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  1. Jonathan Edwards

    Heresy / Conjecture on the nature of PEM PESE PENE

    Yes but you were talking about autoimmunity - a quite different mechanism from allergy. Are there such tunnels? I have not heard of any, certainly not associated with myoglobin. If the immune system 'destroys' structures there will be inflammation, visible on MRI and histology. If an...
  2. Jonathan Edwards

    Heresy / Conjecture on the nature of PEM PESE PENE

    I don't know of anywhere it is defined as that. It is normally defined as a worsening of symptoms that includes fatigue, pain, and also things like nausea, orthostatic intolerance, sensitivity to light and so on (i.e. the patient symptoms we don't want to dismiss). We don't know whether it has...
  3. Jonathan Edwards

    Heresy / Conjecture on the nature of PEM PESE PENE

    Is myoglobin actually on the outside of the muscle cell? I had thought it was inside. There is no need to take oxygen off haemoglobin. At cellular scale molecules like oxygen and water are zipping about all over the place and through membranes at unimaginable speeds.
  4. Jonathan Edwards

    Heresy / Conjecture on the nature of PEM PESE PENE

    Hi, @FStevenChalmers, I think you are right, this is wrong, but discussion of these things often reveals unexpected ignorances in all of us and we learn a bit. I am unclear why you want to invoke a hapten. Autoimmunity has nothing to do with haptens or trigger antigens as far as we know, other...
  5. Jonathan Edwards

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    As far as I can work out the 'Government Delivery Plan' says nothing about provision of services. My limited involvement in service development suggests to me that it is delegated to people in local Trusts who probably have no real understanding of any of this. Patients may get involved but...
  6. Jonathan Edwards

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    But I think MrMagoo is essentially right. Physios for ME are people who happen to be Physios who understand the problems with physio approaches to ME/CFS. And those problems relate to a general problem with a profession that it is based on a practice of doing what you think ought to work...
  7. Jonathan Edwards

    Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

    The approach to the patient is now so holistic that it includes olfactory training: 'Try smelling this marmalade - that is what we call marmalade smell.' 'Now let's move on to bananas'...
  8. Jonathan Edwards

    Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

    'We have no evidence but we are doing a jolly good job anyway'. Seems to be the message.
  9. Jonathan Edwards

    Functional neurological disorder: new subtypes and shared mechanisms, 2022, Hallett, Dworetzky, Stone et al

    Yes, the hypothesised bad prediction should give the opposite result on a comparison and update model. In fact the whole predictive coding thing is pretty rubbish because it muddles up all sorts of different neural computational processes. The main predictive coding aspect is oculomotor. Our...
  10. Jonathan Edwards

    Functional neurological disorder: new subtypes and shared mechanisms, 2022, Hallett, Dworetzky, Stone et al

    I think that analysis is a misunderstanding. Predictive coding has nothing to do with explaining how we do things 'too fast'. That is an argument about the role of conscious percepts, which occur too late to explain what the brain does in action. The nerve pathways are fast enough. It is just...
  11. Jonathan Edwards

    Cyclophosphamide for myasthenia gravis: a comeback?

    This seems to be just a retrospective study with no controls. And a tiny group so serious adverse reactions might not be picked up (they occur very long term). There was a death from opportunist pneumonia it seems even so. I don't see the point in this. My experience from talking to people...
  12. Jonathan Edwards

    Positive signs for FND: Looking for Criticism

    Hi, @AR561, Yes, I have got familiar with the 'chiropractic medicine' side of things since being interested in ME/CFS and have come across Keiser and MSK Neurology. This is all just fake medicine in my view. The methods they sell have no scientific basis and no evidence basis in clinical...
  13. Jonathan Edwards

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    You have lost a K in the title @ME/CFS Skeptic!
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