usefulness is what clinical usefulness means. Clinical usefulness means relevant the patient rather than a lab or pathology specimen or questionnaire. It has nothing to do with statistical significance - it is defined as not being that, so I cannot see how it can have anything to do with...
  5. Jonathan Edwards

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    I don't actually think statistics come in to the concept of a clinically useful difference. A clinically useful difference is defined by clinical usefulness and should have nothing to do with variance or SD as far as I understand it. I had never heard of this way of defining useful difference...
  6. Jonathan Edwards

    MEAction: Join Our Values and Policy Initiative! September 2019

    I don't think that is right. 'Clinical experts' do not come into it, only evidence. I am not sure what 'best practice' means other than practice based on reliable evidence in this context. Experts may be useful in pointing out potential flaws in what looks like reliable evidence but that is...
  7. Jonathan Edwards

    Germany: "Pschyrembel" adopts ICC

    This does not look like an article to be pleased about. it seems to be a mish-mash of second hand material put together by someone with no idea about ME.
  8. Jonathan Edwards

    Assessment at clinics

    I don't disagree with the need for more accountability in medicine. But I think it really is very difficult to see how you rate individual clinics or practitioners without spending huge amounts of money. And for the last few decades governments have focused on cutting costs and sweeping the...
  9. Jonathan Edwards

    Assessment at clinics

    On the contrary. Proper trials check that methods work. You then apply them and you can check that you are applying them consistently. But you don't get information about whether treatments work from auditing routine clinics.
  10. Jonathan Edwards

    Assessment at clinics

    I doubt this can ever be done. For most specialities it is never done because it is realised that there are too many confounders to generate data that makes any sense. In rheumatology nobody checks clinics to see if they are getting good results with rheumatoid arthritis. We understand that...
  11. Jonathan Edwards

    New Scientist: Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

    This sounds like a quicker test rather than a better one. I cannot see that antibody based tests can do anything more than indicate that the person is likely to have met a Lyme bacterium some time in the past.
  12. Jonathan Edwards

    A potential S4ME project: What are the basic science facts that ME advocates need to know and understand?

    I think the idea is to stick to what can reasonably be called facts. Promising results are something quite different.
  13. Jonathan Edwards

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    I had never heard of this MID before getting into ME studies - and I had spent years working on trials and acting as expert witness in the law courts on trials. As far as I can see it has no relevance to clinical importance. I used a slide of the 3.4 change in PACE for my NICE presentation with...
  14. Jonathan Edwards

    A proposal for ME Action: a commitment to evidence-based medicine

    I think it may be the way around. All advocacy groups are pretty much agreed that treatments like CBT and GET are not based on good evidence. The need to emphasise evidence quality is because ‘biomedical’ (drugs or surgery) treatments based on just as weak evidence are not similarly being called...
  15. Jonathan Edwards

    Brain inflammation

    No need. That was the sort thing I was referring to - empty vessels.
  16. Jonathan Edwards

    Brain inflammation

    They are by the empty academic vessels who make most noise, just as coronary artery disease has been. To someone trained in inflammatory pathology these proclamations make little sense.
  17. Jonathan Edwards

    Brain inflammation

    If I knew the answer @Bill, we wouldn’t be in this mess!
  18. Jonathan Edwards

    Brain inflammation

    Not in any very meaningful sense of inflammation. There may be some microglial activation but I rather suspect that microglial activation in brain disease is an effect of what is wrong, not a cause.
  19. Jonathan Edwards

    Brain inflammation

    Yes, but this is not realistic. Lots of cells use anaerobic respiration - like cartilage cells for instance. Normal brain is aerobic but if there is more lactate then it is clearly not normal. The problem with blaming immune cells is that if there were enough immune cells (white blood cells...
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