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  1. Jonathan Edwards

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Not so sure after listening to my old music teacher who survived a Japanese death pit with a smashed femur. I suspect Japanese soldiers were a bit like Bart's men. Peter Denton White was almost but not quite a Barts man, being at QMC. It was said that; You can always tell a Barts man. But you...
  2. Jonathan Edwards

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    Clearly muscle isn't exposed to light but yes we have detailed studies of muscle changes for 48 hrs after exercise. The UCL muscle unit did biopsies after exercise. But there is a very stereotyped resolution time frame. PEM doesn't do that I am told. And of course on 2 day CPET normal people do...
  3. Jonathan Edwards

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    I have no doubt that fatigue after car travel is due to continuous muscle contractions - if the trip is long enough I specifically have neck ache and the neck muscles are going to be working the hardest unless you have an aeroplane pillow. But that is something quite other than the sleepiness...
  4. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    Nobody is going to fund 'we intend to make a whole load of measurements and hope someone else can figure out what it means. More seriously, the design of the sensors is going to need careful thought in relation to what is going to be analysed.
  5. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    I think it may have to come from completely objective evidence from actimetry. Not just measures of periods of exertion but measures of subsequent reduction in activity. You might say that this would never show anything - but that is what Sarah Tyson has said, probably because it doesn't suit...
  6. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    That part yes, but the analysis of the data would require both detailed clinical insight and high level mathematical method knowledge.
  7. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    I think Fluge and Bella have tried to make a start on this. But you need investigators who understand the point of the exercise. I often wonder if anyone not a member of S4ME has that understanding. We are beginning to see young scientists who want to get to grips with ME/CFS but as for...
  8. Jonathan Edwards

    The Concept of ME/CFS

    From reading the threads I would say it was no where near as stereotyped as that. And what is 'a certain threshold'? Is it defined in a circular fashion as that which gives PEM? In my article I make it clear that something about the time course of worsening is what makes ME/CFS a concept that...
  9. Jonathan Edwards

    Could an exemplar specialist unit be set up for severely ill PwME?

    Traditionally it was the norm. We all know the centre names: Brompton, Queen Square, Rheumatic Diseases at Bath, Birmingham Accident Unit, Royal National Orthopaedic. Almost all trainees in a specialty wanting to become consultants worked for a year or more in these exemplar units. Then in the...
  10. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    I was thinking of that when I wrote that! A surprising number of people volunteer for 2 dy CPET studies it seems. But the studies never seem to test for what symptoms people have after day 1. If I had bad PEM I would say no thinks to day 2. But I wouldn't recommend that approach anyway. The...
  11. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    I was specifically referring to the idea that anaerobic thresholds are crucial. I don't think we have any evidence for that. More generally a reduction in output on CPET on day 2 is interesting but we don't have good reason to think it is what makes people feel worse.
  12. Jonathan Edwards

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    I haven't heard that other than from on for two members. Sleep and lying flat course make a face puffy from a combination of gravity and immobility.
  13. Jonathan Edwards

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    Yup. We use UV to study vascular activation this way. The skin goes red after a few hours, like sunburn.
  14. Jonathan Edwards

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    Are we sure this is not sleepiness. Sleepiness with car vibration is surely something lots of people are familiar with. Both I and my wife fall asleep in a vibrating car but not in a train. The sleepiness is irresistible but nothing to do with tiredness. And of course some people feel sick with...
  15. Jonathan Edwards

    Could an exemplar specialist unit be set up for severely ill PwME?

    I think it is, simply because just telling staff to be more considerate about light and sound is not enough. There needs to be a deep understanding of the problem. It has taken me ten years on the forums to get to grips with the reality. No local staff will be in a position to care for one of...
  16. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    It does but I don't think that is actually why it is tiring. We assume that we are tired by energy expenditure but actually we probably aren't. We are tired by something much more complicated we do not understand. When I was doing athletics and using up energy either fiercely in 100 yard sprints...
  17. Jonathan Edwards

    Immune exhaustion in ME/CFS and long COVID, 2024, Eaton-Fitch et al.

    There seems to be the usual confusion here between genetic studies of HLA-DQ (which alleles you were born with) and gene expression studies in active cells - which are completely different issues. HLA-DQ is present on antigen presenting cells as just part of their make up. I cannot see any...
  18. Jonathan Edwards

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    It may be in a sense. And of course suitable side rooms are available in all hospitals. What is lacking is a team of people with the expertise to make use of those rooms wisely for people with ME/CFS. I am interested in the suggestion that the referral to St Mark's is more about providing some...
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