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  1. Jonathan Edwards

    The Conners Continuous Performance Test CPT3™: Is it a reliable marker to predict neurocognitive dysfunction in ME/CFS ? 2023, Fernandez-Quiros et al

    trouble is you cannot do any research on people without asking them if it is alright to do it. So if the intention was to publish data on cognition you would have to ask the patients to fill in a consent form before doing the multiple Captchas! Of course that might do the job but if it did you...
  2. Jonathan Edwards

    The Conners Continuous Performance Test CPT3™: Is it a reliable marker to predict neurocognitive dysfunction in ME/CFS ? 2023, Fernandez-Quiros et al

    It would have been better if we were told exactly what tasks PWME were 'worse' on rather than pre-interpreting them in psychological terms. But maybe there is something here that might be of use. I have a sneaking feeling that I would only take seriously the results of a test of cognitive...
  3. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    There are 1,117 papers on PubMed on this DGBI diagnosis (disorders of gut brain interaction). Most of it is about microbiota affecting the brain. It has been going for five years at least. It looks as if the gastroenterologists have invented a fairy story to allow them to publish rubbish papers...
  4. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I have not delved into that. They are being propagated by British gastroenterologists under the auspices of their professional body.
  5. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Reading the BSG literature it seems that things go much further than ignorance and social attitudes. A case is being made for specific withdrawal or withholding of feeding tubes in the ME/MUS category based on bogus BPS theorising and new invented diagnostic names. It is pretty worrying stuff.
  6. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Eating difficulties sounds a reasonable way to cover it.
  7. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    This is clearly an important element. However, the literature from the British Society for Gastroenterology suggests a deliberate disincentive to use feeding support measures in people with ME or 'MUS'.
  8. 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.
  9. 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...
  10. 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...
  11. 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.
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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.
  17. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I cannot access the Times piece without paying it seems.
  18. 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.
  19. 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.
  20. 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...
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