Functional Neurological Disorders - discussion thread

thanks! would love to see if you find. or I'll look. don't stress out about it.

Added: Found it. https://philpapers.org/rec/SYKMUS

 

I downloaded this originally for free from somewhere. Its annoying that its paywalled as many will have trouble getting it. There were other papers on the same topic by him though, not sure what all of them contained, but of those I found this one was the better one.

 

Sci hub link, https://sci-hub.se/10.1353/ppp.2010.0034

 

Chalder is not a neurologist but is very much in on this
https://www.s4me.info/threads/curre...-disorders-espay-et-al-2018.4446/#post-193896

 

If you don't have family support and can barely subsist, they say it's attention seeking. If you have a supportive husband, they say it's secondary gains (symptoms mean you can save face while shirking work and domestic chores). If the spouse is unsupportive, the symptoms are due to a bad relationship. Heads we win, tails you lose.

 

Oops, yes, fixed!

 

I'd never heard of Richard Sykes. Here's another article, specifically about CFS: https://doi.org/10.1192/apt.8.5.351

This is his bio:

Richard Sykes is the Director of Westcare UK (155 Whiteladies Road, Clifton, Bristol BS8 2RF, UK), a registered charity for people with chronic fatigue syndrome/myalgic encephalomyelitis. After taking a degree in Classics at Cambridge University and a PhD in Philosophy at Princeton University, USA, his earlier career was in university teaching and research in philosophy. Career changes led to social and community work and the establishment of Westcare UK in 1989.

 

Westcare merged with Action for ME in 2002, https://www.thirdsector.co.uk/two-charities-merge-form-largest-group/article/612394

 

[my bold]

This seems to be at the heart of the BPS "land grab". If you can't yet prove it is physical, then we will presume, and convince everyone we can, that it must therefore inevitably be psychological.

This is so much more akin to religious missionary expansionism than it is science. Which is maybe why the leading proponents seem to 'argue' their case more akin to religious zealots than as real scientists.

Note I'm only touching on religion here strictly as relevant to this, which I really do believe is the case. So please don't break forum rules by wandering off into more general religious discussion.

 

Of course the categories are updated now since most people don't really want to be caught talking of 'physical' vs anything else.

Now the assertion would be more like "If there is no objectively measurable pathology causing the condition, the cause is mental." - Although I don't think that's an accurate assessment of where many people stand:

There are conditions with no objective diagnostic test that probably almost nobody would claim are caused or 'causally perpetuated' by the person's thoughts - e.g. autism, schizophrenia, bipolar. Things like depression or anxiety disorder will bring out varied conceptualizations but I don't think you'll find a lot of medical people thinking it's all down to the person's thoughts, even if they might want to try to intervene at that 'level'.

Perhaps what is disconcerting to many physicians is when somebody presents with:
--debilitating 'non-mental' symptom(s),
--no objectively measurable pathology causing the symptom(s),
--and is rational - i.e. 'in their right mind' (even if they may also have a diagnosed psychiatric condition)

And if these conditions are met, many may then infer that it is some sort of rational, albeit misguided or maladaptive, thought process that is causing the condition:
--For PACE the conceptualization of CFS is that it is the result of rational thought/behavioral processes stemming from the erroneous belief that they symptoms are a sign of serious disease rather than normal symptoms resulting from deconditioning.
--In idiopathic chronic pain it is catastrophization, a rational but maladaptive thought process, that makes symptoms more intense and debilitating when the patient should only be experiencing normal aches and pains.
--etc.

This is actually quite disturbing because it allows an infinite 'land grab' for cognitive behavioral therapy:
--Many illnesses have common associated symptoms with no direct pathological explanation, such as fatigue. So now all of those symptoms are up for grabs to be explained by faulty beliefs or catastrophization
--For the symptoms that are explained by pathology, if the doctor finds the intensity of the patients reported experience to be inconvenient and bothersome, they can put it down to catastrophization, as well.

Also many will probably mix in the notion that, although the person is outwardly rational, there must be some subconscious/suppressed emotional conflict contributing. So the patient is both causing their own problems with their rational thoughts, and is too hysterical to be a reliable reporter of their own experience. Or something.

 

I have not been back to check, but my recollection is that Westcare and Richard Sykes featured prominently in the correspondence with Mansell Aylward in the period 1991 to 93, as shown in the National Archives papers. Progress seemed to be made> Somehow that was all turned around after 1993 in circumstances which are not clear.

 

Trial By Error: Some More Thoughts on Functional Neurological Disorder

Last week I wrote a post on some of the signs used to diagnose people with “functional neurological disorder” (FND)—the phrase that has largely supplanted “conversion disorder” to describe neurological symptoms with no identified organic cause. In that post, I should have been clearer that I do not question whether people experience these symptoms. There is obviously a large group of patients with extremely disabling conditions that remain undiagnosed and in many cases likely cannot be diagnosed through current medical technologies.

My concern is the longstanding insistence of psychiatrists and neurologists that these patients have no physiological dysfunctions that could account for the symptoms, and that the symptoms were therefore psychologically induced–whatever exactly that would mean.

 

Interesting about the neurosymptoms website on FND that the author of the website (Jon Stone-Scotland) is co-author of a review that acknowledges that neuro symptoms of unknown origin are a hardware and a software problem yet writes on his site explanations of a software analogy only.

Review: https://www.sciencedirect.com/science/article/pii/S2213158219301482

Neurosymptoms website: https://www.neurosymptoms.org/

 

Interesting that there were a few responses on Twitter from some of the FND accounts who still don't understand (or deny) that what David is talking about is what the FND people think, not what David thinks it is. They don't pay attention to how they describe it among themselves, how there is no difference between FND and the old concepts of hysteria, just a rebranded packaging.

I guess it must be confusing to have people lie about acknowledging their suffering, finally paying attention to it, so they focus on the pretense, not the actual substance. Not worth debating this, but it's one of those examples that show the problems with deception, even outright lying, in medicine, how it can be abused with ill-intent, to deceive patients into swallowing ideological BS.

 

The FND people on twitter have so far said nothing of any substance as far as I can see.

It's rather hard to say anything of substance in support of the FND paradigm because it lacks any.

 

There should be a term for "neurological symptoms that we cannot diagnose at this point," and "functional neurological disorder" is theoretically as good a phrase as any, just like "medically unexplained symptoms" would be fine if it weren't misused to mean "medically unexplainable symptoms."

but there's no point in calling "psychogenic non-epileptic seizures" a form of FND and then say you're not calling it psychogenic when you're still calling it PNES.

 

I wouldn't be too hard on them. Many have suffered major abuse just like ME patients.

 

This.
Many of Jon Stone' s patients are happy to have a diagnosis that sounds " real" after being fobbed off and gas lit. They seem completely unaware re the doublespeak aspect.

He seemingly has a very empathetic manner, which if you have been treated abysmally by medics previously would have an enhanced effect.

 

The FND field seems such a mess that I think it's very difficult to blog on if you haven't first put 20,000 words into explaining your definitions of all the terms you're using. Any simplification is going to be seen through the reader's starting assumptions, and you can see that happening with some of the people missing the point of Tuller's piece.

I thought some of the phrasing could end up playing into prejudices some in academia have about PACE critics, eg:

Doesn't that imply all psychiatrists and neurologists have insisted that? When peoples' cognitions are a result of the physical functioning of their brain, just as a PC's software is dependent on the physical functioning of it's hardware, doesn't this sort of concern risk getting bogged down in the sorts of semantics that gets in the way of raising concern about the way patients are/have been being treated?

The first blog read like just a quick piece, pointing out that some seemingly exaggerated claims were being made about the value of some of the positive signs for FND that neurologists were being trained to use but, partly because it's so difficult to get all of the language about FND exactly right and clear, that seemed to be read as an attack on 'FND' as a diagnosis when some patients feel protective of because they believe it helps them get better treatment. I think it's going to be very difficult to avoid these sorts of misunderstandings without writing at a length that will put off most blog readers.