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  1. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Looking at those gastro articles I am not sure about that. It looks as if we now have three categories clearly laid out: 1. structural/physical 2. psychiatric, as in psychosis or anorexia nervosa 3. 'functional' The implication being that 'functional' cases, which seems to include my own GI...
  2. Jonathan Edwards

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

    Tachycardia is not a diagnostic requirement for ME as far as I am aware and in fact I thought there was evidence that OI in ME is most often not POT. Certainly odd.
  3. Jonathan Edwards

    Organ and cell-specific biomarkers of Long-COVID identified with targeted proteomics and machine learning, 2023, Patel et al

    Call me old fashioned but I would like to see just one protein consistently (80%) well outside normal range. This sort of study might lead to something very interesting but I am tempted to wait to hear about a replication.
  4. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    The BSG guideline on functional dyspepsia is a hoot - hard to believe really. All the recommendations are strong or very strong and all the evidence is of low or very low quality. What a load of t........
  5. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Thanks @cassava7. That seems to identify what we are up against! From the quotes it looks like the usual unsubstantiated psychologisation with some interesting new pseudo-concepts like DGBI.
  6. Jonathan Edwards

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

    It would certainly be useful if physicians managed to gather some reliable information on it. Considering Greenhalgh's history of critical remarks this lukewarm dish of washing-up water comes as a reminder that such people commonly commit the very crimes they criticise. The treatment section...
  7. Jonathan Edwards

    Gait in ME/CFS

    No, ligaments do not vary in function over days, weeks or months. They can become lax over years in the context of severe muscle weakness but maybe only during growth and development. People with hyper extensible knees, such as a professional ballet dancer I know, do not hyperextend during...
  8. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Do we have good documentation that gastroparesis is a problem in PWME that causes symptoms? This is where I think we lack essential data. To my mind it might be better if we had research that said 'There is no gastroparesis in ME, and no mast cell activation, and no malabsorption and no SIBO...
  9. Jonathan Edwards

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

    Yes, I raised light sensitivity because it might seem central but it is still not central in the central sensitisation sense. So case unproven. Tipping into PEM where any stimulus is too much seems to me to distinguish the valid concept of ME from what I have (and had fifty years ago). My...
  10. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    You may be right but I am not convinced that there are any 'associated comorbid conditions' of relevance. The idea that there is some link between ME and hypermobile states looks likely to be groundless. The problems that there is a group of fringe quasi-academic physicians with large private...
  11. Jonathan Edwards

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

    I don't think anyone knows. I think discussion in terms of 'faulty interpretation of normal signals' ends up meaning whatever you like unless one is specific. All signals will have a normal function at the right time. Interpretation may just mean the way another sort of signal follows the first...
  12. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    That may well be the case. The question is how to provide care guidelines that prevent mismanagement locally. This is where I see the NICE guideline as beating about the bush. Maybe there should be a national advisory service specifically for weight loss in the context of ME and the guidelines...
  13. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Video-fluoroscopy has fallen out of failure because of radiation dosage. I don't think any test can guarantee that there isn't a risk. With a health service staffed with care assistants with no real training one has to assume that someone will do something very stupid at any time. There has to...
  14. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Trouble is, most of it looks like hearsay. I worry that this sort of poorly validated information may actually aggravate the problem.
  15. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I guess it is to avoid aspiration of gastric contents. The presence of a tube is likely to make the oesophageal sphincter inefficient. If acid comes back up and goes into the lungs that is potentially lethal. There is also always the possibility that the tube will pull back if maybe the person...
  16. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I strongly suspect that those two papers are not actually studying people with EDS but the ill-defined group of people who get labelled as hypermobility syndrome/'EDS-HT' collected by clinics with very biased referral inputs.
  17. Jonathan Edwards

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

    If the signalling is neural, no. If it is cytokine or hormonal maybe but maybe not. We have learnt that a lot of chemical signals act quite locally. If there is a secondary impact on nerve fibres then the effects are all invisible but generalised.
  18. Jonathan Edwards

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

    But to me faulty signalling makes much more sense than lack of ATP. Lack of ATP should last for a minute or two, maybe twenty minutes after a marathon run. If the faulty signalling involves hormonal signals or sleep centre cycles or other systems that audit activity over longer periods then...
  19. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    The puzzle is that nowhere is there a policy that people should be denied nutritional support because of a lack of belief in a physical inability to eat. People with anorexia nervosa get nutritional support by whatever means needed, as I understand it. The psychosomatic/physical attribution does...
  20. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    The paper and abstract on gastric emptying are not very impressive. The paper seemed to have no controls. I think it is hard to know how relevant the findings would be to the severe weight loss cases anyway.
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