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

[Peter T]

Maybe what I'm thinking about is whether the concepts "functional disorder" and "functional neurological disorder" have some justification, even if their application to ME/CFS is invalid.

They potentially relate to some meaningful clinical groupings, for example people displaying non epileptic seizures, but ‘functional’ is generally used as a synonym for ‘psychogenic’ which is not evidenced and are increasingly lumped together so people with IBS are offered the same treatment as people with non epileptic seizures or people with ME/CFS. Usually this is directive CBT and exercise supported by studies as bad as those used to justify CBT/GET for us.

Also there seems to be currently empire building with even when an underlying biomedical condition is identified they want to hang onto the idea of a concurrent functional disorder, as if somehow having a stroke or MS means you are more at risk of an additional functional condition.

Though there are meaningful clinical groupings within the ‘functional’ label and many feel validated that their very real symptoms are being validated, I strongly believe that the term functional either reflects the diagnostician’s theoretical biases or is used rather than admit that we just don’t know.

 

[Sean]

Maybe what I'm thinking about is whether the concepts "functional disorder" and "functional neurological disorder" have some justification,

How can we determine if they do or not?

Because, thus far, those making this claim have offered no robust proof of it.

 

[DigitalDrifter]

At this stage there is no possibility left that they are merely incurious, ignorant, or incompetent. That excuse simply does not exist.

Could be malicious incompetence.

 

[Sean]

Or malicious non-compliance.

 

[forestglip]

Merged posts
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Long COVID vs. functional neurological disorder: Punching down
Shelley Dawson

Chapter from book Clashing Vulnerabilities, Disability and Conflict

[Line breaks added]

Abstract
Shelley Dawson’s chapter documents a situation where clashing vulnerabilities are not only not recognised; they are vigorously disavowed and denied. She discusses how a new emerging diagnosis, Long COVID, is being formulated in distinction to another neurological condition, functional neurological disorder (FND).

Dawson examines how people associated with similarly medically ambiguous (and socially suspicious) neurological conditions such as myalgic encephalomyelitis/chronic fatigue syndrome and, now, Long COVID, are treating FND as what in language studies is called a “false friend” (embarazada in Spanish doesn’t mean “embarrassed”. It means “pregnant”).

Web | Paywall

 

[Liie]

Long COVID vs. functional neurological disorder: Punching down
Shelley Dawson

Chapter from book Clashing Vulnerabilities, Disability and Conflict

Podcast with the author: https://www.sciencewritenow.com/lis...tive-of-functional-neurological-disorders-fnd

She is presented like this:

Dr Shelley Dawson is a sociolinguist/discourse analyst [...] She investigates functional neurological disorder from a discourse perspective

The rest of the podcast participants seem to be FND people.

 

[Liie]

Long COVID vs. functional neurological disorder: Punching down
Shelley Dawson

Chapter from book Clashing Vulnerabilities, Disability and Conflict

I'm curious about what the discourse analyst has to say. Does she talk about how people with ME/CFS and long covid are mean because they don't accept an FND diagnosis?

@forestglip Do you have access? Have you had a look? Can you give a short synopsis?

 

[forestglip]

@forestglip Do you have access? Have you had a look? Can you give a short synopsis

Sorry, no, I can only see the abstract that was copied.

 

[Jonathan Edwards]

Seems that for these people "Language matters' but not arithmetic. Th e intro says:

But an estimated 4 to 12 out of 100,000 people develop FND, and it’s the second most common presentation in neurology clinics worldwide.

Now that is about 1 in 10,000 people with FND (could be about right). But MS is about 1 in 1000 and headache about 1 in 1, of which maybe 1 in 10 see a neurologist, and peripheral neuropathy is about 1 in 20. So how does FND come to be the second most common...

Give me a policeman over a dyslingual/socialist anacourse any day.

 

[forestglip]

But an estimated 4 to 12 out of 100,000 people develop FND, and it’s the second most common presentation in neurology clinics worldwide.

Now that is about 1 in 10,000 people with FND (could be about right). But MS is about 1 in 1000 and headache about 1 in 1, of which maybe 1 in 10 see a neurologist, and peripheral neuropathy is about 1 in 20. So how does FND come to be the second most common...

It seems to be a common claim. Two examples:

Functional Neurological Disorder: Historical Trends and Urgent Directions, 2023, Journal of Neurology Research (Link)

The worldwide distribution of FND has been rapidly increasing. The incidence rate of FND between 1976 and 2010 was 4 to 12 per 100,000 patients per year [21, 47-49] and the prevalence was 50 per 100,000 population [50]. In 2010, FND was found to be the second most common reason for new outpatient neurological evaluation [51].

Seminars in General Adult Psychiatry, p.369, 2024 (Link)

It is commonly stated that FND is the second most common disorder in neurology outpatient clinics, echoing the prescient observations of Sydenham. although this may only be strictly true when a broad view of functional symptoms is taken.25,26 FND is certainly common in emergency departments, particularly when presenting in similar fashion to acute stroke, cauda equina syndrome or epileptic seizure.27 There are some estimates that suggest that 1 in 10 acute neurology admissions are for FND. 28 Despite these often acute presentations, it is not infrequent for patients to wait several years after the onset of their symptoms to receive a diagnosis of FND.20

Of the studies I looked at, they all seem to cite the same study:

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Who is referred to neurology clinics?--the diagnoses made in 3781 new patients, 2010
J Stone, A Carson, R Duncan, R Roberts, C Warlow, C Hibberd, R Coleman, R Cull, G Murray, A Pelosi, J Cavanagh, K Matthews, R Goldbeck, R Smyth, J Walker, M Sharpe

Objective
Information on the nature and relative frequency of diagnoses made in referrals to neurology outpatient clinics is an important guide to priorities in services, teaching and research. Previous studies of this topic have been limited by being of only single centres or lacking in detail. We aimed to describe the neurological diagnoses made in a large series of referrals to neurology outpatient clinics.

Method
Newly referred outpatients attending neurology clinics in all the NHS neurological centres in Scotland, UK were recruited over a period of 15 months. The assessing neurologists recorded the initial diagnosis they made. An additional rating of the degree to which the neurologist considered the patient's symptoms to be explained by disease was used to categorise those diagnoses that simply described a symptom such as 'fatigue'.

Results
Three thousand seven hundred and eighty-one patients participated (91% of those eligible). The commonest categories of diagnosis made were: headache (19%), functional and psychological symptoms (16%), epilepsy (14%), peripheral nerve disorders (11%), miscellaneous neurological disorders (10%), demyelination (7%), spinal disorders (6%), Parkinson's disease/movement disorders (6%), and syncope (4%). Detailed breakdowns of each category are provided.

Conclusions
Headache, functional/psychological disorders and epilepsy are the most common diagnoses in new patient referral to neurological services. This information should be used to shape priorities for services, teaching and research.

Web | Clin Neurol Neurosurg | Paywall

 

[Jonathan Edwards]

It seems to be a common claim. Two examples:

But there are two completely incompatible claims here!!
One that it is rare and one that it is the second most common.

 

[Liie]

But there are two completely incompatible claims here!!
One that it is rare and one that it is the second most common.

It seem like a weird contradiction. One explanation:

This statement:

In 2010, FND was found to be the second most common reason for new outpatient neurological evaluation [51].

...is supported with a source which says this:

The commonest categories of diagnosis made were: headache (19%), functional and psychological symptoms (16%), ...

To me it seems like a misinterpretation of "functional and psychological symptoms" to always imply FND. So they hugely exaggerate how common FND is.

 

[Yann04]

Didn’t David write about some inflated FND prevalence claims coming from Carson or Stone.

 

[Liie]

Didn’t David write about some inflated FND prevalence claims coming from Carson or Stone.

It seems to be exactly this!

Correspondence: Inaccurate reference leads to tripling of reported FND prevalence - PMC

Perez et al asserted that FND is the "2nd most common" diagnosis in outpatient neurology. Stone et al (2010), cited by Perez et al, does not support the “2nd most common” claim. In Stone et al, a broad “functional/psychological” category was the ...

pmc.ncbi.nlm.nih.gov

Also signed by among others Jonathan Edwards, Mady Hornig, Brian Hughes and David Putrino.

 

[forestglip]

Didn’t David write about some inflated FND prevalence claims coming from Carson or Stone.

Oh yeah, about this very claim/study:

Finally, Our Letter on Inflated Claims of FND Prevalence Is Published – Trial By Error

These untrue claims about the Scottish Neurological Symptoms Study (SNSS)—specifically, that the prevalence of FND among outpatient neurology clinics was 16% and/or that it the second-most-common diagnosis–have been repeated in more than 50 papers in the last dozen year.

Of the 16% in the SNSS identified as having FND, two-thirds were identified as having “psychological” diagnoses and symptoms that could not fully be explained by neurological disease. However, as we noted in our letter, there is no evidence that any of these additional 10% met or could have met the rule-in criteria for FND. The fact that their symptoms could not fully be accounted does not justify a post-hoc, categorical reinterpretation of their diagnoses as FND.

That ultimately led to a letter that was finally published this week by the journal NeuroImage: Clinical after a somewhat tortuous journey. I have posted it in full below.

Previously discussed: https://www.s4me.info/threads/neuro...-edwards-hallet-stone-et-al.21323/post-501444

Edit: crossposted with Liie.