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

bobbler said:
"If the structural changes have always been there, then that’s clearly important but we still don’t know if they represent an obstacle to improvement.

If the structural changes happen because of the condition, then we need to help patients understand that FND has changed their brain, but treatment can hopefully change it back again."

Or worse just shifting to the tactic used for 'we didn't mean the mind caused it, just that it can fix it and is part of keeping it there, mind-body la la stuff' that they backtracked the CFS stuff to.
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But they keep saying that their psychosomatic rehabilitation works, so to be coherent it would have to mean that CBT can repair the brain, basically in days. And they say that most recover, so it works for most people. And since there has been a lot of promotion of woo stuff like the Lightning process, this means that even stuff like LP repairs the brain magically in just a few hours. If their claims of "there was damage, causing the symptoms, and the treatment fixed the symptoms, therefore the brain" is to hold. Which it doesn't.

But of course that this doesn't make sense will not phase anyone.
 
rvallee said:
But they keep saying that their psychosomatic rehabilitation works, so to be coherent it would have to mean that CBT can repair the brain, basically in days. And they say that most recover, so it works for most people. And since there has been a lot of promotion of woo stuff like the Lightning process, this means that even stuff like LP repairs the brain magically in just a few hours. If their claims of "there was damage, causing the symptoms, and the treatment fixed the symptoms, therefore the brain" is to hold. Which it doesn't.
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The whole thing is turning into a comedy Pitch Meeting. If you're not familiar with the format see —

James Bond: Die Another Day Pitch Meeting (or jump to this 30s clip)
Sharknado Pitch Meeting (or jump to this 20s clip)

With apologies to Ryan George.

Producer Guy: So you have a new disease hypothesis for me?
Writer Guy: Yes sir I do. It's called "functional neurological disorder".
PG: OK. So what's the deal?

WG: Well sir you know how some people have debilitating neurological symptoms but nothing shows up on their scans?
WG: So we explain that their symptoms are Functional because there is no Structural abnormality.

PG: Amazing.

WG: So then we explain that it's all due to childhood and life stressors, causing conversion of psychological problems into physical symptoms.
PG: Is that a thing?
WG: That's what we're going with.

WG: And then we'll explain we can cure them, by teaching them to think better.
PG: And that works?
WG: No.
PG: Wow, wow, wow... wow.

WG: And then we're going to publish that 5.6% of people have this condition.
PG: Do we have scientific evidence for that?
WG: Yes sir we do.
WG: But later we're going to say it's the second most common neurological condition and that actually 16% of people have it.
PG: Will anyone notice that we just made that up?
WG: I'm afraid so.
PG: Whoops.
WG: Whoopsie.

WG: So then later we discover a new type of scan that shows that there are structural abnormalities, so that's why they have functional neurological disorder.
PG: Wow... plot twist. But doesn't that now contradict the whole setup?
WG: So shut up, and then we're going to explain how we don't yet know if the structural changes were already there and predisposed people to getting the functional symptoms.
PG: I feel like we're confused about the meaning of words.
WG: Listen sir, I'm gonna need you to get all the way off my back about this.
PG: Hey, let me get off of that thing.

WG: Anyway, so that's the hypothesis. What'ya think?
PG: Well I guess it could work.
PG: But won't it be really difficult to keep calling it functional neurological disorder if we've shown it's structural?
WG: Nope. It's going to be super-easy, barely an inconvenience.
PG: Oh really?
WG: Yes, you see we're just gonna ignore all that and just keep calling it functional neurological disorder.
PG: That works.
 
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SNT Gatchaman said:
The whole thing is turning into a comedy Pitch Meeting. If you're not familiar with the format see —

James Bond: Die Another Day Pitch Meeting (or jump to this 30s clip)
Sharknado Pitch Meeting (or jump to this 20s clip)

With apologies to Ryan George.

Producer Guy: So you have a new disease hypothesis for me?
Writer Guy: Yes sir I do. It's called "functional neurological disorder".
PG: OK. So what's the deal?

WG: Well sir you know how some people have debilitating neurological symptoms but nothing shows up on their scans?
WG: So we explain that their symptoms are Functional because there is no Structural abnormality.

PG: Amazing.

WG: So then we explain that it's all due to childhood and life stressors, causing conversion of psychological problems into physical symptoms.
PG: Is that a thing?
WG: That's what we're going with.

WG: And then we'll explain we can cure them, by teaching them to think better.
PG: And that works?
WG: No.
PG: Wow, wow, wow... wow.

WG: And then we're going to publish that 5.6% of people have this condition.
PG: Do we have scientific evidence for that?
WG: Yes sir we do.
WG: But later we're going to say it's the second most common neurological condition and that actually 16% of people have it.
PG: Will anyone notice that we just made that up?
WG: I'm afraid so.
PG: Whoops.
WG: Whoopsie.

WG: So then later we discover a new type of scan that shows that there are structural abnormalities, so that's why they have functional neurological disorder.
PG: Wow... plot twist. But doesn't that now contradict the whole setup?
WG: So shut up, and then we're going to explain how we don't yet know if the structural changes were already there and predisposed people to getting the functional symptoms.
PG: I feel like we're confused about the meaning of words.
WG: Listen sir, I'm gonna need you to get all the way off my back about this.
PG: Hey, let me get off of that thing.

WG: Anyway, so that's the hypothesis. What'ya think?
PG: Well I guess it could work.
PG: But won't it be really difficult to keep calling it functional neurological disorder if we've shown it's structural?
WG: Nope. It's going to be super-easy, barely an inconvenience.
WG: You see we're just gonna ignore all that and just keep calling it functional neurological disorder.
PG: That works.
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Brilliant. I particularly liked "I feel like we're confused about the meaning of words." :thumbup:
 
dave30th said:
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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@dave30th - can you share a link to Stone's essay.

My letter to the editor re CODES trial was not published due to Covid.
 
Andy said:
Jon Stone has had an editorial published titled "Functional neurological disorder: Past, present and future", paywalled, https://www.sciencedirect.com/science/article/abs/pii/S0013700623000908, with no abstract available.
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Could try this:

Patients and caregivers can make requests for individual papers related to medicine and healthcare at no cost. These papers can be requested by e-mailing patientaccess@elsevier.com. We aim to provide the requested articles within 24 hours. Please include the article title and author(s), date published, and/or the URL if available.
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Elsevier journals: publication fees and access to paywalled articles

On the above thread @MSEsperanza tried it successfully.
 
Joan Crawford said:
can you share a link to Stone's essay.
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That's weird--I saw a full version of it and now I can't find it. I assumed I accessed it through Berkeley but it seems now to be unavailable online. He really misrepresented the CODES findings by saying, as previously claimed in the article, that other outcomes might be more important than seizure reduction.
 
SNT Gatchaman said:
The whole thing is turning into a comedy Pitch Meeting. If you're not familiar with the format see —

James Bond: Die Another Day Pitch Meeting (or jump to this 30s clip)
Sharknado Pitch Meeting (or jump to this 20s clip)

With apologies to Ryan George.

Producer Guy: So you have a new disease hypothesis for me?
Writer Guy: Yes sir I do. It's called "functional neurological disorder".
PG: OK. So what's the deal?

WG: Well sir you know how some people have debilitating neurological symptoms but nothing shows up on their scans?
WG: So we explain that their symptoms are Functional because there is no Structural abnormality.

PG: Amazing.

WG: So then we explain that it's all due to childhood and life stressors, causing conversion of psychological problems into physical symptoms.
PG: Is that a thing?
WG: That's what we're going with.

WG: And then we'll explain we can cure them, by teaching them to think better.
PG: And that works?
WG: No.
PG: Wow, wow, wow... wow.

WG: And then we're going to publish that 5.6% of people have this condition.
PG: Do we have scientific evidence for that?
WG: Yes sir we do.
WG: But later we're going to say it's the second most common neurological condition and that actually 16% of people have it.
PG: Will anyone notice that we just made that up?
WG: I'm afraid so.
PG: Whoops.
WG: Whoopsie.

WG: So then later we discover a new type of scan that shows that there are structural abnormalities, so that's why they have functional neurological disorder.
PG: Wow... plot twist. But doesn't that now contradict the whole setup?
WG: So shut up, and then we're going to explain how we don't yet know if the structural changes were already there and predisposed people to getting the functional symptoms.
PG: I feel like we're confused about the meaning of words.
WG: Listen sir, I'm gonna need you to get all the way off my back about this.
PG: Hey, let me get off of that thing.

WG: Anyway, so that's the hypothesis. What'ya think?
PG: Well I guess it could work.
PG: But won't it be really difficult to keep calling it functional neurological disorder if we've shown it's structural?
WG: Nope. It's going to be super-easy, barely an inconvenience.
PG: Oh really?
WG: Yes, you see we're just gonna ignore all that and just keep calling it functional neurological disorder.
PG: That works.
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That's just perfect @SNT Gatchaman , thank you! :rofl:

I love Ryan George's pitch meetings and the sharknado one is one of my favorites, especially because of the scienk. ("Is that a thing?" "According to scienk it is!")

It's well done, I heard Producer Guy and Writer Guy in my mind while reading it. :laugh:
 
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TiredSam said:
Could try this:



Elsevier journals: publication fees and access to paywalled articles

On the above thread @MSEsperanza tried it successfully.
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Thanks for that. I shall take a wee look.

@dave30th I shall see if a response would be worthwhile given my earlier rejection re CODES. Unfortunately, I have experienced my 3rd family bereavement recently and along with clinical commitments I may be limited. I shall see what I can do. Also, I am happy to contribute too to wider efforts. FND is popping up unhelpfully more in clinical practice and NHS clinics.
 
dave30th said:
Assuming this is a reference to the famous line reported to have been said by Rudy Guiliani during his campaign to overturn the 2020 US election...Yes, this is largely the point. I thought of citing Guiliani in the post but decided against it not because I didn't find the analogy appropriate but because using it might come across as a cheap and unnecessary shot. I think it's clear that they have lots of theories with no evidence--or to be fair, let's say pretty thin evidence.
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From your blog the main arguement in using hoovers test for functional symptoms fro what i read is that functional weakness ia voluntary.
Which is the most absurd explanation and can not be tested
 
Trial By Error: Psych Medicine’s Non-Responsive Response to a Request for Correction of Prevalence Rates Cited in FND Paper

"I have recently sent out a few letters to major journals seeking corrections in articles that have mis-reported the estimated prevalence of functional neurological disorder in a seminal 2010 study in their field of expertise. So far one journal, NeuroImage: Clinical, has agreed. Others seem more reluctant. I received the following non-responsive response from Psychological Medicine, the journal that published the arguably fraudulent PACE “recovery” paper in 2013. This august publication continues its record of refusing to acknowledge self-evident errors. I have responded on behalf of the group of us seeking these necessary corrections."

https://virology.ws/2023/07/20/tria...ction-of-prevalence-rates-cited-in-fnd-paper/
 
WTH is even happening here? This is not ambiguous or hard to understand. They are explicitly refusing to correct an incorrect number published in their journal. Which is clearly more than a pattern, it's a systemic practice, including the initial publication of easily verifiable incorrect numbers. And mere opinions presented as fact.

Numbers are up to opinion now. Even though this very same number is cited differently by the very same authors in other publications. In medical science. To basically general indifference, as showing incorrect numbers mostly leads to a "that's just your opinion" reply. Wow. This is truly Rome is burning level of everything falling apart.
 
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rvallee said:
Which is clearly more than a pattern, it's a systemic practice, including the initial publication of easily verifiable incorrect numbers.
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Yep. Quality control is clearly utterly broken in this area of medicine, and rapidly getting worse as they circle the wagons ever tighter, flatly refusing ever more tenaciously to accept any responsibility for any of it, just sinking ever further into blaming everybody and everything else, especially those bastard patients for refusing to get better upon command.
rvallee said:
And mere opinions presented as fat.
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:D
 
Don't think this deserves a thread of its own, but thought it should be noted in case @dave30th wants to check the claims made

Functional neurological disorder: a review, 2023, Dusara et al, published in British Dental Journal

Abstract

Functional neurological disorder is a common condition which may present to dental professionals. The dental team need to be aware of its varying presentation and the impact this can have on dental management. An overview on functional neurological disorder will be provided, as well as information regarding three patient cases.

Key points
  • Provides an overview of functional neurological disorder.

  • Describes dental management considerations.

  • Discusses the management of patient cases.
Paywall, https://www.nature.com/articles/s41415-023-6054-8
 
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