Characteristics of patients with motor functional neurological disorder in a large UK mental health service (2019) O'Connell, Wessely et al

I think this is actually quite unlikely. Quite a lot of people with MS may get ignored because signs are subtle or absent but then they are likely to be categorised as hypochondriac or anxious, not as FND. FND refers to the specific situation where the patient claims to be paralysed but physical examination shows that the nervous supply to the muscle and the muscle itself are working normally. Moreover, the apparent paralysis is not mild in such cases. It is usually complete, so the discrepancy is gross.

In my view it is just as bad to diagnose a psychiatric problem as a non-psychiatric one as the other way around. Both can lead to unnecessary death.

What does worry me about the paper is the suggestion that FND is common. Maybe the Maudsley thinks it is common because they get all the difficult cases referred there. In my experience it is pretty rare, but there is a real problem that has to have some sort of name like this. I am not sure it is useful to consider it a psychiatric problem though, especially when psychiatrists seem not to have a clue about such things.

I

 

Does that not at least suggest that they are not being careful in their diagnosis of FND.

It sounds like a diagnosis should be fairly straightforward. But as psychiatrists I have no faith that they are limiting themselves to only this category. I think I've seen this somewhere before.

Also, I feel like there is a catch-22 for them in all this.

If so many people are suffering from FND's and psychiatry has a solid treatment for this (variations of CBT) then they can expand their empire & reap rewards but what happens if as a result of contaminating diagnoses of FND with other illnesses those other illnesses become ever more common.

There will come a time when people who believe they are secure in a group of those who would never ever succumb to this category of illness will and there will only be CBT for them. For a time these few will be tragically hidden away but over time I expect they will be the ones lobbying for change.

I certainly hope we don't have to wait that long and find out.

 

@Jonathan Edwards

Thank you for your comments and explanation re FND - much appreciated. As you say, some with MS may be misdiagnosed, as hypochondriacs or anxious.

Early on with ME, I met someone initially diagnosed with "cfs" who was later diagnosed as a MS patient. The unfortunate part about these circumstances, is of course, that these people for whom there are treatments, don't receive any until they are correctly diagnosed. Without treatment they may further deteriorate.

Thank you for commenting regarding concerns about labeling FND psychological. It seems some in the mental health movement are relentless in finding conditions lacking clear causes, which they believe they can claim are psychological.

 

Not particularly. They probably advertise a tertiary referral centre so all the diagnosis gets made elsewhere and if everyone in the London area ends up at the Maudsley there will be quite a few with FND.

 

The Mayo Clinic seems to think FND = Conversion disorder. I think that is as significant as it is disturbing.

It may be time to deep-six that label.

 

FND is not being used for profound paralysis. It has been widened right out and many people with ME are being rediagnosed with it. Apparently over half of all people who attend neurology have no neurological disorder and are now told it is functional. People with ME have lots of neurological symptoms but if your doctor doesn't "believe" in ME as a neurological entity it must be FND.

Because the brain isn't complicated at all is it?

It is a new telling of nineteenth century hysteria.

People who went to eye clinics complaining about eye pain and dry eyes were often dismissed as nothing wrong as everything looked normal to the doctor. Luckily the psychs didn't notice this field and doctors who cared about their patients rather than money decided to believe them. Last year a second large symposium was held following up one 10 years before. The research has shot ahead and treatments are being tried and a lot of basic biology has been pieced together.

Psychiatry being involved with FND has set the field back 100 years. Thoughts can't cause major paralysis. It is such a strange notion that I would need very strong detailed evidence of the process before I believed it more likely than alien abduction.

 

Hard to see it differently than the equivalent of "God works in mysterious ways".

True, the brain is complicated. No, that does not mean anything. The same thinking for "some people fake illness, therefore surely you are". No, it does not follow. This is logical fallacy.

The whole is more than the sum of its parts.

 

I'm concerned about this, too. I first thought maybe some people are reaching for FND to give ME symptoms a new label and a new trial. But I found so many similarities in the language describing FND and in the PACE adherents' language, that I think that it might just be a common ground of doctors dealing with patients whose illnesses they cannot understand and therefore push them into categories they are familiar with instead of being curious what might cause the symptoms, assess the symptoms properly and find new means to investigate them.

Actually, a neurologist specialized on FND, Jon Stone, already included ME in his field of expertise. (There might be another thread already about him, but I couldn't find any) :

Stone, Jon: Functional symptoms in neurology, Practical Neurology 2009;9:179-189, p.185,
https://pn.bmj.com/content/9/3/179

(full text accesible via: https://www.neurosymptoms.org/download/i/mark_dl/u/4013612269/4634740840/Stone - Bare Essentials Functional Symptoms.pdf )

Jon Stone runs the website neurosymptoms.org, where he writes:

https://www.neurosymptoms.org/limb-weakness/4594358036

More Quotes from https://www.neurosymptoms.org/fatigue/4594358000

(I will come back to this thread with some questions in portions.)

 

Agreed. However, as others have pointed out, the term 'functional neurological disorder' sometimes seems only to replace the name, but not the concept of conversion disorder. In addition, the cited figures might indicate that many more conditions than FND in the strict sense of the term are being subsumed under this label?

SW et al: "who had an ICD-10 diagnosis of motor FND (mFND) (limb weakness or disorders of movement or gait)"

This seems to be a weaker definition than the one you proposed?

So, would you say, that motor fatigue or fatiguability would usually not be subsumed under the FND category? Or does this depend on the question whether the physical examination was normal? (This actually seems to be possible in pwMS: that the measurable and typical signs seen in a neurological examination presenting during a flare can regress completely, but they still experience motor fatiguability).

And if the physical examination of someone with motor fatiguability is normal at a time when he is not fatigued, would it make sense to examine the nervous supply to the muscle and the muscle itself during the phase when motor fatigue occurs?

(One of those unedited posts from my drafts folder, anticipated apologies in case of being redundant.)

 

My comment was made in a particular context and not intended to be an overall definition.

I don't think fatigue would come under FND because fatigue is not specifically neurological. Clearly there is an issue about how wide the FND net is cast and at least some people are casting it too wide. Meaningful FND is not one of the commonest reasons to go to neurology outpatients, as has been claimed by some. I have done neurology outpatients and although there were plenty of people with symptoms that did not indicate anything badly wrong there is no way I would classify them as FND. For me a meaningful use of FND is where there are clear cut symptoms and signs that look like those you would get with stroke or MS or peripheral neuropathy or myelitis but where the neurological examination and imaging or neurophysiology shows no structural change.

There must be something going on up in the brain in FND, at a very high level of processing, because the patterns of symptoms and signs can often look like things like epilepsy in a way that is hard to understand other than as some form of mimicry. Maybe there is an analogy with dreams. In a dream one part of the brain can conjure up complicated stories and present them as if real in great detail to another part of the brain that has no idea what is coming next. Maybe in FND something similar goes on. One part of the brain conjures up a 'seizure' that another part of the brain has no idea is going to happen.

 

But of course not ... so much easier to manufacture beliefs than to research real reasons.

 

I don't know if this is related or not, but just in case, here goes.

When our dog dreams she does as they usually do, her legs and body twitching quite a lot in a parody of running (we always assume). So it seems like one part of her brain is probably fully convinced she is running full tilt, whereas something must be inhibiting the lower level motor functionality ... otherwise all hell would break out in our house. In fact as I write this I wonder if sleep walking could be if the lower level motor functionality is not being inhibited properly. For me I see a parallel with software systems designed to drive hardware, but which can be set to run in emulation mode, where real hardware is not to be exercised.

 

also dont know if this is related... but there is something "new" ... not sure, but sort of "neuro training", "neuro exercise"

it may help with parkinson .. possibly others, too..

its like doing exercise in your mind... picturing walking the stairs, so walking them "in the mind"

im sure, that the mind is very powerful and may be able to cause symptoms, but then also help to resolve some.

what do ppl here think about "exercise mimetics" (hope its the right word).
its meds that shift "hormones" like after exercise, or something like that.
would be interesting to try ?

could any of these cause PEM ?

 

What's going on with the NICE "Suspected Neurological Conditions" guidelines?
They produced a draft (2017) but on the project website it says it is 'In progress', and they have just updated the stakeholder list (??)
https://www.nice.org.uk/guidance/indevelopment/gid-cgwave0800

(MEA and AfME are both stakeholders)
@Russell Fleming

 

Exactly. Studies like these cannot generalise anything about the underlying characteristics of patients, rather they reflect the referral and diagnostic biases in practise.

 

Trial By Error: A Letter to Psychological Medicine about Error in MUS Paper from Sir Simon and Colleagues

"I have previously documented that some of the leading experts in “medically unexplained symptoms” (MUS) have regularly misstated a core finding from a seminal study in their field. The study—”The cost of somatisation among the working-age population in England for the year 2008–2009”—was published in 2010 in the journal Mental Health in Family Practice.

The same mistake has been repeated in journal after journal, and at least a couple of these instances have been corrected. It has recently been brought to my attention by a shrewd observer that the venerable journal Psychological Medicine published one such study two years ago, with Professor Sir Simon Wessely as a co-author."

https://www.virology.ws/2021/04/13/...r-in-mus-paper-from-sir-simon-and-colleagues/

 

Oops! Can't be fixed now.

 

This happened to someone I know in Australia. They were not paralyzed, just had ME symptoms.

 

Trial By Error: My Letter to Professor Anthony David Asks Why MUS Experts Keep Misquoting a Major Study

...today I sent the following to Professor Anthony David, a neuropsychiatrist and the senior author of the Psychological Medicine paper. He previously was at KCL, along with Professor Murray and a co-author of the paper in question, Professor Sir Simon Wessely. Professor David is now at University College London.

https://www.virology.ws/2021/04/17/...hy-mus-experts-keep-misquoting-a-major-study/

ETA: Correcting the link.