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  1. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    So what are the statistical chances of more than one person in the trial having undiagnosed PA? I am sorry but, like most studies of supplements, this is junk and I see little point in trying to find obscure reasons to justify it! They should have done a proper trial and they could easily have...
  2. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    There is also the puzzle that the responders already had higher B12 levels at the start. Maybe they 'responded' because they were into vitamins and had taken more before. The possible confounders here could fill a book. There is no justification for not just doing a double blind trial.
  3. Jonathan Edwards

    Action for M.E. 2019 AGM and conference 15th October 2019

    I think an important point of the Nacul study was that definition of ME is so uncertain that you have a tenfold range of possible prevalence and in order to know what prevalence is for any given set of criteria you have to re-check each case because the raw data on records will be wildly...
  4. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    I suspect the non-responders could not cope as well with the faff of going on sticking stuff in their nose and were non-responders because they didn't really buy in to the placebo effect on offer. I thought B12 absorption was supposed to be dependent on intrinsic facts in the stomach and since...
  5. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    In the non-responders, only a small but significant increase in vitamin B12 levels was observed. In contrast, in responders, the number of steps, the physical activity scale of the RAND-36, and the vitamin B12 serum levels increased significantly. I cannot be bothered to read more than the...
  6. Jonathan Edwards

    Action for M.E. 2019 AGM and conference 15th October 2019

    This struck me hard in the context of the NICE committee. The answer to the criticism of PACE from the therapists is that they do not do the treatment that way anyway. So there is no evidence base at all! They do not appear to understand the ethical responsibility to know what they are doing. It...
  7. 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...
  8. 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.
  9. Jonathan Edwards

    MEAction: Join Our Values and Policy Initiative! September 2019

    I have come to think of the GRADE handbook as inexpert opinion!
  10. 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...
  11. 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...
  12. 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...
  13. 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.
  14. 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...
  15. 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.
  16. 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...
  17. 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.
  18. 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.
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