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Functional neurological disorder: an ethical turning point for neuroscience, 2019, Edwards

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Sep 12, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    Paywall, https://academic.oup.com/brain/article-abstract/142/7/1855/5524853
    Sci hub, https://sci-hub.se/https://academic.oup.com/brain/article-abstract/142/7/1855/5524853
     
  2. Lidia

    Lidia Senior Member (Voting Rights)

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    Loved it. Earnest compassion.
     
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  3. duncan

    duncan Senior Member (Voting Rights)

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    Can't read it, but Oh Dear, not the same Mark J. Edwards that believes in Functional Cognitive Disorder, ie no organic cause, in CFS and fibromyalgia??
     
  4. Trish

    Trish Moderator Staff Member

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    I thought this was interesting.

    So that would presumably scupper IAPT for FND.

    He suggests the care pathway for people with stroke is a good model.

    He also says those with FND who have pain, fatigue and cognitive problems have the worst outcomes - do you think he means ME?

    He doesn't actually mention any supposedly helpful treatments, but at least he says neurologists shouldn't just diagnose FND and discharge the patient, but should follow them up. And he does seem to be suggesting some level of care.
     
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  5. duncan

    duncan Senior Member (Voting Rights)

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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Oh but he does - if you look at the citations. Basically he is echoing Wessely's concern that all his patients will be sent off to cheap services instead of what ought to happen - imply an expensive multidisciplinary team and get them to decide to send the patient to trudge Chalder (or her successor).

    If I had any reason to think the evidence for benefit of CBT in FND was any better than PACE (maybe it is PACE) then I would reserve judgment. But I don't really have such a reason.

    I agree that following people up and taking them seriously is a good idea but I think it wold be better if that was done by a physician with humility about their own ignorance rather than a team of people who probably come and go every nine months.
     
    Last edited: Sep 12, 2019
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is the citation point:
    Another answer is that the available evidence indicates that specific treatments for FND coupled with careful selection of patients work well: effect sizes are often very large when judged by the standards of drug trials for similarly disabling neurological disorders (Goldstein et al., 2010; Nielsen et al., 2017).

    But the citations are to a 'pilot study' and a 'feasibility study' only.
     
  8. strategist

    strategist Senior Member (Voting Rights)

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    "Let's bring in mental health and social influences" is approximately what they've always done. The historical view was that functional neurological symptoms were caused by a conversion of emotional distress and trauma into physical symptoms.

    You can't treat effectively if you don't understand the cause, and conversely, if you continue to fail patients catastrophically that is a clear sign that what you're doing is wrong.

    They should try something that's never been done before: admit that you have no idea what is going on and that FND are beyond current scientific understanding and that historical views were an error and did not lead to understanding or an effective treatment. Then you can get to work on trying to figure out what's really going on instead of trying to make the same old Freudian ideas work under a new disguise.
     
    Last edited: Sep 12, 2019
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Pretty remarkable that he notes that the current approach is a failure, very true, then suggests more of the same approach as a solution. Which raises the question of what in his opinion is the current approach and how is it that he is clearly unaware that it is obsessed and sabotaged by obsession over some neo-Freudian magical psychology?

    Although it isn't right to say the explanation is beyond our scientific understanding, truth is the efforts so far have been so mediocre and aimless that it's not even fair to say a genuine attempt at finding a cause has even been tried, with far too much opinion and ideology. This isn't like nuclear fusion where billions have been spent with smart people actually taking charge and given appropriate resources.

    The lack of effort, leadership and funding have guaranteed the current disastrous outcome because of this weird attachment to the usual rare breakthrough by a lone researcher accidentally paving the way. At least we can agree that it's a massive failure. But that implies that the current approach has failed, not that more of it is the solution.
     
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  10. Hutan

    Hutan Moderator Staff Member

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    :banghead:
    There's hardly ever a problem with misdiagnosis, because if a patient diagnosed with FND later develops some more overt neurological disorder, then they have two conditions...
     
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  11. Sean

    Sean Senior Member (Voting Rights)

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    I wish I had the luxury of being able to simply redefine my way out of my health problems.
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Uh, that's twisted. Same idea behind the "relation" with ME psychiatric comorbidities of depression and anxiety, literally pointing at their own misdiagnoses as evidence that they are always right. Invalid diagnoses are never removed, therefore they stand the test of time. If you never count your mistakes, it's easy to claim 100% success. As science goes, this is exactly as valid as videos that took 1,000 failed attempts and only kept the one that succeeded. Got it on first try!

    Once again, the issue is why the hell is this allowed? Quacks. Dime a dozen. Yadda yadda. But how is it that this practice is accepted as valid evidence? It exposes so many flaws in the system it's hard to imagine that anything at all is reliable if things like this are common practice.
     
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  13. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Talk about confirmation bias! The diagnosis remains constant because they miss the same thing all the time. If you decide acne is a sign of a mental condition then every time you examine someone with acne you will rediagnose that mental condition and think it is a robust diagnosis.

    Then to not realise that if 15 to 20% of people need rediagnosed when they develop a recognizable neurological condition means FND is rubbish, well.
     
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  14. Sean

    Sean Senior Member (Voting Rights)

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    Circular definitional unfalsifiable 'diagnoses'.

    The perfect system for the lazy, incompetent, fraudulent, and downright psychopathic. :grumpy:
     

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