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

[SNT Gatchaman]

I know that neurologists are not all neurosurgeons. But are all neurosurgeons also neurologists?

They're quite distinct, with completely different training pathways, although they can gain experience in each others' domain during their training.

Both of course need to know the neurological system and they often work together. Both may investigate with similar imaging techniques, but neurologists would generally do more with eg CSF, blood and genetic evaluations.

As a first approximation: neurologists treat problems with medications and neurosurgeons treat by eg resecting tumours, draining collections (blood/pus/CSF) or shunting the CSF pathways. With either some of the skill is in knowing when to not do those things.

(There are also interventional neuroradiologists, who operate via tiny catheters in blood vessels. They are more closely aligned to neurosurgery.)

 

[Arnie Pye]

Thank you, @SNT Gatchaman

 

[ToneAl]

I once raised the issue of neurologists treating ME as though it is not physical with a ME expert and was told it is common for "neurologists not to like conditions they cannot see." Sometimes abnormalities such as encephalopathy are not visible on MRI, which might make a majority of them want to opt for a somatic explanation for the patient's symptoms instead.

Aren't most neurological diseases not visible on mri initially. Like parkinson's ms and als in ⁰⁰early stages.

I remember reading once on the the net which is also a book i think this young girl had a rare autoimmune brain disease initial diagnosis conversion disorder but someone later diagnosed her correctly otherwise she would have died. I think it was called brain on fire

 

[SNT Gatchaman]

I think it was called brain on fire

Yes, the disease is called anti-NMDA receptor encephalitis. It's very striking and often devastating. Some symptom overlap with ME/CFS but often florid psychotic features and I don't think PEM has ever been described as a feature.

I've only seen a couple of cases, most recently a couple of years ago. As noted to be common by the Wikipedia entry, we found an ovarian teratoma (dermoid) in that teenager.

Here is a link with pictures of what the brain can look like on MRI with this. (Our case did not show imaging abnormality).

Regarded as a paraneoplastic syndrome, the pathology is thought to in part relate to breakdown of the blood-brain barrier.

An interesting point in the Wikipedia entry —

The recovery process from anti-NMDAR encephalitis can take many months. The symptoms may reappear in reverse order: The patient may begin to experience psychosis again, leading many people to falsely believe the patient is not recovering. As the recovery process continues on, the psychosis fades. Lastly, the person's social behavior and executive functions begin to improve.

 

[livinglighter]

Aren't most neurological diseases not visible on mri initially. Like parkinson's ms and als in ⁰⁰early stages.

I remember reading once on the the net which is also a book i think this young girl had a rare autoimmune brain disease initial diagnosis conversion disorder but someone later diagnosed her correctly otherwise she would have died. I think it was called brain on fire

I wasn't aware that most neurological diseases aren't visible on MRI during the early stages. The symptoms of MS and Parkinson's are likely better understood, so perhaps if a neurologist initially considers conversion disorder due to nothing showing up on MRI, they may sooner rather than later want to reconsider using repeat testing if more positive signs they are familiar with develop.

ME, on the other hand, might appear similar to other brain-related conditions that do not show anything or much on MRI that explains symptoms despite length and severity.

Anti-NMDA receptor encephalitis is another condition that can get misdiagnosed as conversion disorder by investigation using only MRI. Unlike ME, I understand it can be positively diagnosed using antibody testing.

ME, for now at best, may require several non specific tests that demonstrate what is likely to be physical changes to brain functioning. But first injury needs to be considered to go down that route.

 

[ToneAl]

Yes, the disease is called anti-NMDA receptor encephalitis. It's very striking and often devastating. Some symptom overlap with ME/CFS but often florid psychotic features and I don't think PEM has ever been described as a feature.

I've only seen a couple of cases, most recently a couple of years ago. As noted to be common by the Wikipedia entry, we found an ovarian teratoma (dermoid) in that teenager.

Here is a link with pictures of what the brain can look like on MRI with this. (Our case did not show imaging abnormality).

Regarded as a paraneoplastic syndrome, the pathology is thought to in part relate to breakdown of the blood-brain barrier.

An interesting point in the Wikipedia entry —

Prion disease is another that can be misdiagnosed as conversion disorder if work up is not thorough enough.
There are numerous posts regarding this on this forum

 

[Sly Saint]

eta:
"our voices are being head in parliament"

freudian slip?

 

[Andy]

From the linked page in the tweet,

https://www.fndhope.org.uk/we-need-your-help-in-writing-to-your-mp-to-request-attendance-to-our-inaugural-fnd-parliamentary-awareness-day/

"We’ll be hosting our event on 8th February to raise awareness of FND and to discuss the difficulties our community faces in getting treatment. We would like to thank Ben Lake MP for sponsoring this event, following our meeting with him last year."

"FND is a problem with the functioning of the nervous system and how the brain and body send and receive signals. People living with FND experience life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that of MS. Common symptoms include seizures, paralysis, speech difficulties and motor dysfunction. It is the second most frequent reason for a neurology outpatient appointment and impacts up to 100,000 adults and 20,000 young adults in the UK.

Those with FND face multiple challenges when trying to access effective treatment and care. Yet there are no specific NICE or SIGN guidelines for FND to address either diagnosis or treatment, impacting provision of care. FND Hope UK recently surveyed, through a Freedom of Information request, all of the Clinical Commissioning Groups and Health Boards in the UK as to their current provision of multidisciplinary rehabilitation for people with FND. We found that:

50% of UK health boards had no specific agreement to treat FND and a shocking 9% said that they did not accept referrals for treatment.

Only 35% said they had plans to improve their services for people with FND and only 35% said they were potentially interested in accessing further education or support to improve services.

By attending FND Hope UK’s Parliamentary Awareness Day, you can learn more about their work towards a dedicated FND care pathway at every UK neuroscience centre, hear directly from people living with FND about the impact the condition has, and learn about current and future clinical research to improve patient outcomes.

The drop-in event will run from 10-11.30 am on 8th February in the Jubilee Room, opening with short presentations from FND expert Professor Mark Edwards and Alison Newland, our community representative from 10 – 10.30am. This will be followed by a drop-in session from 10.30-11.30 am where you can join at your leisure to talk to experts and volunteers from FND Hope UK."


So that's where Mark Edwards has got to, from https://www.kcl.ac.uk/people/mark-edwards

"He recently led the development of a national exemplar pathway for Functional Neurological Disorder for the National Neurology Advisory Group on behalf of NHS England. He was appointed to his new post at Kings in September 2022. He has published over 300 peer reviewed publications and is author of the Oxford Specialist Handbook of Parkinson’s Disease and Other Movement Disorders.

He is President of the Association of British Neurology Movement Disorders Group, International Executive Committee member of the International Parkinson’s and Movement Disorders Society, Board Member of the Functional Neurological Disorder Society, Associate Editor of the European Journal of Neurology, and medical advisor for FNDHope, the UK Dystonia Society and the British Association of Performing Arts Medicine."

 

[Sean]

So that's where Mark Edwards has got to, from https://www.kcl.ac.uk/people/mark-edwards

"He recently led the development of a national exemplar pathway for Functional Neurological Disorder for the National Neurology Advisory Group on behalf of NHS England. He was appointed to his new post at Kings in September 2022.

Kings College London does seem to feature prominently in the ongoing disaster that is the current version of pyschosomatics.

 

[Andy]

From Twitter
"Just had this patient who yet again was misdiagnosed with #FND. Patient did not have FND: she had #POTS, #EhlersDanlosSyndrome, large fiber peripheral #neuropathy and #MCAS. Misdiagnosis with FND is a problem in our field that needs to be addressed."

 

[dave30th]

It is the second most frequent reason for a neurology outpatient appointment and impacts up to 100,000 adults and 20,000 young adults in the UK.

This is false, as I have documented. This figure includes many people who do not have the "rule-in" signs now required for an FND diagnosis.

 

[ToneAl]

Kings College London does seem to feature prominently in the ongoing disaster that is the current version of pyschosomatics.

Mark Edwards the bayesian witchdoctor.

 

[Hutan]

Mark Edwards the bayesian witchdoctor.

I enjoyed the phrase, but it took me a while to get the reference:
A Bayesian account of ‘hysteria’
Mark J. Edwards,1,* Rick A. Adams,2,* Harriet Brown,2 Isabel Paree ́s1 and Karl J. Friston2

This article provides a neurobiological account of symptoms that have been called ‘hysterical’, ‘psychogenic’ or ‘medically unexplained’, which we will call functional motor and sensory symptoms. We use a neurobiologically informed model of hierarchical Bayesian inference in the brain to explain functional motor and sensory symptoms in terms of perception and action arising from inference based on prior beliefs and sensory information. This explanation exploits the key balance between prior beliefs and sensory evidence that is mediated by (body focused) attention, symptom expectations, physical and emotional experiences and beliefs about illness. Crucially, this furnishes an explanation at three different levels: (i) underlying neuromo- dulatory (synaptic) mechanisms; (ii) cognitive and experiential processes (attention and attribution of agency); and (iii) formal computations that underlie perceptual inference (representation of uncertainty or precision).

Our explanation involves primary and secondary failures of inference; the primary failure is the (autonomous) emergence of a percept or belief that is held with undue certainty (precision) following top-down attentional modulation of synaptic gain. This belief can constitute a sensory percept (or its absence) or induce movement (or its absence). The secondary failure of inference is when the ensuing percept (and any somatosensory consequences) is falsely inferred to be a symptom to explain why its content was not predicted by the source of attentional modulation. This account accommodates several fundamental observations about functional motor and sensory symptoms, including: (i) their induction and maintenance by attention; (ii) their modification by expectation, prior experience and cultural beliefs and (iii) their involuntary and symptomatic nature.

 

[Sean]

This account accommodates several fundamental observations about functional motor and sensory symptoms, including: (i) their induction and maintenance by attention; (ii) their modification by expectation, prior experience and cultural beliefs and (iii) their involuntary and symptomatic nature.

I seriously question the statement that they are observations, let alone fundamental. Awful lot of interpretation and positing in there.

Confirmation bias, par excellence, even.

Where is the hard experimental evidence for this claim, and adequately refuting other possible interpretations?

Using this as an unconfirmed research hypothesis is one thing. Using it to inform clinical practice, and medico-legal and policy advice is quite another.

 

[ToneAl]

I enjoyed the phrase, but it took me a while to get the reference:
A Bayesian account of ‘hysteria’
Mark J. Edwards,1,* Rick A. Adams,2,* Harriet Brown,2 Isabel Paree ́s1 and Karl J. Friston2

There is post on this somewhere

 

[Andy]

I enjoyed the phrase, but it took me a while to get the reference:
A Bayesian account of ‘hysteria’
Mark J. Edwards,1,* Rick A. Adams,2,* Harriet Brown,2 Isabel Paree ́s1 and Karl J. Friston2

A Bayesian account of ‘hysteria’, 2012, Edwards et al

 

[ToneAl]

A Bayesian account of ‘hysteria’, 2012, Edwards et al

How do you add posts to a reply thanks

 

[ToneAl]

This account accommodates several fundamental observations about functional motor and sensory symptoms, including: (i) their induction and maintenance by attention; (ii) their modification by expectation, prior experience and cultural beliefs and (iii) their involuntary and symptomatic nature.

I seriously question the statement that they are observations, let alone fundamental. Awful lot of interpretation and positing in there.

Confirmation bias, par excellence, even.

Where is the hard experimental evidence for this claim, and adequately refuting other possible interpretations?

Using this as an unconfirmed research hypothesis is one thing. Using it to inform clinical practice, and medico-legal and policy advice is quite another.

Yes its like they can diagnose conversion disorder from physical signs eg hoovers.
Whats the scientific proof its happening amd not from unknown disease.

 

[Andy]

How do you add posts to a reply thanks

Do you mean how I did in the post you quoted?

If so, I only know how to do when using a laptop or desktop computer. If using one of those, then each post should have a post number, i.e. #136, in the bottom right of the post, next to the Like, Multiquote and Reply option. Click on that and you should see a pop-up window as in the image below (click the image to expand it).



You can then copy and paste one of the two URLs shown there. I used the second of the two options to give the link labelled with the thread title.

The multiquote option would allow you to do something similar. To use that, you would need to go to the post you wanted to link elsewhere, click on Multiquote, then go to where you want to quote that post and you should now have an "Insert Quotes..." option bottom left of your Reply 'box'. Click on that and you can insert the saved post. This though will Reply to, and quote, the post from the different thread, it won't obviously link to that thread.

If you are on mobile you can only copy and paste the URL address, as far as I know. If you want the URL for a particular post then you can click on where it says how long ago it was posted (if this is more than 24 hours it will be the time and date it was posted) and the URL then at the top of your screen will be the one directly to that post.

 

[Andy]

Trial By Error: A Letter About the Inflated Prevalence Rate of Functional Neurological Disorder

"Why does it matter if FND experts argue in one paper that the prevalence of FND among outpatients at neurology clinics is “approximately 6%” but elsewhere report that it is 16%, or even state that it is up to one-third? A key reason is that doing so undermines the credibility of the argument that FND is now a rule-in diagnosis and not a diagnosis of exclusion. Lumping together patients with and without rule-in signs in a single category risks turning FND into a wastebasket diagnosis applied to anyone with unexplained symptoms. That happened routinely with the hoary construct of “conversion disorder,” the term FND is meant to replace. Suggesting that patients without rule-in signs have FND is, in effect, misdiagnosing them. And misdiagnoses can lead to an array of unfortunate consequences.

Given that the term “functional” is now frequently used to describe any symptom or condition for which no organic cause has yet been identified, it is understandable that patients with unexplained neurological symptoms might automatically get slapped with an FND diagnosis. But the term now has a more specific and clearly defined meaning. When it comes to prevalence rates, the frequency with which investigators appear to be casually conflating “functional” and FND, as if the two were interchangeable, is likely to generate serious confusion for patients and clinicians alike. In medicine, words matter."

https://www.virology.ws/2022/07/07/...nce-rate-of-functional-neurological-disorder/

From the linked page in the tweet,

https://www.fndhope.org.uk/we-need-your-help-in-writing-to-your-mp-to-request-attendance-to-our-inaugural-fnd-parliamentary-awareness-day/

"We’ll be hosting our event on 8th February to raise awareness of FND and to discuss the difficulties our community faces in getting treatment. We would like to thank Ben Lake MP for sponsoring this event, following our meeting with him last year."

"FND is a problem with the functioning of the nervous system and how the brain and body send and receive signals. People living with FND experience life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that of MS. Common symptoms include seizures, paralysis, speech difficulties and motor dysfunction. It is the second most frequent reason for a neurology outpatient appointment and impacts up to 100,000 adults and 20,000 young adults in the UK.

Those with FND face multiple challenges when trying to access effective treatment and care. Yet there are no specific NICE or SIGN guidelines for FND to address either diagnosis or treatment, impacting provision of care. FND Hope UK recently surveyed, through a Freedom of Information request, all of the Clinical Commissioning Groups and Health Boards in the UK as to their current provision of multidisciplinary rehabilitation for people with FND. We found that:

50% of UK health boards had no specific agreement to treat FND and a shocking 9% said that they did not accept referrals for treatment.

Only 35% said they had plans to improve their services for people with FND and only 35% said they were potentially interested in accessing further education or support to improve services.

By attending FND Hope UK’s Parliamentary Awareness Day, you can learn more about their work towards a dedicated FND care pathway at every UK neuroscience centre, hear directly from people living with FND about the impact the condition has, and learn about current and future clinical research to improve patient outcomes.

The drop-in event will run from 10-11.30 am on 8th February in the Jubilee Room, opening with short presentations from FND expert Professor Mark Edwards and Alison Newland, our community representative from 10 – 10.30am. This will be followed by a drop-in session from 10.30-11.30 am where you can join at your leisure to talk to experts and volunteers from FND Hope UK."


So that's where Mark Edwards has got to, from https://www.kcl.ac.uk/people/mark-edwards

"He recently led the development of a national exemplar pathway for Functional Neurological Disorder for the National Neurology Advisory Group on behalf of NHS England. He was appointed to his new post at Kings in September 2022. He has published over 300 peer reviewed publications and is author of the Oxford Specialist Handbook of Parkinson’s Disease and Other Movement Disorders.

He is President of the Association of British Neurology Movement Disorders Group, International Executive Committee member of the International Parkinson’s and Movement Disorders Society, Board Member of the Functional Neurological Disorder Society, Associate Editor of the European Journal of Neurology, and medical advisor for FNDHope, the UK Dystonia Society and the British Association of Performing Arts Medicine."

Trial By Error: Once More Regarding Inflated FND Rates–and a Reprise of a Letter to a Yale Neurologist

"Last July, I sent a letter to Benjamin Tolchin, a neurologist at Yale, about the statement, in a 2021 paper for which he was the lead author, regarding prevalence rates for functional neurological disorder (FND). Last month, I sent it again. I’ve still had no response.

I am reposting it below because related claims about the prevalence of FND has recently been highlighted by the charity FND Hope UK. The charity organized an FND Parliamentary Awareness Day, which took place on Wednesday of this week. Before the event, the organization sent out an appeal for people to write to their member of Parliament. The sample letter included in the appeal stated categorically that FND is “the second most frequent reason for a neurology outpatient appointment.”"

https://www.virology.ws/2023/02/11/...-a-reprise-of-a-letter-to-a-yale-neurologist/