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  1. Jonathan Edwards

    Channel 4 News 19 February 2024: Features Clare Norton, mother of Merryn Crofts

    I thought it was very well done indeed. Merryn's mother, Sonya Chowdhury and Sean O'Neil were given the chance to be very clear and informative. The presenters seemed intelligent and sympathetic. The stuff on the history and politics was covered pretty well. I don't think one can ask for...
  2. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Anything from 5mg to 60mg daily and in those days maybe up to 120mg prednisolone equivalent per day for acute life threatening situations. Our trial compared 1000mg with 100mg given as three shots if I remember rightly. My memory from then and understanding since is that the high dose 1000mg...
  3. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Our experience with 1000mg pulses of prednisolone in lupus was that there was no advantage over standard dosage. As Trish says, I hope you are under close supervision. High dose prednisolone is quite high risk, the most common problem being major gastrointestinal haemorrhage.
  4. Jonathan Edwards

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    Sure, but the FND category can only increase the chance of missing stuff. I think it is reasonable to say that people with problems of this sort, on careful assessment, can be told that even though we have no real idea what is causing the problem in the majority of similar cases no progressive...
  5. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    That strikes home. But is it? The NICE guidelines were based on evidence of usefulness. I don't see that here. PEM is important because it flags up a particular disease dynamic - feeling illi with an aberrant time relation to exertion. That aberrant time relation is what makes it a useful...
  6. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    To my eye the questionnaire asks for far too much 'interpreted' information. With my limited experience of Longish Covid I am never really sure what made me worse or when or whether I am doing less than I would have done or whatever. I just feel knackered and too knackered to think about what I...
  7. Jonathan Edwards

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    It doesn't have to be. Stress is by definition a response to a threat. If the autonomic nervous system is screwed up by something like dysregulated cholinesterase (a bit like the screwed up AChR in myasthenia) then the effects could stop people in their tracks in the absence of any current...
  8. Jonathan Edwards

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    Yes, one can sympathise but I am pretty sure this is not being served up to the public in good faith. It seems that people with FND follow these threads. If they read this I would like them to know that I am not a patient sniping at someone else's disease. I am a professor of medicine trained...
  9. Jonathan Edwards

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    We will no doubt debate it at length next week!
  10. Jonathan Edwards

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Moved posts I have had access to the NIH intramural study report but it is embargoed until next week. We can have a full discussion then. I think it may be useful to examine their attempts to analyse brain activity and the role of sympathetic drive. I am not convinced so far that they are not...
  11. Jonathan Edwards

    Prevalent and persistent new-onset autoantibodies in mild to severe COVID-19, 2024, Nilsson et al

    I suspect that they have simply demonstrated that people with covid develop antibodies to Covid. Peptides are not a good way to look for autoantibodies of clinical relevance.
  12. Jonathan Edwards

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    If necrosis is significant it should show up easily on standard MRI. Muscle biopsy is an invasive procedure and suffers badly from sampling variation. Before doing more biopsies I think we should have a basic study of muscle by MRI after similar activity. There are other techniques using...
  13. Jonathan Edwards

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    Yes, I think it is important to take into account the fact that when categorising diseases, like animal species, it is very often combinations that are crucial. Having wings is pretty non-specific for creatures. But a four-legged creature with wings is unique - a Hippogriff. Insects have six...
  14. Jonathan Edwards

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    Yes, @dave30th, I liked the conclusion: presumably 'relevant mechanistic functional networks' means 'stuff that does that'. Good thing you were never obliged to believe in the Holy Trinity - one is three and three is one. Isaac Newton refused to and very nearly never got the stipend that...
  15. Jonathan Edwards

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    It sounds like that but in neurology a 'localising sign' is a sign that allows you to localise the cause to somewhere in the brain according to the rules of neurology. The rules of neurology mostly involve swapping sides! If the symptoms were on the same side we would be faced with an...
  16. Jonathan Edwards

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    'Localised' or 'localising' is a jargon term meaning more or less 'pointing to a lesion in such and such a place'. I think they mean that the signs fit with the CVA lesion - i.e. are on the other side, as usual.
  17. Jonathan Edwards

    UK: Open Letter: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

    I see this as a mistake. It probably will get no traction but I think it is muddying the waters for PWME. We have a protocol for ME, in as much as it is possible to create one. It is the NICE Guideline that a lot of people put a lot of hard work into. There are no other ME specific protocols to...
  18. Jonathan Edwards

    We found a major flaw in a scientific reagent used in thousands of neuroscience experiments — and we’re trying to fix it.

    And we have known that in spades since we started using monoclonals. I was the first person, as far as I know, in 1979, to use monoclonal antibodies to stain joint tissues in rheumatic disease. The problem was readily apparent from the start. And the reason was obvious. With traditional...
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