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  1. Jonathan Edwards

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    In effect there were two physician and two GP representatives at RT. My reading now is that NICE were confident enough of their position to invite a genuinely representative range of objectors (the main comments were from physicians and GPs), being just about able to make that fit protocol. They...
  2. Jonathan Edwards

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    Yes, 'emotional dysregulation' is an unhelpful red herring here. The Yorkshire group make it explicit that they talk about dysregulation the way I do - applicable to immunology, kidney disease or whatever is not being regulated properly. If I was asked how to categorise ME/CFS I might well say...
  3. Jonathan Edwards

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    I am having another look at this document on dysregulation from BACME. I think some of it is problematic but I am warming to the general idea of framing ME as a dysregulation. Dysregulation is quite a good way to describe hypertension, rheumatoid arthritis, asthma, cancer, diabetes, you name it...
  4. Jonathan Edwards

    Does the Dense Fine Speckled Pattern in an ANA Test Actually Tell Us Anything Important Clinically?, 2021, Lundgren et al

    This is almost certainly an artefact of sampling. The conclusions look naive. It all depends on who has had an ANA pattern screen done and why.
  5. Jonathan Edwards

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    My guess was that he lives in Hampstead. It turns out he lives in Hampstead. Just along from the Freud Museum.
  6. Jonathan Edwards

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    I agree. The most plausible explanation I have seen is that these are people with very usual neurological episodes from things like vestibular neuronitis (very common) and that this is really 'All in the marketing strategy of US intelligence organisations'. Not in the minds of the patients and...
  7. Jonathan Edwards

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I think it might be marginally clearer but I don't think people should expect any dramatic change. Nothing major was discussed at RT and I don't think NICE would introduce anything that had not been covered there.
  8. Jonathan Edwards

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    From my vantage point it seems that the uncertainty is small enough to get a decent nights sleep, if unlike me, you are not suffering from carpal tunnel syndrome. I am hoping to get it injected tomorrow so even I might sleep over the weekend. There was no suggestion of any adverse changes being...
  9. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I think I am clear what was won. 1. Respect 2. An official recognition that the evidence base for treatments involving increasing exercise is too poor to use as a base for treatment (other than in that it looks pretty clearly negative) That is enough for one step.
  10. Jonathan Edwards

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?, 2021, Gandasegui et al

    I think they are using pathology in the widest sense of something wrong. A bug written in to Microsoft Word is then a 'pathology' even if it does not mean anything wrong with your computer. They appear to be using functional in the honest sense of a 'software issue' of this sort rather than due...
  11. Jonathan Edwards

    TV Program: Clapped Out: Is the NHS Broken?, Dispatches, Channel 4, UK

    As far as I am concerned the problem is very simple - underfunding. I don't know why journalists want to go with the alternative waffle they get spoon-fed. In my experience continental Europe medicine is much more hierarchical than in the UK so I am not sure what that was about. The big change...
  12. Jonathan Edwards

    Informed Consent

    Sorry but it we want to get anywhere with the science we have to stick to meaningful scientific concepts rather than just what it feels like. The subject concept of energy has nothing to do with energy in scientific terms. What I think should be avoided is interpreting scientific studies like...
  13. Jonathan Edwards

    Informed Consent

    I think this just confuses things. If you start talking about energy issues to physio they will think up all sorts of reasons why you should do this or that or the other. The real problem is that therapists cannot help themselves inventing theories and rising them without any justification. We...
  14. Jonathan Edwards

    Informed Consent

    I don't think we have research that shows energy production abnormalities that can be reliably translated into clinical implications. Everything is tentative and indirect. If GET and ME/CBT are not to be recommended then the rationale would not arise.
  15. Jonathan Edwards

    Pentosan polysulfate sodium for Ross River virus-induced arthralgia: a phase 2a, ... double-blind, placebo-controlled study, 2021, Krishnan et

    That sounds like a new way of scratching around for an excuse for not getting any results doesn't it? I am not impressed with the 'biomarkers' they chose to report - biomarkers of what? Why not give results for something we know a bit more about like CRP or ESR? I suspect pentosan polysulphate...
  16. Jonathan Edwards

    On line ‘survey’ re UK CFS/ME specialist services

    Yes, I cannot see this have any material impact on Monday other than making its authors appear foolish.
  17. Jonathan Edwards

    Do adolescents w/CFS/ME & co-morbid anxiety &/or depressive symptoms think differently to those who do not have co-morbid psychopathology?,2020,Loades

    You have to understand, @Trish, that we live in The Matrix, except that it is a sort of slime mould of interacting human minds forming a guey sheet that slimes over the earth. Every so often the slime mould buds off new blubs of interacting minds that float out into the aether across the...
  18. Jonathan Edwards

    I need a good summary of the problems with mind-body theory

    I think that article may confuse. It claims that Cartesian Dualism is a terrible misunderstanding and that the mind and body interact. But Cartesian Dualism is the theory that mind and body interact. The psychologists have got this in a complete muddle.
  19. Jonathan Edwards

    What is the evidence for collagen degradation in ME/CFS?

    I am fairly certain there is nothing to this. And it does not add up in any way. EDS is not particularly associated with collagen breakdown. That is a confusion. It is a disorder of connective tissue construction. Immunological processes can sometimes lead to collagen breakdown but most do not...
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