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

Andy

Andy

Retired committee member
This scientific commentary refers to ‘The prognosis of functional limb weakness: a 14-year case-control study’, by Gelauff et al. (doi:10.1093/brain/awz138).

I would like you to imagine writing an ethics application for a new study. Let’s imagine that it relates to a common and disabling cause of neurological symptoms that is more frequent in females than males; often affects people of working age; is usually straightforward to diagnose; where time between symptom onset and diagnosis is correlated with outcome; for which there are treatments with some efficacy. Imagine that you propose a study where you will deliberately not tell people their diagnosis. Instead you...
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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
 
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??
 
I thought this was interesting.

If we seek to develop a care pathway for patients with FND, then it must turn the traditional ‘stepped care’ model on its head.

In this model, patients are seen by the lowest-expertise, lowest-intensity assessment and treatment service first, and can only access more expertise in assessment and treatment by repeatedly failing lower steps in the pathway.

This approach is clinically mindless, economically illiterate, and harmful.

Instead, we need to be bold in investing time and resources up front in a robust process of interdisciplinary assessment of the full scope of functional symptoms and associated comorbidities. Only then can one effectively triage patients into the most appropriate management.
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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.
 
Trish said:
So that would presumably scupper IAPT for FND.

He doesn't actually mention any supposedly helpful treatments, ...
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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.
 
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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.
 
the approach we have taken up until this point for patients with FND has failed, and failed catastrophically. But we can do something different. The ideal of a joined up, interdisciplinary service for FND, with sensitivity to mental health comorbidity and social influences on health and disability could provide both a massive benefit to the health of patients with FND and a model for services for others who are ill. This is a vision of a different, more compassionate, healthcare system
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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.
 
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strategist said:
"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.
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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.
 
Gelauff et al. show that the diagnosis of functional weakness by a neurologist is stable over time. Misdiagnosis is rare, and misdiagnosis rates are no different than for other causes of limb weakness.
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But Gelauff et al.’s data challenge us to do more than just make the diagnosis. Three of their patients developed a neurodegenerative disorder over follow-up. There is an interesting question as to whether functional symptoms in these three patients were triggered as part of the prodrome to a neurodegenerative disorder. This phenomenon has been highlighted previously in patients with Parkinson’s disease (Paree ́ set al., 2013). We know from previous work that 15–20% of individuals with a neurological diagnosis will also have FND (Stone et al., 2012).
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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...
 
Hutan said:
: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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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.
 
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.
 
Mithriel said:
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.
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Circular definitional unfalsifiable 'diagnoses'.

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