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

Jonathan Edwards said:
Cognitive things like brain fog are not part of the definition of FND.
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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.

Jonathan Edwards said:
But cognitive deficits are obviously due to subtle changes in the brain.
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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?

Jonathan Edwards said:
The MRI studies are about proving theories in research.
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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.
 
dave30th said:
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?
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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.

dave30th said:
Ok but the fMRI studies show different parts of the brain are engaged differently in people with and without FND.
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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.

dave30th said:
But the FND category seems to be metastasizing in front of us.
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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.
 
Jonathan Edwards said:
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.
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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.
 
Hutan said:
But things are not as clear cut as that. There are papers that throw a lot of doubt on the accuracy of diagnoses of psychogenic seizures. And, in a post further back in this thread, I referred to a paper on neurogenic stuttering:

Neurogenic Stuttering: Etiology, Symptomatology, and Treatment, 2021


The paper concluded that


That paper actually supported the idea of a category of psychogenic stuttering as well neurogenic stuttering. The criteria used to distinguish the two sorts of stuttering included these predictable and concerning items:



For goodness sake, "after a short period of therapy rapid and satisfactory progress is noted" as a criterion for psychogenic causation. Perhaps some swelling went down and a bit of the brain was able to function properly again. Perhaps the patient just wanted to say something encouraging to the therapist. Perhaps the therapist just heard what they wanted to hear.

Health care systems get stuff wrong. They use the wrong sort of scans to see things, the person who looks at the scans was distracted. Yes, clinical laziness, a lack of money for scans, overworked staff. A family member of mine was diagnosed with a stroke last year - two months later someone had another look at the scan, ordered the sort of scan that showed the problem better and worked out it was something else that could be treated. I've spent weeks and weeks in hospitals over the last six months supporting the family member; a lot of the young doctors are clearly floundering around, with some of them making up random stuff to cover over their lack of knowledge.

Even with meticulous assessment, there are some causes of neurological impairment that still cannot be reliably picked up non-invasively. Given that, that idea that FND diagnoses must always be made confidently (in order to cure the patient) is unethical.
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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.
 
Jonathan Edwards said:
Nobody much takes this sort of thing seriously. It is propaganda and everyone knows that.
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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?
 
ukxmrv said:
I would agree with that to an extent. On the Facebook groups I belong to there are FND patients who suddenly appear from nowhere and post enthusiastically.

They are similar to the posts from Lighning Process accounts in that they use the same words and refer people to the same FND website.

There is no intention to discuss research or to engage with other patients diagnosed with FND who go on to be re-diagnosed with other medical conditions that can be treated.

It reminds me of the 'death threats' claim. We should consider the possibility that some of this is coming from somewhere.

There might be a reason why some FND people are joining Facebook groups for other medical conditions.
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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.
 
dave30th said:
I mean, it has an effect in the real world!
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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.
 
Hutan said:
What's with this 'gold-standard' stuff? It's like it is from a BPS playbook - someone has said 'how can we convince people that we are really right?' and someone else has said 'keep repeating 'gold standard''.
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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.
 
Eleanor said:
But there are NHS neurologists right now trying to put a FND diagnosis on patients who present with brain fog and fatigue, without any of the signs you list (I've encountered one myself within the past six months and heard of others). So either they do think it's appropriate, or they're just cynically misapplying the diagnosis, which they presumably wouldn't do if they thought it was a meaningful one where an error could have repercussions. Either way, they're not using a working definition of FND which fits that specific and useful category you describe.
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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.
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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.
 
Jonathan Edwards said:
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.
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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.
 
Eddie said:
In that specific context I understand the use of FND as label. My only pushback is on the implication about causes and on the misuse of that label. I have the same criticism of the people running around saying POTS is an autonomic nervous system issue when we don't know that is the case.

My only point in saying "I don't think a subtle disfunction of the brain's software is an illness" was the part about a disfunction in the brain's software. This is how FND is portrayed and implies that the issue is somehow psychological in nature. In schizophrenia and paranoid psychosis no one suggests that this is an issue with the brain's software. We don't know the specific cause, but from what I understand there are proposals involving issues with dopamine and glutamate as well as some subtle structural brain changes. If the prevailing discourse was that FND was due to a similar mechanism that would be fine, but instead we get these vague brain software analogies. Imagine if the NIH said this about people with schizophrenia: "Someone with FND (schizophrenia) can function normally, they just can't at that moment."

If the Hoover's sign accurately indicates that there are no structural lesions then that is a useful test. But whether the Hoover's sign is evidence of some common FND pathology I am not so sure. It could be the case but as you mention that isn't the goal of the test.
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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
 
dave30th said:
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.
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Yes, there is a limit to how politely and gently one can, or even should, make a criticism of bad practice.

I have always tried to make it clear in my criticisms of the grand FND project that it is the pros I am taking aim at, not the patients, for whom I have a lot of sympathy and whose symptoms and suffering I do not dispute at all.

That said, to the extent that those patients ongoing uncritical defence of FND and misrepresentation of my views hurts me and threatens the modest (though critical and very hard earned) gains we have made, then yes I will certainly be having my say about that.

Also gets up my nose a little that a lot of what we have achieved is likely to help protect FND patients from exploitation and mistreatment at the hands of medical fanatics. They might want to consider that before slagging us off again.

ToneAl said:
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
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I find it very difficult to believe that a single sign is definitive, certainly in this case.
 
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Jonathan Edwards said:
Schizophrenia is not tied to structural change
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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) —

Brain structural abnormalities are widely reported in schizophrenia with large-scale meta-analyses detecting a smaller hippocampal volume in patients compared with controls, followed by smaller amygdala, thalamus, nucleus accumbens, and intracranial volumes, as well as larger pallidum and lateral ventricle volumes. 9 Individuals with schizophrenia also have widespread cortical thinning and a smaller cortical surface area, with the greatest effects observed in frontal and temporal lobe regions. 10 Differences in cortical thickness are found to be more regionally specific, whereas cortical surface area effects are more global. 10 Cortical thickness decreases are also more pronounced in individuals receiving antipsychotic medication and negatively correlate with medication dose, symptom severity, and duration of illness. 10 Advances in neuroimaging methods have led to a dysconnectivity hypothesis of schizophrenia, whereby the disorder may involve abnormal or inefficient communication between functional brain regions 11 contributed by abnormalities in the underlying white matter connections.
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diffusion tensor imaging allows for the in vivo study of white matter microstructure. Diffusion tensor imaging studies of schizophrenia typically report lower fractional anisotropy (FA; a value ranging from 0 to 1 that reflects the degree of freedom for water molecules to diffuse in all directions) in patients compared with controls, typically in the fiber tracts connecting prefrontal and temporal lobes. However, recent meta-analytic indings suggest that FA decreases are more widespread in schizophrenia, affecting almost all major white matter regions with largest effects observed for cortical–thalamic and interhemispheric tracts, including the corona radiata and corpus callosum.
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They introduce with the following —

Schizophrenia has been increasingly viewed as a disorder of brain development. 4–6 Abnormalities in early brain development, around or before birth, as well as late developmental derailments around or before the onset of psychosis have been proposed. It has been suggested that programmed pruning during adolescence may be excessive leading to the emergence of the illness, consistent with observed reductions in cortical dendrite density. 7 Postillness onset degenerative processes may also be involved. 8 Neuroimaging studies have the potential to examine predictions generated by these seemingly contrasting models.
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Also commenting —

Although structural and diffusion imaging studies have shed light on the underlying neurobiology of schizophrenia, 14,18–20 the majority of these studies examine chronic patients and individuals taking antipsychotic medications, 21 with the exception of the milestone discovery of the brain structural deficit and symptom association in first-episode patients, as reported by Lui and colleagues.19 Therefore, it is difficult to identify the timing of brain changes and the effects of medication exposure. Additional studies examining populations before illness onset, as well as longitudinal studies throughout the course of the illness, are warranted.
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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)
 
ToneAl said:
I remember reading about Hoover's and there are instances where someone with a proper neurological disorder have a positive one.
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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.
 
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