Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

I just realised there is a pattern to all this work.

It began with paper after paper looking at how to make the idea of a functional disorder palatable to the patient with some even trying to work out why patients were "resistant". The fact the theory is wrong was not considered.

Now it is all papers trying to make the diagnosis palatable for professionals.

 

When you put it this way... One dominant theme in the literature is how we reject it, they are endlessly frustrated that we are not gullible enough for it. So naturally, convincing physicians is far easier. When it comes to psychosomatics most are endlessly gullible, they accept every claim no matter how absurd, since unlike us they never see the outcomes and just accept them as fact.

Maybe it will work, maybe it will backfire. But yeah that's a change in strategy that makes sense given the last few years. Their frustrations are well-documented and this is a natural regression.

 

Inaccurate Reference Leads to Tripling of Reported FND Prevalence, 2023, Tuller et al

"To the editor:

An article in NeuroImage: Clinical, “Neuroimaging in functional neurological disorder: state of the field and research agenda” (Perez et al, 2021), cited a prominent paper (Stone et al, 2010) as evidence for the assertion
that functional neurological disorder (FND) is the “2nd most common outpatient neurologic diagnosis.” Although studies have yielded varying FND prevalence rates, the claim that it is the second-most common diagnosis at outpatient neurology clinics represents an erroneous interpretation of the findings of the referenced 2010 paper."

https://osf.io/24xf8/

Dave on Twitter, "The journal NeuroImage: Clinical has accepted our letter noting that a major article mis-cited findings from a seminal study, thereby tripling reported rates for FND. (This is a pre-print.)"

 

Trial By Error: Letter on Inflated FND Prevalence Rates Accepted for Publication

https://virology.ws/2023/11/02/tria...nd-prevalence-rates-accepted-for-publication/

 

I was diagnosed without rule-in signs. That seems common.

 

I was diagnosed with FND without rule-in signs getting a mention too. This was back in the 1990s when nobody had ever thought of rule-in signs, and FND was something that few patients would ever have heard of. I didn't know what FND was and asked for an explanation. I got the BS about "software" and "hardware" and how they didn't need to treat or investigate the problems I had because there was nothing wrong with me and it was all in my head.

My "FND" was cured about five years after diagnosis when I had surgery for something else that found and fixed the worst of the problems. (I'd had the problems for about twenty years before being diagnosed with FND, and doctors all thought I was drug-seeking whenever it came up because I was in pain and wanted help to cope with that pain. I didn't get any help.) The problems I had were of the type that do not show up on any form of scan and had to be seen to be diagnosed and treated.

 

"Rule in signs" is such an Orewllian expression, because in fact they are signs that cannot be readily explained within standard neurological illness models. They aren't signs that positively indicate anything about the cause of the person's illness, other than that they don't fit the predictions associated with common neurological illnesses.

By showing any of the signs you "violate" the predictions of "organic" neurological illnesses, and therefore your problem is "functional".

So actually, the signs sort of rule out, rather that rule in.

 

So the rule in signs such as Hoover's can indicate a organic illness but what happens is we see bias towards a psych illness in the minds of neuros.

 

My question is: Does the Hoovers (sign?) actually indicate anything real? I also want to know what the difference is between a Functional stroke and a TIA. As someone from a family with a history of stroke this is a question that concerns me.

Though I think the neurologist diagnosed me with FND cause he knows it when he sees it…..

 

Weirdly enough, its the opposite. @ToneA1. The Hoover's sign is supposed to show that your problem is not due to "organic" illness. And therefore your problem is "functional" (whatever that is supposed to mean, its all very vague...).

Hoover's test is said to be positive if the affected limb (arm or leg) appears weak when the person is asked to move it, but its holds well when needed to balance a movement involving the rest of the body.

Its a kind of 'gotcha!' test "You think you have a weak limb (arm or leg), but when you're not focusing on it, your limb is actually really strong!"

 

Hi there, @LJord. Hope my post above helps address your first question about the Hoover's sign.

The idea of a "functional stroke" is a relatively new kid on the block. Its now being used to describe people who have reported a stroke-like event, but their difficulties or symptoms are well in excess of what we would normally expect based on brain scans, etc.

It is yet another of those diagnoses that has sprung up to cover the gaps where medical practitioners can't explain what's wrong or do anything useful. It eases the practitioner's mind and makes them feel more empowered, because they can send the person off for therapy. Or if that's beyond budget, have a "managed conversation" about how the person symptoms are "real to them" but probably due to stress/anxiety, etc.

A weird concept because it is the exact opposite that's the bigger problem. Many people who have actually had strokes don't know it and don't present to hospital - especially if they don't show any of the classic signs (motor/sensory weakness on one side, speech disturbance). Sometimes, no-one clocks this until the second stroke, when the person actually does get a brain scan, and there's a mix of old and new damage visible on the scan. Missing a stroke is a very bad thing, because then the person doesn't receive the management/medication that could well prevent a second, more severe, one.

 

This is a very useful comment about the dangers of 'loose terminology' -functional or worse 'Functional ' wotha capital F! FND etc....

 

I still can see how a sign such Hoover's can indicate a functional illness.

 

I agree the whole thing is hazy. The concept of a "functional" illness is such a very loose and vague one. So no sign can really indicate anything's a functional illness until we know exactly what we mean by this term and what causes it.

But the basic idea of the Hoover's sign is that you wouldn't see it in "organic" neurological disease (the limb would be equally weak in both situations), therefore it is supposed to rule out organic illness. And anything that's not "organic" illness gets assigned the FND label.

 

If a neuro isn't up to date or biased I see a lot of organic illnesses have a positive Hoover's such as ataxia that was written by the king of fnd dr S so there is still a chance of misdiagnosis if they are not careful
But we all know what they mean by functional conversion disorder

 

Trial By Error: Update on Our Letter Concerning the Prevalence of Functional Neurological Disorder

In August, I submitted a letter to NeuroImage: Clinical concerning inflated rates of prevalence of functional neurological disorder, on behalf of myself and nine colleagues. After the letter went through peer review and a round of revisions, I was informed in early November that it had been accepted, as I noted in a blog post.

Our letter was a response to a 2021 article that cited a seminal 2010 study in asserting that FND was the second-most-common presentation at out-patient neurology clinics. This assertion was untrue—the 2010 article found that the number of cases qualifying as conversion disorder, as FND was then called, was way down the list of diagnoses. I had initially been informed that our letter might be published within a couple of weeks. As it turns out, the journal is planning to release it along with an expected response from the authors of the 2021 paper, which certainly makes sense. I’ve been told that the exchange is likely to be published this or next month.

https://virology.ws/2023/12/11/tria...evalence-of-functional-neurological-disorder/

 

David Tuller included a link to an article by a woman who was profoundly grateful for her FND diagnosis. It is long and in depth. She states that the largest FND clinic in the USA is in Boston, MA. Suddenly my experiences after moving to Boston, MA are making sense. They are training Neurologists here and Mass General is considered a leader in all kinds of things. And so a young woman I met who was diagnosed with FND when she was having a migraine headache. My experiences trying to get medical care especially after being tagged with the scarlet F. I would lay odds if you could get a number for diagnosed cases here in Boston it would be higher than other parts of the country. This while ME/CFS specialists are closing their waiting lists and not taking new patients.

 

The rebranding of hysteria to FND has been a huge success for the neurobabblers. Many patients are initially hoodwinked by the respectable sounding name. Eventually though when they get denied any further investigations or access to healthcare, they’ll learn what FND means on the streets.

 

"A person with Functional Neurological Disorder, writing at the intersection of neuroscience, history, and disability rights." "Before my legs collapsed, I still thought of myself as an athletic guy in my mid-twenties."