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  1. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Why should we be so cruel? What is wrong with their current situation? The person has exactly the sort of support they need. They do not need easier employment, just some more support from junior staff which is precisely what they have been provided with. Before making suggestions like that...
  2. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    The whole point is that we have no idea. And we have to work with that and try to keep people afloat not knowing that. The NIH paper didn't seem to be able to agree with itself what process it was studying. The critical question is whether or not whatever else happening is causing the subtle...
  3. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I know what you mean but it isn't that simple. I have looked after people with 'FND' although I did not call it that. We do have information about these people. We know from long communal experience that a high proportion of people with certain patterns of presentation turn out over years not...
  4. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I am not suggesting FND is an appropriate category for ME/CFS - very much not. FND should cover people with specific neurological symptoms and signs that appear to be due to subtle brain dysfunction of a sort that does not progress to anything else. That diagnosis can of course be wrong and...
  5. Jonathan Edwards

    Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

    But all diagnoses are made up to some extent. They all represent imperfect and partial understanding of mechanisms and prognosis. There is a serious problem with FND, yes, but inasmuch as it indicates that the patient does not warrant open brain surgery which might leave them with a real stroke...
  6. Jonathan Edwards

    Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

    There is certainly a naïvety in the suggestion that there are known effective approaches but I think it is important no to confuse a whole range of different issues here. I can answer that - because patients say so from their 'lived experience'. I have come across socially people who are...
  7. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Whatever one might think about the diagnosis of FND there are people who have problems that at present get put under that heading because nobody has a clue where else to put them. Some of them have symptoms that look like stroke but clearly do not have the upper motor neuron problems that are...
  8. Jonathan Edwards

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

    I don' think that we should be judging people by what they study, though, @Hutan. Sarah worked in rehabilitation and would have come across patients with the diagnosis of functional stroke - as the paper says. I have only looked at the abstract but it looks pretty good. This is a situation...
  9. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I don' think that we should be judging people by what they study, though, @Hutan. Sarah worked in rehabilitation and would have come across patients with the diagnosis of functional stroke - as the paper says. I have only looked at the abstract but it looks pretty good. This is a situation...
  10. Jonathan Edwards

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

    I had not bothered to look at these. This is not even usable data. It is a series of 'qualitative' studies that tell us nothing more than, to quote one ' Staff were generally positive about the toolkit' If this is what is aimed at there is no justification for funding it. I am afraid it is more...
  11. Jonathan Edwards

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I don't think this is an issue of distinguishing processes but distinguishing effects. I think it is saying: 'all the symptoms that occur immediately or in less than 12 hours following the exertion are called exercise intolerance'. They may or may not be associated with a process that can also...
  12. Jonathan Edwards

    Does treating high blood pressure do any good?

    That there is a list of well known secondary causes of hypertension that all medical students learn. In my day we screened for those things that were reasonably practical - full physical examination, renal chemistry, chest X ray, etc etc.. Not sure what the guidelines are these days.
  13. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    As Hutan has indicated this may in a sense be a question we cannot really pose or answer usefully. One answer that comes to mind is that we have no reliable evidence it isn't but then we have no reliable evidence it isn't due to aliens. We have reliable evidence it isn't due to mobile phones...
  14. Jonathan Edwards

    The causes that aren't genetic or pathogenic

    I am not quite sure what you are trying to get at. I realise it is complex and counterintuitive. The world consists of fields that 'advance' through spacetime stepwise through 'excitations' or 'changes' that used to be called 'particles' but are more 'actions'. For any pattern of the fields a...
  15. Jonathan Edwards

    The causes that aren't genetic or pathogenic

    Not really. I am talking about a logical necessity that Einstein understood very well. A lot of people don't like it because it spoils intuitive realism. But as a physician aI am very aware that the representational nature of our experiences makes intuitive realism a very bad place to start...
  16. Jonathan Edwards

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I agree. PEM would still be just as much PEM even if the CPETs had been plumb normal. Fatiguability is a distinct concept.
  17. Jonathan Edwards

    The causes that aren't genetic or pathogenic

    I do think that three people in a family all getting ME at the same time must be significant, though. There is nothing in the immune model as I understand it that would explain that. But there are always surprises in science where a simple mechanism one had not thought of can explain something...
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