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  1. Jonathan Edwards

    The Role of Cell Adhesion & Cytoskeleton Dynamics in the Pathogenesis of the Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders, 2021, Malek

    Defects in the fibroblasts by definition are responsible for the defects in the collagen network but that is not what they are suggesting as far as I can see.
  2. Jonathan Edwards

    Let’s end the stigma of psychosomatic illness The Times (London) 22/04/2021

    I am not sure that that would be the source (if there really is one) since the paper talks specifically of neurological and gastroenterological outpatients. The proportion of patients presenting with symptoms for which doctors cannot find a clear explanation is higher in those two specialities...
  3. Jonathan Edwards

    ME Association Statement on Exercise in ME/CFS and Long Covid, April 2021

    But there is no need to fall in to that trap. It seems to me that they have fallen into the important trap - of giving credence to the 'escape clause' in the NICE draft that suggests that as long as GET is a bit wobbly it will do. Nobody has to tell people not to exercise. They just need to be...
  4. Jonathan Edwards

    Functional Neurological Disorders (FNDs) in the media

    An interesting thought. In fact reading the article as a physician it struck me that it would have to be a peculiarly bitter and twisted failure of a doctor to want to write this. If he was any good and had this sort of attitude to humanity why is he not making a million a year at JP Morgan or...
  5. Jonathan Edwards

    The Role of Cell Adhesion & Cytoskeleton Dynamics in the Pathogenesis of the Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders, 2021, Malek

    Thes people work on the mechanics of fibroblasts and want hEDS/HSD (whatever that might be) to be a disorder of the mechanics of fibroblasts. It looks totally implausible to me. The mechanical property of being able to bend your elbow backwards by 15 degrees cannot be due to the mechanics of...
  6. Jonathan Edwards

    ME Association Statement on Exercise in ME/CFS and Long Covid, April 2021

    It seems to me a pity to emphasise the inflexible and regimented aspects. The evidence tells us nothing about that. It tells us that as far as we know exercise does not make ill people better - period. The known benefits of exercise are in keeping people well or restoring function following...
  7. Jonathan Edwards

    Functional autoantibodies against G-protein coupled receptors in patients with persistent post-COVID-19 symptoms, 2021, Wallukat et al

    Probably not if the assays are designed to make money out of coming out positive on patients. There is also an issue with having antibodies to more than one receptor. Autoimmunity of significance is usually directed at one or perhaps two specific targets only. The more targets showing positive...
  8. Jonathan Edwards

    Exercise Guidelines for Postural Tachycardia Syndrome, De Wandele, Low, Rowe, Simmonds, 2020

    The abstract looks as if it has just been made up like the BPS people do. I very much doubt there is a scrap of evidence for any of it. 'thought to counteract' - who by? - seems like people who muddle lots of things together to me.
  9. Jonathan Edwards

    Reports from participants in GET and CBT trials

    I don't quite follow that. Severe anaemia does not require an iron panel - just a blood count. For anaemia to cause cardiac symptoms the simple blood count would need to be grossly abnormal.
  10. Jonathan Edwards

    Functional autoantibodies against G-protein coupled receptors in patients with persistent post-COVID-19 symptoms, 2021, Wallukat et al

    Enthusiasts will always claim that the real antibodies show up on special tests. The reality is that the levels of autoantibodies of this sort are hardly any different from normals in the studies that try to show a difference. Nobody should take them seriously in ME/CFS and I suspect to in...
  11. Jonathan Edwards

    Anticipation of and response to exercise in adolescents with CFS: An experimental study, 2021, Loades, Chalder et al

    I wonder what the results would have been if the control group was children awaiting heart-lung transplant for severe genetic lung disease? It might have been considered unethical to include really sick children in a control group I suppose.
  12. Jonathan Edwards

    Labelling Long COVID and ME/CFS symptoms in children 'mental health'

    You might even think that they caused more chronic illness than George Monbiot has had hot dinners.
  13. Jonathan Edwards

    Labelling Long COVID and ME/CFS symptoms in children 'mental health'

    It will also establish a medical diagnosis and operational definition of the condition, and look at how it might be treated. That seems a bit like establishing an operational definition of phlogiston without checking whether it exists. A foolish consistency is the hobgoblin....
  14. Jonathan Edwards

    Labelling Long COVID and ME/CFS symptoms in children 'mental health'

    I agree, it is the same awful muddle by the same muddled people. Why on earth should anyone want more studies of graded activity or rehab when it is now clear they have no place in CFS anyway. How do all these symptoms suddenly fall under the roof of mental health - indeed? How are they going...
  15. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    So we have the confessions of an ace hypochondriac. What does that have to do with people who are still ill? Who has 'spreadsheets and symptom-checker charts'?
  16. Jonathan Edwards

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    High blood pressure deserves standard investigation and treatment but it has nothing to do with ME as far as we know. So there is no reason to put it in to a list of drugs for ME.
  17. Jonathan Edwards

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    No I am not doing that. Some of the medications on the list are standard pain medications, I agree. So there is no particular need to put them in to a list for ME - you just follow normal practice. But a good number of the drugs suggested, like duloxetine or pregabalin are not useful for general...
  18. Jonathan Edwards

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    It has to be approached like any other illness rather than a playground for quacks. If we are nowhere near a target treatment then groups of doctors should not be pretending they know what to do.
  19. Jonathan Edwards

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    Well that is my point, really, they should be controversial since there is no good evidence for value in ME/CFS. As far as I know there are no relevant trials - at least for CBT there were trials. If pulse rate goes up during orthostatic intolerance that is probably a sign that it needs to go...
  20. Jonathan Edwards

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    Looking through the recommendations for treatment this looks like a muddle of unproven therapies of a sort that nobody should be recommending. At least NICE have used some sort of evaluation of evidence. This looks like old-fashioned 'clinical judgment' that should have been pensioned off fifty...
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