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

Absolutely and without any justification.
If FND is a useful label I don't think it can be applied to people without signs suggestive of a local neurological lesion, yet discordant.

 

I think we're talking about two different things, in a sense. What the FND experts argue--which is that pretty much everything the neurologists can't pin down is FND, including cognitive problems--and, on the other hand, what should be the case, which is what you've outlined. To say functional cognitive disorder is not part of FND is not, in fact, the case from the perspective of the gurus like Stone, Carson, Perez, etc. Since they have a whole literature now on how FCD is a huge and more recently recognized part of FND. The "rule-in signs" are things like coming alone to the appointment or being able to tell your story without hesitation for 90 seconds whereas people who don't have FCD/FND are more hesitant.

I misspoke (or mis-wrote). Obviously something is going on in the brain. But is it your understanding that the causal factors behind those subtle changes in the brain and cognition in LC and ME are necessarily starting in the brain? And if they are, why not call it FCD and decide it's a major manifestation of FND, as Stone/Carson claim?

Ok but the fMRI studies show different parts of the brain are engaged differently in people with and without FND. The argument is that these associations are causal--that the fMRI studies prove that these changes are causing the symptoms, rather than something else causing both the fMRI differences and the cognitive deficits. Is that your understanding?

It's easy to believe some people have symptoms that can't be attributed to specific or identiable lesions. But the FND category seems to be metastasizing in front of us. The numbers you cite seem understandable.

And "functional" should be a useful term. But "functional" and FND have come to mean something other or more than what you say should be the case in the normative sense. At least that's how it comes across reading the literature.

 

Not necessarily, and perhaps most probably not. They may be driven purely by peripheral immune signals or a mismatch in a regulatory process that involve both immune signals and neural signals.

The point for me is that FND covers a very specific group of people who have specifically neurological problems that show this discordance in presentation that suggests a local lesion but also is incompatible with known local lesions. That is what Hoover's sign is all about. Hoover's sign is only relevant to one very particular set of signs. There are others.

I fully appreciate that people like Stone are making a complete mess of all this and that they come across as 'gurus'. But I had lunch yesterday with colleagues who are familiar with all these groups of patients and have probably never heard of Stone and maybe not even of FND. Medicine is not run by Twitter, even if these days it might seem like that to people conversing on the internet. There is a huge problem with this stuff but the vast majority of medicine is done pragmatically by people who may be much more sensible - or may not. Amongst all that there is a group of people with this particular type of illness.

Or so a few papers say. The vast majority of my colleagues would not take these studies seriously. They know perfectly well that they might simply mean that people with a diagnosis of FND have different thoughts because they keep getting bullshit conflicting information from their doctors. These studies are not the reason for the category. There are also functional bowel disorders and functional respiratory disorders, in which nobody knows what is going on.

It seems that to you David, and it is a major problem that some medics are putting out this garbage but my colleagues would just smile and wink. Nobody much takes this sort of thing seriously. It is propaganda and everyone knows that. Just part of the disaster of disinformation that the Information Age has brought on us.

 

Ha! Well, that might be, but it seems that way to me as a smart, non-medical person because the Stones of the world are disseminating this stuff and the neurology journals are publishing these articles day and night. I don't see others writing/talking about FND. There's the world as it should be and the world as it is. In the world as it should be, "functional" would mean simply "functional." But that doesn't seem to be the medical world we're living in these days.

 

There is some stuff that is also transient. In MS the lesions have to be imaged at the right time to be seen, and a % will always be missed simply because of time. A bit similar to the bull's eye rash in Lyme, it's only visible for a few days and if it's a place the patient isn't looking, will not be showing it to a MD, once it's gone the evidence is forever missed.

A lot of people with LC are diagnosed with FND. In the recent LC conference one of the clinics gave it to half their patients. Frankly I think that most of FND is similar in root and cause to ME, caused by some precipitating factor, likely affecting the immune system, that usually resolves in time.

What's clear is that there is no way to verify any of this, which makes the "misdiagnoses are rare" all the more absurd. It's no different than asking students who finished an exam how many wrong answers they gave. They don't know. Working without knowing the answer is hard, this problem is quite similar to how neural networks are trained. Unless you give them the right answer, and you need to know it for that, they can't properly learn. Here no one knows the final answer, and the construct has extremely shady roots in 19th century mythology and bigotry.

 

I had to look that one up! Love the name chiffchaff. Who came up with that??

 

But Jo, it seems many people take this sort of thing very seriously indeed. You're talking about what FND should be if the category were used properly and appropriately. I get that that definition fits a certain cohort and can be fairly applied to those patients.

But that's not really what we're seeing, from what people are saying of their FND diagnoses. If it weren't being taken seriously, and people with brian fog or whatever weren't willy-nilly being diagnosed with FND, we wouldn't be having lengthy debates about the issue here. It certainly seems like over-stating things to say that "everyone" knows this flood of studies is propaganda.

I mean, it has an effect in the real world! They're training GPs to diagnose FND, and FCD as a a major subset, with positive signs that they claim or imply are essentially 100% specific for FND. Where are all the articles in the literature pointing out that much of this is, as you say, propaganda?

 

All this started some weeks ago when pseudonymous posters on Twitter said that the S4 forum and ME/CFS patients on Twitter deny the existence of FND and that this has been upsetting to them. I've personally not seen people on here suggesting that FND symptoms aren't real, though obviously I can't read every post. The issue that tends to be discussed is that an FND label in the medical record reliably results in future medical abuse by other healthcare providers who see the label and associate it in their minds with its sketchy DSM-III/DSM-IV history of hysteria/conversion disorder. The other main issue that tends to be discussed are the various pseudoscientific pathophysiological claims being made by the FND gurus, such as suggesting that emotions and childhood abuse are causing people's disability and that the way out of the disability is physiotherapy/rehabilitation.

Some of the comments on this thread are quite worrying. I hope that allegations of hurt feelings won't result in more censorship.

 

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.

 

of course!

 

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 then who are we to upset them.

I do take Sean's point that that cries of 'foul play' from PWFND may be primed by the very Beelzebubs that you mention.

 

Best I can tell it simply means "best we can do", similar to what "state of the art" means in technology: the latest and greatest.

Doesn't mean it's any good. In fact it could be awful, but it's the best that can be done by the best experts in the field.

But the clear connotation that makes it sound like "the best that can be achieved" is annoying as hell, especially in cases where nothing is actually confirmed and the science is basically at the "corner pub around a few beers" quality.

 

It sure is, but in psychosomatic ideology, they don't know the denominator so they simply divide by the numerator and voilà: 100% success. It makes sense if you don't think about it.

 

And we've seen attempts at creating a 'functional cognitive disorder', which basically takes over brain fog as yet another functional disorder, but there is only one functional disorder, and it's the conversion disorder. Hundreds of bottles, but it's all the same, uh, beer.

There are even attempts to pin other types of cognitive problems, such as after chemotherapy, after TBIs and so on. There may be MDs using this concept in a safe way, but they're all relying on textbook definitions and research that one way or another come down to the definitions used by the major quacks. This is why Stone's neurosymptoms website is so commonly referenced, even to patients. And it's the same fundamental error that causes clinics to push for GET-like, while reassuring patients that it's not GET, even though the evidence base they use is all GET, and PACE is still a dominant force.

 

I know you haven't denied that! I was just emphasizing the point. In general, I agree with what you've said here. I get upset when I understand that FND patients take what I write as criticizing them. And that's why I have often posted a well-written account by an FND patient to indicate that patients are really suffering with something terrible and confusing. I criticize the bad research--not patients. But it is in the nature of things that FND patients will not take kindly to people challenging the construct, no matter how gently it is phrased.

 

I remember reading about Hoover's and there are instances where someone with a proper neurological disorder have a positive one. Some conditions I have come across are MS, Ataxia and Parkinson's.
So it that's the case they cannot say it's 100% specific

 

Although there are visible structural changes. But one of the major problems is discriminating how much of the observed changes relate to chronicity and (powerful, long-term, multi-) antipsychotic therapies.

From Neuroimaging in Schizophrenia (2020, Neuroimaging Clinics of North America) —

They introduce with the following —

Also commenting —

Spoiler: Some more references for imaging in schizophrenia

Subcortical brain volume abnormalities in 2028 individuals with schizophrenia and 2540 healthy controls via the ENIGMA consortium (2015, Nature Molecular Psychiatry)

Cortical Brain Abnormalities in 4474 Individuals With Schizophrenia and 5098 Control Subjects via the Enhancing Neuro Imaging Genetics Through Meta Analysis ENIGMA Consortium (2018, Biological Psychiatry)

Progress in psychoradiology, the clinical application of psychiatric neuroimaging (2019, British Journal of Radiology)

The Limits between Schizophrenia and Bipolar Disorder: What Do Magnetic Resonance Findings Tell Us? (2022, Behavioral Sciences)

Neuroimaging at 7 Tesla: a pictorial narrative review (2022, Quantitative Imaging in Medicine and Surgery)

A whole-brain neuromark resting-state fMRI analysis of first-episode and early psychosis: Evidence of aberrant cortical-subcortical-cerebellar functional circuitry (2024, NeuroImage: Clinical)

 

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 neurology is likely specific for anything.

 

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.