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  1. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I think that is too general. It could include not being able to get to the shops - and for some probably does. We need an agreed description of the sort of problem that occurs despite lots of people being around offering food and can lead to starvation.
  2. Jonathan Edwards

    Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

    I probably cannot give much more detail of any reliability. The hypothalamus is where temperature is regulated and where the central nausea centre is. It almost certainly controls shivering as well as fever. Autonomic discharges are features of various adverse states and I am not good on the...
  3. Jonathan Edwards

    Practice Pointer: Orthostatic tachycardia after covid-19 2023 Espinosa-Gonzalez, Greenhalgh et al

    Those are the defined groups. My understanding is that many PWME may have OI for neither reason. OI is not necessarily due to haemodynamic failure. So rather than being an umbrella term it is a term for a particular symptom. If maybe 20% of ME cases actually have POT then criteria for POT are...
  4. Jonathan Edwards

    EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe, 2020, Nacul et al.

    I think it should be 0.15 per 1000 per year. Assuming people only get ME once that would give about 1% lifetime rate which I think fits with about 0.2-0.4% prevalence.
  5. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I can see the problem but I think it may be important not to be squeamish about this. Lives depend on it. I can think of various psychiatric causes of eating disorders where we can equally say that the brain problem is downstream of some other cause. People treated for craniopharyngeoma can...
  6. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Although ME does get compared with MS they have nothing in common in terms of mechanism as far as we know. MS produces swallowing problems by demyelination of central connections of swallowing nerves (chiefly 9th cranial nerve). ME involves nothing similar that we know of or have reason to...
  7. Jonathan Edwards

    Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

    Good points @Simon M. Feeling terrible when trying to move with flu is attributed to cytokines like TNF and Interferon sensitising nerves. The precise mechanism may not be clear but release of prostanoids (potent neural sensitisers, as indicated by the effect of ibuprofen) would be an obvious...
  8. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Thanks that worked fine. So the story highlights this antagonism between nutrition units and 'ME specialists and family'. Why, why, why, cannot these 'ME specialists' see the problem being created? No doubt there are shortcomings to the nutritional care - we have seen why that is likely - but...
  9. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Unfortunately, I cannot get into the Times. It may be because I have used their free trial before.
  10. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I cannot access the Times piece without paying it seems.
  11. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    And I think this is exactly the wrong thing to be feeding to the public perception. Of course it is right but it is a red flag to the bull. It is also misleading to the extent that there isn't actually any scientific evidence to support anything.
  12. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Maybe step away for a bit. But those documents are very revealing. They show the depth of the problem in gastroenterology and its nature very clearly.
  13. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I agree that I am putting forward my own theory but I would argue that it is a reasonable working theory in line with what we know about ME - that it is a very unusual illness characterised by intolerances of a whole range of stimuli. What I am advocating against are theories of mechanisms for...
  14. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I suspect they mediate much of the symptomatology but then the question is what is upsetting the hypothalamus and vagus, which may be immunological.
  15. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Yes, all through the vagus nerve, which operates according the instructions of the hypothalamus. We have no evidence for anything being primarily wrong in the gut. It is hard to believe that there are enough different things primarily wrong in the gut to make eating impossible. If the problem is...
  16. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    It is worth reading the stuff cited above in the thread "One author of the BSG’s guideline on functional dyspepsia, Dr Peter Paine (from the Salford Royal NHS Foundation Trust), wrote about ME/CFS as a central sensitization disorder that should require removal of tube feeding and rehab, in a...
  17. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    They emphasise that the cause of inability to eat is physical, contrasting it with psychological.
  18. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Psychosis implies a belief that is outside what can reasonably be considered an imbalanced version of normal beliefs and reasons. So believing that you can't eat or shouldn't eat based on some misunderstanding of what is going on is not psychosis. In my wife's case her beliefs had bizarre...
  19. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    It doesn't need a thread. The vagus provides the neural control for the gut - input and output. The hypothalamus controls nausea. Unless the gut is actually blocked by a stricture, which has never been reported as far as I know, this is about all there is.
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