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

dave30th said:
Right, it is unfalsifiable. Because you can have Parkinson's AND have a functional tremor that is different from a Parkinsonian tremor (per the FND experts). Or you can have epileptic seizures as well as functional/dissociative seizures, so even if they decide you have epilepsy after giving you an FND diagnosis, they still say you have FND as well because the seizures have different features. Even in a case study a few years ago describing three patients who died of a prion disease within months of having been diagnosed with FND, the authors decided the FND diagnosis was correct at the time and that the prion disease manifested as an FND. Ok, then.
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That reminded me of a post somewhere in the forums here of a woman who was diagnosed with functional seizures but was later on diagnsed with a rare form of siezures because a specific pet scan was not ordered intially i think it took her about 10 to 20 years before a correct diagnosis was made
 
ToneAl said:
That reminded me of a post somewhere in the forums here of a woman who was diagnosed with functional seizures but was later on diagnsed with a rare form of siezures because a specific pet scan was not ordered intially i think it took her about 10 to 20 years before a correct diagnosis was made
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I recall a case like this being covered on the BBC. If I recall correctly, she had an ultra rare form of epilepsy that doesn’t show up on an EEG. But due to early life adversity, deprived background etc. it was dismissed as psych of course.
 
ToneAl said:
That reminded me of a post somewhere in the forums here of a woman who was diagnosed with functional seizures but was later on diagnsed with a rare form of siezures because a specific pet scan was not ordered intially i think it took her about 10 to 20 years before a correct diagnosis was made
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If there were consequences for this, liability, like there is for some mistakes, this wretched ideology would come to an end. But it's always no fault. Learning from mistakes only works if they're painful.
 
FND: no neurobiological investigations with over 100 participants; limited longitudinal data; failure to incorporate adequate comparator groups like PTSD, Major Depressive Disorder, etc; no plausible explanations for how emotions/attention/agency issues produce the symptoms in question; no semblance of a rationale for why pathologies manifest when they do.

All in all, wild speculation with little empirical evidence. They do have the CODES trial, where CBT didn’t lead to a statistically significant reduction in seizures. That didn’t stop it from being heralded as a massive success.
 
Sid said:
I recall a case like this being covered on the BBC. If I recall correctly, she had an ultra rare form of epilepsy that doesn’t show up on an EEG. But due to early life adversity, deprived background etc. it was dismissed as psych of course.
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It was a twitter account account linked to a bbc episode if i remember corectly
 
Sid said:
I recall a case like this being covered on the BBC. If I recall correctly, she had an ultra rare form of epilepsy that doesn’t show up on an EEG. But due to early life adversity, deprived background etc. it was dismissed as psych of course.
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This case highlights some important poits.
The biasis of doctors to diagnose a physch condition rather than a biological one on the basis of all tests are negative.
The limitations of current technology and the belief of infalibility of technology.
The doctor should have said i dont know
 
Charles B. said:
no plausible explanations for how emotions/attention/agency issues produce the symptoms in question; no semblance of a rationale for why pathologies manifest when they do
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Also, no plausible explanation for why one person ends up with nonepileptic convulsions, while another ends up with pain, yet another with twitching in foot, all due to magical effects of emotions/stress.
 
Charles B. said:
They do have the CODES trial, where CBT didn’t lead to a statistically significant reduction in seizures. That didn’t stop it from being heralded as a massive success.
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In fact, the non-intervention group had a greater reduction of seizures than the control group, although the trend wasn't statistically significant. They touted it based on a few subjective secondary outcomes that showed improvement and decided that seizure reduction was not after all most patients' primary concern--rather, patients are more concerned with "quality of life" measures. Yeah, right. The press release from King's was just one big lie.
 
Trial By Error: A Letter Requesting Corrections of Inflated Prevalence Rates in Nine More FND Papers

"Several colleagues and I recently wrote to the journal NeuroImage: Clinical to request a correction in a 2021 article about functional neurological disorder (FND). The article included the false claim that a seminal 2010 study found that FND was the second-most-common diagnosis at outpatient neurology clinics. In fact, FND—called conversion disorder at the time—was the eighth-most-common diagnosis, with a prevalence of 5.5%. The #2 claim was based on the notion that the prevalence was almost triple that, at 16%.

The lead and senior authors of the paper, David Perez and Selma Aybek, are experts in the field. The many co-authors included a virtual who’s who of FND investigators. The journal responded within days to let us know that the authors had agreed to a correction; the editorial team asked for our input on the proposed language. We took this quick response as a welcome acknowledgement that the argument for a correction was air-tight and indisputable. We were, however, dissatisfied with the authors’ proposal, and we offered alternate language.

Last week, we learned that the authors had not taken our advice but had nonetheless elaborated on their correction. We still believed it fell short of what was appropriate, given the substantive nature of the initial error, but accepted the new version as a done deal. I described the correction but did not publish the text because it was not ours to publish.

Unfortunately, the article in question is only one of dozens of papers by leading FND experts that have also cited Stone et al to argue that FND was the second-most-common diagnosis and/or had a prevalence at outpatient neurology clinics of 16%. To start the process of seeking corrections in these additional papers as well, I have sent a letter to Perez and Aybek. The letter notes that we found at least nine additional papers for which one of them served as lead or senior author that contained similar mis-citations of Stone et al."

https://virology.ws/2023/06/30/tria...ted-prevalence-rates-in-nine-more-fnd-papers/
 
Jon Stone has just published another essay in which he questions whether CODES had the right primary outcome after all. Qualify of life measures are "arguably" more important to patients. Right. According to that theory, patients are more interested in that their seizures are less bothersome to them more than they would prefer not to have seizures at all.
 
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