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

PODCAST: An Updated Round Table Discussion on FND: Diagnosis of FND and New Phenotypes

"In this first episode of our three-part series, Prof. Jon Stone talks with Drs. Selma Aybek, David Perez, and Sarah Lidstone about FND diagnosis and exploring new phenotypes.

Associated Links:

• FND Society at fndsociety.org
• FND guide for patients at neurosymptoms.org
• FND Hope at fndhope.org

Visit NPUb.org/Podcast for associated article links.

This episode was sponsored by the ExTINGUISH Trial for NMDAR Encephalitis: Call 844-4BRAIN5 to refer patients."

Code:

https://directory.libsyn.com/episode/index/id/27648900

 

PODCAST: An Updated Round Table Discussion on FND: How and Why Does FND Occur?

"In the second episode of our three-part series, Prof. Jon Stone talks with Drs. Selma Aybek, David Perez, and Sarah Lidstone about how and why FND occurs.

Associated Links:

• FND Society at fndsociety.org
• FND guide for patients at neurosymptoms.org
• FND Hope at fndhope.org"

Code:

https://directory.libsyn.com/episode/index/id/27868815

Looks like the third episode is yet to be released at time of posting.

 

Seems a bit odd that a Phase-2B Randomized Placebo-Controlled Trial of Inebilizumab in Anti-NMDA Receptor Encephalitis, https://n.neurology.org/content/98/18_Supplement/1651, is sponsoring a podcast episode about FND.

 

Probably related to @Andy ' s posts on podcasts


POTS seems to be being redefined ...
https://twitter.com/user/status/1698023397370823039

 

I felt nauseous the other day - FND confirmed?!

Hmmm. It really makes you think.

 

Yes I can't tell whether the source of the issue is actual grandiosity or whether it is just cuddling bigotry so hard in order to keep being able to use conversion disorder whilst claiming they aren't bigots and tricking a new generation by making the words so dense and the rhetoric not full-circling/unjoined-up that a few fall for it. Or maybe the latter is driving the former simply because for some reason (and I think the both sides-ism that people seem so tempted to allow still now with the ME/CFS stuff) instead of waking up to the come to jesus moment like grown-ups and realising if you pull the plaster off fast, name what occured, apologise and just put it in its box then the whole thing is far less painful even to those who might have got it wrong than having to do the crazy-dance of rewriting reality to beyond contortion.

 

JS: "There's a lot more to FND than the one neurological symptom and a sign. How in the time that we've got do we assess and help people who also typically have many other symptoms like pain, fatigue and other psychiatric co-morbidity? How do we square that circle?"

SA: "We can add to that that when we refer to FND, we are talking really about the presenting symptom that is neurological. But [...] very often these patients... their burden is centred on co-morbid pain. They also very often have chronic pain. [...] They can describe cognitive fog [...] fatigue and sleep disorders. These belong to the spectrum of FND."

SA: "They have a syndrome of a number of different symptoms that are occurring together and that's almost always the case, right. I mean it's extremely unusual [...] to have an isolated motor symptom without an accompanying either pain, fatigue, cognitive symptom or somatic anxiety or health pre-occupation..."

Got to keep feeding the psychosomatic industrial complex.

 

This reads to me as if Stone thinks pain and fatigue are caused by mental health problems, never physical problems. It is as if the man has lived in enviable perfect health his entire life - never been ill, and never even stubbed his toe, and possibly is one of those unusual people who don't feel pain.

 

Trial By Error: Letter to Journal about Inflated Claims of FND Prevalence

"As I reported in June, one journal—NeuroImage: Clinical–agreed to correct a 2021 paper from Perez et al that had indisputably mis-cited the 2010 paper. I then began referencing that upcoming correction in letters I sent to other journals. I also sent a letter directly to the lead and senior authors of the 2021 paper, thanking them for agreeing to the correction in NeuroImage: Clinical and asking them to initiate similar corrections in other papers they co-authored. (They did not respond.)

I subsequently heard from NeuroImage: Clinical that the authors had withdrawn their agreement to the correction. Wow! I’d never heard of such a thing, and neither had my co-signatories, but there it was. The authors had acknowledged that a correction was warranted—and then, apparently, unacknowledged that self-evident reality. Perhaps they had not fully grasped that correcting this obvious error in one paper meant correcting it across the board. Who knows? No explanation for this unusual reversal was provided.

In any event, the journal invited us to submit a letter for publication instead. We have done that, and it is now in the process of being reviewed. If the letter is accepted, I assume the authors will be given a chance to respond. In the meantime, the letter has been posted on a pre-print server and is now in the public domain, so I have included it below."

https://virology.ws/2023/09/07/tria...-creep-and-inflated-claims-of-fnd-prevalence/

 

Amazing what happens when people understand there are simply no consequences to misbehavior. Cochrane is a leader on this, has paved the way for a new gold standard of systemic misbehavior and total indifference to their mission.

What I don't understand is the indifference and dereliction of duty from the journals, but clearly the reasoning is that it's worse to admit and correct mistakes than it is to deny them. It's not credible that those are isolated cases, the pattern is far too common. This is the norm.

How can the peer review process even be claimed to work, then? Authors don't care about mistakes as long as there are no consequences for them. Journals don't care either, and they only dish out consequences to authors if they feel there would be consequences for them. You can point out mistakes and people seem to act more confused than anything, as if they don't know how to even process being told they made a mistake.

We have truly reached a level of aristocratic indifference in academia, or at least in medical research. Some parts still function, but it's precisely where it most needs to function that it doesn't, which is the same as not functioning. Like an insurance that fully covers you, as long as you don't ever make a claim. For sure everyone loses out here.

 

Dr. Kimberly Lanni and Kaiser Sacramento's Conversion Disorder Mill

How the Movement Disorders Team tried to push me into Psychiatry based on a misdiagnosis

https://baileyg.substack.com/p/dr-kimberly-lanni-and-kaiser-sacramentos

Author on Twitter,
"Thanks to @davidtuller1 and @PutrinoLab I was able to get an actual diagnosis of my neurological disorder that was misdiagnosed by Kaiser. Here's the article where I talk about how that misdiagnosis happened:"

 

It’s amazing that they think they can just claim stuff like fatigue, brain fog and sleep problems when I would say that broadly speaking all of those things are infamously tricky to pin down sometimes as they can be potentially caused by a load of different illnesses or interactions between multiple factors.

 

That's what allows them to get away with it. It's the "non-specific" thing, where anything that isn't a unique snowflake just doesn't count, because of the way differential diagnosis requires them.

The more common something is, the worst they are dealing with it if there isn't that unique snowflake telling them what to do. The most common symptoms in medicine have been turned into a "positive sign" for psychosomatic models. It's impossible to imagine worse failure than this. It's mind-blowing that this is happening when the entire history of medicine is this constant lesson in how such a logical fallacy is blatantly wrong.

The absurd thing is that it basically made medicine rapidly improve at the cutting edge, while actually regressing in its foundations. The foundations of a discipline are always the most important, because they are what everything else is based on and focus on what's most common. Because of psychosomatic ideology, those foundations have been eroded to the point where they are hanging by a thread, barely functioning and getting worse every year. It'd be like NASA spending billions for giant astrology instruments. It's literally unthinkable, experts aren't supposed to be that lost.

Strong overlap with how the COVID pandemic was so badly mismanaged, that it will not even be possible to deal with any future pandemic for at least 20-30 years. All standard measures have effectively been disabled. And the current messaging of making it to be the "common cold", or "summer flu" or whatever. It's such a puzzling and terrifying spectacle when you see it for what it is.

I've recently seen one of the big figures in COVID denial, Vinay Prasad, argue to literally cease all testing for common illnesses, to never even say it whenever people are ill, lie if they have to, withhold it from their employers, refuse to get tested. Including MDs. He is an MD. Specialized in public health, and this opinion is far more common than respect and acknowledgement of Long Covid. This is what happens when the foundations of a discipline are turned into quicksand in the pursuit of a foolish ideology.

 

Paywalled, so didn't think it deserved its own thread.

The Financial Burden of Functional Neurological Disorders

Purpose of Review
Functional neurological disorder (FND) is a common and severely debilitating condition lacking clinical ownership, existing between neurology and psychiatry. This article reports the findings of recent research investigating the economic costs of FND diagnosis and management. We define what the costs are, why they exist, and suggest actionable steps to reduce them.

Recent Findings
The financial burden of FND exists across the globe characterized by high healthcare utilization resulting in exorbitant direct and indirect costs for the patient, healthcare system, and society. Inadequate medical education and stigmatization of the disorder prolong the time to diagnosis, during which cyclical utilization of inpatient and emergency department services drive up costs. Despite being cost-effective, lack of accessible treatment compounds the issue, leaving patients without a reliable exit.

Summary
Recent findings support an increased awareness and the need for a cultural shift to overcome the financial burden associated with this underserved population.

https://link.springer.com/article/10.1007/s11910-023-01298-8

 

The costs are, as far as I can tell, those associated with not curing people so the patients keep on using healthcare in the hopes of finding a cure for whatever ails them, until such time as they die or give up.

 

cost-effective
lack of accessible treatment

Hmm. I don't think they gave this one much thought. Are they imagining that if they could devise treatments they would be cost-effective? That's just imagination. Like if wishes had wings, we could fly, presumably cost-effectively. Or are they pretending that there are treatments, they're just not made accessible? Because that's ridiculous. There is zero evidence of any effective treatments, it's the old conversion disorder, everyone knows it, it will never be taken seriously, and the patients even less so.

In fact there are no treatments precisely because those are real issues that have been swept under the psychosomatic rug, where no progress can occur, because there is no such thing as a biopsychosocial breakthrough, and no one can actually get help. It is effectively alternative medicine, and just as effective, but with the costs, direct and indirect, of scientific medicine. Which is basically paying the maximum price for the lowest quality item.

It's true that patients don't have a reliable exit. That's a choice. A choice made by medicine, over the delusions of a 19th century Austrian cokehead, and a lot of very bad ideas since. Wait, no, actually it's the same idea but recycled over and over again. But they're basically using a mix of delusions and imagination instead. And the wheel of failure keeps spinning and spinning.

What's even more baffling is that even while making it about cost-effectiveness, they'd rather keep losing money than actually do something useful, simply because egos demand that this nonsense has to be real. Even when all they care about is how much money it costs, they can't even make a simple calculation that adds up. Such a weird bunch of people.

 

There seems to be yet another themed edition of a journal centered around FND. Rather than flood the forum with them, the table of contents can be found here, https://www.sciencedirect.com/journal/neurologic-clinics/vol/41/issue/4 where you can find the following delights:

• Lessons from a Neurologist After 25 Years of Functional Neurological Disorder Subspeciality Practice, forum thread here.
• Functional Movement Disorder: Assessment and Treatment, forum thread here.
• Using Verbally-Reported and Video-Observed Semiology to Identify Functional Seizures
• Functional Cognitive Disorder: Diagnosis, Treatment, and Differentiation from Secondary Causes of Cognitive Difficulties
• Functional Speech and Voice Disorders: Approaches to Diagnosis and Treatment
• Persistent Postural-Perceptual Dizziness: Review and Update on Key Mechanisms of the Most Common Functional Neuro-otologic Disorder
• Functional Neurological Disorder: Diagnostic Pitfalls and Differential Diagnostic Considerations
• Toward a Precision Medicine Approach to the Outpatient Assessment and Treatment of Functional Neurological Disorder
• Outpatient Approach to Occupational Therapy for Paroxysmal Functional Neurologic Symptoms: Sensory Modulation Training as an Emerging Treatment
• Developing a Curriculum for Functional Neurological Disorder in Neurology Training: Questions and Answers
• Setting up Functional Neurological Disorder Treatment Services: Questions and Answers
• Somatic Symptom Disorder and Health Anxiety: Assessment and Management
• Functional Neurological Disorder Among Sexual and Gender Minority People

 

https://twitter.com/user/status/1716665565899538485

 

Posting this here as no abstract or working link to journal is available at time of posting.

Functional neurological disorder: defying dualism, 2024, Jon Stone, Ingrid Hoeritzauer, Laura McWhirter and Alan Carson
Pubmed, https://pubmed.ncbi.nlm.nih.gov/38214630/