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  1. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    One point I just realised is that if someone is sitting up almost by definition they are at risk from aspiration because any gastric contents reaching the mouth will tend to fall back through the larynx. On the other hand for anyone flat, and particularly in the semi prone position preferred for...
  2. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    I am not sure there is anything very robust. But impaired oxygen extraction would suggest to me that the cells had received signals that inhibited their use of oxygen, not that oxygen supply was short. Short oxygen supply would show up on blood gas analysis or reduced blood flow.
  3. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    I don't really follow. I am suggesting that ATP is not being used because its use is blocked or not switched on probably via the balance of kinases. If ATP is still involved in some signalling that may be, but is a different matter. ATP may be a signalling mediator but it is not going to be a...
  4. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    There are lots of theories but I don't see those as ME. I see ME/CFS as a clinical pattern of illness that we want to find the right theory for. I would hope we could agree what that pattern is - focused on PEM at least. But it may be that there are members with really quite different symptom...
  5. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    Yes, that sounds right. I see at least two aspects to the immediate difficulty of doing something and with Sean there seems to be agreement that there is the third issue of pacing. The 'block' and the 'intolerability' aspects may seem confusing but I think that is how the central nervous system...
  6. Jonathan Edwards

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    Indeed, but that is a different issue. One thing that I intend to add in my updating of my Qeios article is a statement that the word 'functional' has no place in discussion of life-threatening malnutrition. And that will link in to a polite but firm critique of the RCP advice on feeding support.
  7. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    Because I see it as the central truth of the problem - and I doubt anyone will get anywhere until that is openly discussed. If the problem is portrayed as simply an impossibility of action due to lack of energy resources then variability in ability makes no sense. If it is based on a complex...
  8. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    My impression is that picking up problem weight loss is not the weak point. The failure comes in getting a strategy in place for coping with it. I am not sure how much more I can say on specifics. I don't have any evidence on which to base actually recommendations. All I can really recommend is...
  9. Jonathan Edwards

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    Yes, sure, everything is suspect, but if you spent a month as a neurology intern I don't think you would come away thinking that 'functional' problems, as defined operationally, do not exist. In the general population they are probably pretty uncommon but in a neurology service they are around...
  10. Jonathan Edwards

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    Yes, but I doubt many neurologists would say there are no non-epileptic 'seizures'. There will be true epileptic events with little or no abnormality found on EEG between attacks. But if they are typical clinically they are likely to be accepted as true epileptic attacks - certainly if there is...
  11. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    Surely this is a common situation. If I have severe pain in my back I cannot bring myself to do something that will exacerbate that pain however much I might want to. If I have vertigo I cannot bring myself to stand up in the knowledge that I would vomit yet again. I may be wrong but listening...
  12. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    But is it in fact Dr Weir's experience? I am not aware that Dr Weir has given patients IV saline. Maybe he has, but as far as I know without making any carefully controlled observations. I am afraid I don't think we can treat Dr Weir's 'clinical experience' any differently from the president of...
  13. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    I don't know anything, I am not claiming to. But I am suggesting that what is often assumed isn't known either. There is nothing to suggest a significant shortage of oxygen is involved in the vast majority of ME/CFS symptoms. There is no evidence for shortage of oxygen even in OI as far as I...
  14. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    I understand that - which is why I include in the concept of intolerance both a sense of intolerability and a simple impossibility to do things. The central nervous control system normally employs both mechanisms together. Pain prevents movement through the intolerability of the painfulness but...
  15. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    That would be my assumption. When we suddenly feel we cannot even stand up, or have to vomit, with 'gastric flu' that is not because of a sudden shortage of energy. It is a signalling system saying 'stop'.
  16. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    Discussion moved from this thread But the question is - what is 'exhaustion' in the context of ME/CFS. We have little evidence that it is actually depletion of energy reserves or a 'run down battery'. It certainly seems to feel like that but there is no shortage of oxygen or glucose and almost...
  17. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    It certainly seems as if there was no coherent plan, based on experience with ME/CFS patients, within the hospital. But it is not clear that Dr Weir's advice was well founded. The evidence for low blood volume is uncertain. There is no reliable evidence for benefit from IV saline, which, in...
  18. Jonathan Edwards

    Mitochondrial function in patients affected with fibromyalgia syndrome is impaired and correlates with disease severity, 2024, Macchi

    The problem is that for systems with complex regulation it is never that simple. Take my lawn mower. After being used for ten minutes it starts slowing down and speeding up and then conks out. The 'mitochondrion' there is the cylinder head where the petrol is burnt. But the problem is a fault in...
  19. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    It involves putting a tube through the skin into the stomach. It is done endoscopically. I am not sure what more one can say.
  20. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Sepsis from TPN is a very real problem. Septicaemia is frequent and can be fatal. There would genuinely be a balanced argument about which was more likely to lead to death TPN or no TPN. But my understanding is that for PEG (enteral feeding through a tube into the stomach via the skin) is not in...
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