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

Gradzy said:
I just wanted to point out a few things that go beyond me reacting to your quote, and to look at the podcast itself.

Firstly, the podcast is available n from all the usual podcast libraries like Apple Podcasts or Pocket Casts etc if you want to download it and listen to it properly.

https://pca.st/episode/3bdcd91f-f771-4249-8ba6-628454006ffd

This is interesting, take-home points for practitioners, from the official Goodfellow link you provided:



Point 5: are they really? Are you sure about that?

The podcast is a goldmine of telling quotes. Hard to know where to start but here are just a few:

11:50 - “and to be honest the history is, I would say 90% of the diagnosis. The examination is rarely super helpful”

11:57 - “I think the best thing about doing the examination is that, uh, the patient knows that you’re looking hard and you’re taking them seriously and you’re really trying to tease out if there’s any other structural issues going on”

Very suggestive to me that he feels it’s very important to reassure the patient that you’re taking them seriously. We see this a lot in in FND literature - don’t let on.

13:05 - “…are we doing investigations to exclude organic pathology?

“Not so much to exclude it, but to see if there’s additional organic pathology.”

As we see again and again, it seemingly doesn’t matter that the real world practice around FND is self-contradictory.

FND is meant to be something that involves no organic pathology, but we see that in practice they will diagnose FND even if organic pathology is found - that is if you ever even do testing that can actually reveal that.

14:44 - “tests are there to confirm what your brain thinks. They’re not there to give you the answer. We fall into this trap of ordering an MRI or something to give you an answer”

There we have it. The only utility of tests is to confirm your assumptions. If the tests don’t contradict your assumptions, then they must be correct. Of course the problem here is that you assuming you’ve done the right test and that the test result is accurate.

I had tests that could be taken (and were) to ‘confirm’ the consultants assumption of FND, because they didn’t reveal any organic disease. The problem was that the tests I was given were physically incapable of revealing the organic disease I had.
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Reminds me of a quote from Frances Allen from twitter about FND where he says it's to easy for Neurologist to dish out a quick FND diagnosis and blame psych issues rather than to find the real diagnosis.
He also is implying that many Neurologists have a lackluster diagnostic ability and biases towards a psych diagnosis rather than a true biological diagnosis.
 
ToneAl said:
Reminds me of a quote from Frances Allen from twitter about FND where he says it's to easy for Neurologist to dish out a quick FND diagnosis and blame psych issues rather than to find the real diagnosis.
He also is implying that many Neurologists have a lackluster diagnostic ability and biases towards a psych diagnosis rather than a true biological diagnosis.
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Not sure who Francis Allen is?
 
NelliePledge said:
Not sure who Francis Allen is?
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This guy?

Allen J. Frances[/B said:
(born 2 October 1942) is an American psychiatrist. He is currently Professor and Chairman Emeritus of the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine. He is best known for serving as chair of the American Psychiatric Association task force overseeing the development and revision of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Frances is the founding editor of two well-known psychiatric journals: the Journal of Personality Disorders and the Journal of Psychiatric Practice.
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So Long Covid Support have opened up a research involvement consultancy. It's details can be seen in the link. But they've quoted psychiatrist Dr Tim Nicholson in some of their images. This seems a bit confusing as he's basically an FND specialist, part of FND hope. He's a key player at Kings and the Maudsley. They've obviously worked together and he's an advisor. Why would they connect with an FND specialist?

https://www.longcovid.org/research/research-involvement-consultancy
 

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If you’re open to support from a range of health professionals working within the existing NHS structures then you don’t look a gift horse in the mouth. Probably if you look into it at all you accept the narrative that FND academics/clinicians has moved on from conversion disorder mentality on face value.

Only if numbers of their members begin to question what they experience from FND professionals will the organisation begin to question.

because some ME/CFS people question the role of FND practitioners isn’t relevant as it’s not LC people
 
Experience: ‘I woke up with a Welsh accent’

"I kept my Kent accent through my adult life. Then in 2022, I developed functional neurological disorder (FND), a condition that disrupts how the brain communicates with the body. It caused mobility issues and seizures, but I would also sometimes develop a temporary vocal tic or slurred speech. So it didn’t come as a huge surprise when, one day in June 2023, I woke up and my voice sounded different."

...

"I’ve since spoken with a professor of neurology, who believes my brain has probably triggered the accent as a way of dealing with my FND. The specific way it controls the muscles in my face makes my accent manifest as Welsh – it’s all to do with how your tongue and mouth move. I don’t have nearly as many problems with slurred speech since my accent changed – somehow this is just easier for my brain. Though when my speech stars slurring again, my accent temporarily returns to my old English one."

https://www.theguardian.com/lifeand...y/24/experience-i-woke-up-with-a-welsh-accent
 
Andy said:
Experience: ‘I woke up with a Welsh accent’

"I kept my Kent accent through my adult life. Then in 2022, I developed functional neurological disorder (FND), a condition that disrupts how the brain communicates with the body. It caused mobility issues and seizures, but I would also sometimes develop a temporary vocal tic or slurred speech. So it didn’t come as a huge surprise when, one day in June 2023, I woke up and my voice sounded different."

...

"I’ve since spoken with a professor of neurology, who believes my brain has probably triggered the accent as a way of dealing with my FND. The specific way it controls the muscles in my face makes my accent manifest as Welsh – it’s all to do with how your tongue and mouth move. I don’t have nearly as many problems with slurred speech since my accent changed – somehow this is just easier for my brain. Though when my speech stars slurring again, my accent temporarily returns to my old English one."

https://www.theguardian.com/lifeand...y/24/experience-i-woke-up-with-a-welsh-accent
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It is not completely unusual for someone following a CVA or head injury to develop a different accent. If the neurologist actually said that the brain somehow founded it easier to cope with an FND by speaking in a ‘Welsh’ accent it hardly inspires confidence in his scientific rigour.
 
Andy said:
I’ve since spoken with a professor of neurology, who believes my brain has probably triggered the accent as a way of dealing with my FND.
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Perhaps PWME should try speaking with a Welsh Accent:

'Cariad. Sto-op, Look you.' perhaps.

It could deal with the ME/CFS very well.

I can see that it is nice to have an explanation but maybe the brain didn't actually know why it was using a Welsh Accent? Maybe the professor didn't know either?

It's as if FND is a Freedom Pass for neurologists conning people.
 
Peter Trewhitt said:
It is not completely unusual for someone following a CVA or head injury to develop a different accent. If the neurologist actually said that the brain somehow founded it easier to cope with an FND by speaking in a ‘Welsh’ accent it hardly inspires confidence in his scientific rigour.
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I'm hoping to start talking like a Nac Mac Feegle if I fall off my ebike and hurt my head. You heard it here first.
 
alktipping said:
if only we had their tenacity for battle at every opportunity .Terry Pratchett was a wonderful writer with many levels to his story telling .
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A total non sequitur, but though struggling to remember the full details, some forty plus years ago there was a Scottish writer trying to spearhead a revival of Celtic/Pictish pagan spirituality. He used to lead woodland expeditions at night for people to identify their spirit guides. I did know someone who went along to such an event, but when I asked him about his spirit guide he replied that it was a moonless night, he tripped, broke his leg and ended up in hospital well before any spirits manifested.

One of this writer’s lines that stuck in my mind was that ‘not all fairies were pretty dainty little winged creature but some were big and hairy, distinctly dangerous and dressed in leather’. I can’t be certain now that my memory hasn’t added in the ‘dressed in leather’ for narrative effect, it was a bit Tom of Finland meets the Little Folk.. However I did wonder when I later read of the Nac Mac Feegle if Terry Pratchett was familiar with the work of this Caledonian visionary.
 
https://www.abc.net.au/news/2024-06...smissed-doctors-myth-virus-harmless/103959078

Now aged 13, Jack was a fit and talented athlete whose life revolved around sports, especially cricket, rugby and tennis. It's a major reason his father Brett* was so shocked when, during one of their visits to the hospital, a neurologist performed a few reflex tests on Jack, concluded his nerves were fine, then announced his symptoms were psychological.

"He said, 'Listen, it's all in your son's head, he has something called FND — functional neurological disorder'," says Brett. "I said, 'Is that psychosomatic?' and he said, 'Well, we don't call it that anymore'." Brett now knows that FND is a controversial diagnosis that should only be made after excluding other possible medical conditions. Numerous long COVID patients have reported being misdiagnosed with FND — a precarious situation, experts say, because it can block their access to testing and treatment. But Jack was devastated. "He was crying because he's the kid who goes to rugby with a migraine … he'll push through anything," Brett says. "So for the neurologist to say … it was all in his head, I think that broke him a bit."
 
There seems to have been a noticeable extension of " reach" in FND diagnoses recently to existing defined conditions .
There have been a fair amount of tweets batting back and forth .
POTS seems to be a favourite at moment

https://twitter.com/user/status/1805981601580376242


Let me help clarify this debate/confusion/anecdotes... I'll be brief because I am not confused. POTS IS NOT FND. There is no debate and no elaborate formulations needed. I am always happy to explain the pathophysiology of #POTS and other autonomic disorders to physicians.
 
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