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  1. Jonathan Edwards

    Abnormal cerebrospinal fluid cytology in functional movement disorders, 2024, Serranová et al

    This is the crux of it. You can't. The point is that FND is NOT a disease category. It is a category that someone can fall under at one time and not at another. This particular example is unconvincing but in the case of our study of 'Benign Hypermobility Syndrome defined as having no internal...
  2. Jonathan Edwards

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

    It may be relevant that the MEA has signed up to the new organisation for Long Covid care providers under physical medicine and rehabilitation.
  3. Jonathan Edwards

    Abnormal cerebrospinal fluid cytology in functional movement disorders, 2024, Serranová et al

    But it is more subtle. 'Conditions' brings in the conflation again. ME/CFS is a clinical picture not explained by processes known to cause other identifiable clinical syndromes. It cannot be due to focal demyelination or depletion of dopaminergic neurons of the sort responsible for MS or...
  4. Jonathan Edwards

    Abnormal cerebrospinal fluid cytology in functional movement disorders, 2024, Serranová et al

    Correct. And that underlines the conflation we constantly make between mechanistic disease concepts, syndromal disease concepts and 'disease' disease concepts - the latter being some sort of intuition that there is some mysterious identity that is 'a disease'. When it comes to picking apart how...
  5. Jonathan Edwards

    Abnormal cerebrospinal fluid cytology in functional movement disorders, 2024, Serranová et al

    No, you can't get away with that. They said that these people were known to have FND. It had been proved that they had an illness with abnormalities. Or at least they were recruited on the basis that this was certain. They should have recruited people on the basis of some other definition -...
  6. Jonathan Edwards

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

    Well, for seizures, most standard grand mal epileptic seizures are idiopathic. So the FND ones couldn't be called idiopathic seizures.
  7. Jonathan Edwards

    Abnormal cerebrospinal fluid cytology in functional movement disorders, 2024, Serranová et al

    These patients had 'mostly sleep disorders'. Goodness knows whether anyone outside the Czech Republic would diagnose them as FND. And if there were no differences in CSF protein levels it is a bit difficult to know what to make of cell population differences. And who were the 'clinical...
  8. Jonathan Edwards

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

    No doubt he still thinks the same. But physicians of all stripes find it useful to use 'functional' to mean all shades of things. And of course if you are biopsychosocial like Sharpe he would deny that it could possibly mean psychological alone. It would have to mean a bit of bio and a bit of...
  9. Jonathan Edwards

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

    I don't think it is as simple as that. The 'functional' term was introduced widely in medicine to cover problems without an identifiable structural cause. Many physicians found it useful to cover patients they thought had a psychological basis but the term was also used by physicians who had no...
  10. Jonathan Edwards

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

    I think there is a significant difference. 'Conversion disorder' explicitly describes an illness in which your leg gives way because you cannot get rid of the bad thoughts due to being bullied by your elder sister when you were four. Whether or not all the mates in the pub know that, some...
  11. Jonathan Edwards

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

    "The information gained from this project and the toolkit will provide the essential bedrock for any effective change to clinical practice and service development." I wonder where that sentence comes from. It sounds like a selling point in a project application or, if not that a selling point...
  12. Jonathan Edwards

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

    I agree in principle and do not underestimate the harms. The only problem is that there is no 'zero' harmless option available to the community as of now. The 'harms of the FND label' have to be interpreted as 'how much more harm you get with the FND label than with X' where we have to know...
  13. Jonathan Edwards

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

    It's Mr Bloggs in fact and I know him well and he is very happy.
  14. Jonathan Edwards

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

    Well, imaging findings may have changed in recent years but this is talk of meta-analysis, suggesting that these findings aren't actually any use on individual patients so not diagnostically relevant? And as you say the statistical changes may be secondary.
  15. Jonathan Edwards

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

    A Hoover's sign in isolation would mean nothing. It is rarely used, except in cases where other signs do not point consistently to a clear explanation. If a patient had asymmetrical reflexes, cogwheeling or an upgoing plantar response a Hoover sign would be pretty irrelevant. No one sign in...
  16. Jonathan Edwards

    CAR-T therapy

    Probably right but I would be careful about using oligoclonal bands as an endpoint in the shorter term (less than a year). The kinetics of response is likely to be very complex and in most patients the clinical aim is to prevent new demyelinating foci. Nobody knows what determine those but it...
  17. Jonathan Edwards

    Closed UK: DecodeME updates, was recruitment thread.

    Good programme. Well done Chris and the lady with ME.
  18. Jonathan Edwards

    Closed UK: DecodeME updates, was recruitment thread.

    If that's 18,000 data points it is very encouraging. I doubt the difference from 20,000 is going to be statistically critical. It is also quite interesting to see the numbers that are achievable as a very indirect index of prevalence and diagnostic rates etc.
  19. Jonathan Edwards

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

    I have at no point denied that David. I have no argument with you on that. I have been pointing out that if some, maybe just a minority, of physicians and patients find a sensible usage of FND keeps the patient in a job and lets them enjoy a pint in the pub with friends without feeling mocked...
  20. Jonathan Edwards

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

    The bird of course. It sings: Chiff chaff chiff chaff chiff chaff chiff chiff chaff (just to catch you out at the end). The Iberian chiffchaff on the other hand makes a balls-up of the whole thing.
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