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  1. Jonathan Edwards

    United Kingdom: ME Association governance issues

    My reading of the situation is that, however confusing it may be, the payment to Trustees does not appear to have been in line with Articles lodged at Companies House? I am thinking in terms of making some independent enquiries. It would be useful to be sure of these two things: 1. We do not...
  2. Jonathan Edwards

    Complement activation in a model of chronic fatigue syndrome, 2003, Sorensen et al

    I doubt it. I think the findings related to liver metabolism in general, not specific protein production. And what is reported here is a change in activation of protein, not its level.
  3. Jonathan Edwards

    JK Rowling new book — chronic illness references

    I watched the Strike television series last night. The acting is quite entertaining but the script a bit pedestrian and the stuff about the net and anomie pretty obscure. My impression is that Rowling wants to mix a popular crime story with some mind worm she has about people trusting each...
  4. Jonathan Edwards

    Unfavourable glucose metabolism is associated with functional somatic disorders. A cross-sectional general population-based study: 2024 Dantoft, Fink+

    I think it may be interesting that Beentjes and also the study looking at gene combinations from another group flagged up insulin resistance in ME/CFS. This seems to mean that either there is a link to glucose/lipid metabolism that so far we don't have any real grasp of, or that insulin...
  5. Jonathan Edwards

    Is there a treatment for bruxism (teeth grinding)?

    I grind my teeth constantly for absolutely no reason at all. And my teeth haven't worn away. So I don't bother with it.
  6. Jonathan Edwards

    JK Rowling new book — chronic illness references

    I guess it is: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#4 Rowling clearly gets things completely wrong and her approach is inexcusable. But I do recognise what I think she has encountered and extrapolated from. S4ME is a safe place. I continue...
  7. Jonathan Edwards

    Exploring the shared mechanism of fatigue between [lupus] and [ME/CFS]: monocytic dysregulation..., 2024, Zheng et al

    To me this is a nice example of the problems of bioinformatic, 'systems biology' or AI approaches to disease. As far as I can see it is devoid of any biological meaning. They don't even mean genes when they say genes, they mean proteins. There aren't any findings associated with ME/CFS so how...
  8. Jonathan Edwards

    Making sense of a systematic review - 2021 David Tovey

    It reads to me as pretty received dogma stuff about GRADE and RoB. I have sent full text to IC.
  9. Jonathan Edwards

    Making sense of a systematic review - 2021 David Tovey

    The beginning: Abstract The article in last month’s issue explored the place of systematic reviews in informing health care decision making. This article describes the core components of a high-quality systematic review of health care interventions. These components include an assessment of...
  10. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I think this makes sense. When I ask myself how I would recognise ME/CFS I actually think that none of the stuff in the diagnostic criteria lists are very relevant. I see it as a condition with whatever long term disabling symptoms, of a nature and time course that don't seem to make any sense...
  11. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Stuff doesn't get fought in the literature. It just gets forgotten when appropriate. The tradition in scientific literature is to offer new ideas and evidence and let bad ideas die on their own. I know that doesn't help patients but it is the reality. More recently letters and blogs that...
  12. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I think it may be simpler than that. Those trying to define ME wanted to include the features of the acute 'neurological' illness in the definition when that has nothing to do with the chronic disabling illness that may have followed those and other infections. This re-emerged with the ICC...
  13. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    And a thousand variants on it, yes. A feedback loop is not unreasonable but traditionally the two problems were lack of any testable detail and lack of any supportive evidence. PACE showed that the evidence is firmly negative. The recent more detailed story based on systems theory and...
  14. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I agree with Kitty that it probably doesn't make a blind bit of difference. Adding in PEM might well make things worse. The problem is an attitude amongst health care professionals who still see themselves as Shamans curing the sick with magic potions that restore twisted souls. Chronic fatigue...
  15. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    You are missing the point entirely. I am not conflating fibromyalgia with ME/CFS. I am criticising the endless stream of misleading terms that try to label process concepts when we have no process concept to label. I have no reason to think that people with fibromyalgia respond to exercise any...
  16. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    No, but the Oxford criteria were not criteria for ME. They were for chronic fatigue and so legitimate. The PACE trial was a nice demonstration that CBT and GET do not work, whether you recruit widely for chronic fatigue or consider the fewer ME/CFS cases. It has been pretty useful in that...
  17. Jonathan Edwards

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    I think if we can come up with something genuinely sensible at least it has a chance of impacting decision-makers unofficially - that might be charities, bits of NHS, Royal Colleges or whoever. I doubt we are going to write something and have it adopted as such. But just having a sensible...
  18. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    And of course 'exertion intolerance' isn't the critical thing either. People with kidney failure and muscular dystrophy have exertion intolerance. The more subtle concept of PEM is missed.
  19. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I personally don't like it as a newly invented term because two of the four words have no basis. 'Systemic' means nothing I can think of here. It implies some sort of generalised process but we don't know of any process yet. 'Disease' is misleading because again it implies some common process -...
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