Functional Neurological Disorders - discussion thread

Thanks. I see that and quite understand that there may be circumstances where symptoms experienced might be reasonably described in such terms. The question which arises is whether the term is intended to be confined to such cases or whether it is intended to, or will, cover the idiopathic cases formerly described as functional or conversion disorder. We know how some thrive on obscurity concealed behind imposing words.

 

As mentioned in my reply to dave30th, WHO and TAG Mental Health do not set out in the brief ICD-11 browser description texts what they currently understand by the term "Dissociative" which is a legacy term carried forward from ICD-10. So I cannot determine whether the WHO conceptualises "Dissociative" as "the same old dissociative or conversion disorder" or whether WHO's conceptualisation of the term has evolved over the years.

 

Extracted from 2016 CDDG draft texts.

Caveat: draft not yet finalized.

The Disorder class name was subsequently revised to Dissociative neurological symptom disorder. The disorder block was subsequently secondary parented under the neurology chapter.

As no more recent draft is available, I cannot confirm whether any reference to secondary parenting has been included in the draft text's most recent iteration.

Posted under Fair Use. Please do not publish or link to elsewhere.

 

Dissociative neurological symptom disorder (6B60)

is excluded under Disorders of bodily distress or bodily experience

which is the disorder block under which

6C20 Bodily distress disorder
6C21 Body integrity dysphoria

are located.

 

For DSM-5, the Task Force remove the requirements for a psychological stressor to be present to meet the Conversion disorder (Functional neurologic symptom disorder) criteria and the diagnosis can be specified as either:

With psychological stressor: (specify stressor).
Without psychological stressor

 

From my archived content:

(The content appended in blue is longer available on the Orange ICD-11 platform as the platform was moved to a new domain several years ago and some of the earlier Proposals and comments on those Proposals were lost in the migration process.)

From the ICD-11 Beta Proposal Mechanism, January 2015.

At this point, TAG Neurology had dragged a number of categories into the Beta draft's Neurology chapter that had hitherto had equivalents in the ICD-11 Beta draft's Dissociative disorders block.

One of these proposals had been for a "Functional disorders of the nervous system" block under which it was proposed to locate a number of disorder categories. These were intended by TAG Neurology's chair to replace the terminology being used in the Mental disorders chapter up to that point and to remove the "Dissociative" element.

Shakir and colleagues had even put out a couple of papers stating that these new Functional neurological categories would be included under Neurology for ICD-11.

Below, Dr Geoffrey Reed (Senior Project Lead for revision of the Mental disorders chapter), proposed in January 2015 to delete these new disorder categories and posted a rationale is support of their not remaining in the Neurological chapter.

Their deletion from the Neurology chapter was swiftly implemented and these categories were dragged back kicking and screaming into the sole domain of the Mental disorders chapter.

It wasn't until June 2018, that Dr Reed actioned the secondary parenting of the Dissociative neurological symptom disorder term and its subclasses under the Neurology chapter.

Although FND is not my primary area of advocacy, it was fascinating to observe the turf war playing out between the internal Senior Project Lead for revision of the Mental disorders chapter, the external Topic Advisory Group for Neurology (or at least its chair) and the ICD Revision Steering Group during the 7 or so years of the Alpha and Beta drafting stages, the shunting back and forth and the multiple changes of disorder names.

-------------------------------

ICD-11 Beta Draft Proposal Mechanism

January 10, 2015

Proposal

Functional disorders of the nervous system


Delete Entity Proposal

Proposal for Deletion of the Entity

Proposal Status: Submitted

Functional disorders of the nervous system

Rationale
This grouping should be deleted.

These are by definition not neurological conditions, as indicated by the phrase included in the definitions provided: 'in which there is positive evidence of either internal inconsistency or incongruity with other neurological disorders'.

If there is no evidence of a neurological mechanism or etiology, the rationale for including these in the classification of neurological disorders is unclear to say the least.

In contrast, these have always been viewed as mental disorders (from the days of Sigmund Freud), and there is no evidence about their etiology or mechanism that is inconsistent with that formulation.

Prior to ICD-10, these conditions were conceptualized as Conversion Disorders. This terms is considered obsolete because it refers to a psychodynamic mechanism that is theoretical and not ideally descriptive. ICD-10 offered a transitional title, calling them Dissociative [conversion] disorders.

For ICD-11, the proposals for Mental and Behavioural Disorders refer to these as Dissociative disorders, dropping the 'Conversion' part of the term.

Dissociative disorders are defined descriptively, as 'characterized by disruption or discontinuity in the normal integration of memories of the past, awareness of identity, immediate sensations, and control over bodily movements that are not better explained by another mental and behavioural disorder, are not due to the direct effects of a substance or medication, and are not due to a neurological condition, sleep-wake disorder, or other disorder or disease. This disruption or discontinuity may be complete, but is more commonly partial, and can vary from day to day or even from hour to hour.' There is not basis for suggesting that this formulation is inconsistent with the phenomena proposed for inclusion here as 'Functional clinical forms of the nervous system'.

The fact that neurologists may be asked to evaluate these conditions is not an adequate rationale for defining them as neurological disorders, nor are concerns about reimbursement policies that are unwisely based on divisions among specialists' scope of practice based on ICD chapters.

The Mental Health TAG is aware that there is a vocal group of advocates for this terminology among neurologists. In fact, this terminology was included as alternate terminology in DSM-5. However, in DSM-5, these are still very clearly classified as Mental disorders.

Similarly, these terms can be added as inclusion terms to the equivalent categories in the Mental and behavioural disorders chapter.

In spite of its popularity among at least some neurologists, this terminology is currently viewed in psychiatry as obsolete, and based on a mind-body split (division between 'organic' and 'non-organic') we are elsewhere attempting to remove from the ICD-11. The implied contrast is between a 'real' (medical) disorder and a 'functional' (psychiatric) disorder.

A further problem with this terminology is its inconsistency with WHO's official policy use of terminology related to 'functioning' (function, functional), as defined in the ICF.

In some instances of the use of the term 'functional' in other parts of proposals for ICD-11, it is not clear that the proposals use the term 'functional' in this same sense, or if they mean something close to 'idiopathic'. However, it is quite clear that what is meant in this group of proposals is 'without neurological explanation or plausible or demonstrable etiology'.

However, this terminology is in any case problematic. In addition to requesting that this group of categories be deleted from the classification and instead integrated appropriately as inclusion terms in the chapter on Mental and Behavioural Disorders, the Mental Health TAG requests that the Classifications Team examine other uses of the term 'functional' in proposals for ICD-11 and consider either appropriate parenting in Mental and behavioural disorders or alternative terminology.

The Mental Health TAG also requests that this issue be revised by the Revision Steering Group (and or Small Executive Group) in order to arrive at an ICD-wide solution as efficiently as possible. The Mental Health TAG requests that this issue not simply be arbitrated by the same TAGs that have made these proposals.

--On behalf of Mental Health TAG

References
There are no references attached for this proposal item
​

--------------------------

And on January 12, 2015, Dr Reed added a further comment for TAG Neurology and the Revision Steering Group:

An alternative could be that this grouping could be retained but with appropriate primary parenting to Dissociative disorders in the Mental and behavioural disorders chapter.

Entities of 'functional clinical forms' have already been proposed to be added in the appropriate categories in Dissociative disorders. Most of them are included in Dissociative motor disorder, though several are included in Dissociative disorder of sensation. One is included in dissociative amnesia.

However, the name of these entries-- i.e., functional disorders-- remains an issue as described above, which should be resolved at the ICD-wide level.

Note that if the solution selected involved retaining these categories, perhaps renamed, but primary parenting them appropriately in Dissociative disorders, it will be more appropriate to move the secondary parented categories to the main Disease of the nervous system chapter rather than listing them in clinical forms.

--On behalf of the Mental Health TAG

Geoffrey Reed 2015-Jan-12 - 09:14 UTC​

 

Re Lady Gaga's explanation-- I agree that it is a very normal response especially from people who have a strong need to be seen and heard (ie most people). We all write our stories as we go through life.

This is actually an example of the 'uncertainty principle' I think that is discussed in another thread on Chalder. We look for explanations to make sense of our experience. Rather than accepting that stuff just happens to us -- it has to have a reason-- giving our struggles more meaning I think. That's all fine until someone takes their personal story and uses it as some objectively true thing-- the reality. Rather than leaving space open to not knowing the what, why, how of things and accepting that.

Being uncertain -- not having an explanation is somehow less likely in situations where people share their story -- though they may hold less certain thoughts privately. But Lady Gaga's story would not have been so compelling enough to interest Oprah otherwise without it I expect.

In other words I don't think these shared tales do anyone a service (when shared for big public consumption where people are supposed to believe in the tale). And while the BPS cabal pick up and use these for their own propaganda it still remains that for LG her trauma may well need (or have had) psych therapy and her fibromyalgia will still need some medical treatment to alter whatever is physiologically creating the condition. If psych therapy cured these conditions we'd all have gotten help and be getting on with our lives by now.

Yet the BPS cabal would like us to think they have succeeded in contributing to moving us in the direction of health and if we do find some useful treatment they will happily take credit for all of it.

Psychologists need science training. As a group they seem to be leaders in creating and following all manner of fad ideas that will eventually go the way of extreme traumatic memory recovery (Satanic rituals and cannibalism are everywhere Oh My).
Edit: sp

 

Some years ago, I recall seeing a slick website for a spoof pharmaceutical drug.

I sometimes think it would be fun to create a site for a non existent psych disorder complete with criteria set to see just how long it takes before this "disorder" starts appearing in the literature.

 

This is the stuff that makes it necessary to forbid medical professionals from lying, even by omission or exaggeration, to patients. There may be some rare circumstances where it is beneficial but here an entire ideology is forcing its way through medical practice by abusing this privilege with ill-intent, same way it did in the past and will do in the future unless it's explicitly forbidden.

This isn't something that should be necessary but this will make it, as it's moving away from individual circumstances and onto applying to literally tens, even hundreds, of millions. It is essentially the same basis by which the ME-BPS model bullied its way through, by making baseless assertions and lying directly to patients, even to participants in clinical trials, and about them.

Nearly every rule ever written down exists because some jackass did something nobody thought would need to be written down. Even blatantly unethical stuff needs to be explicitly written down and restrictions imposed when abuse is rampant.

Because the most likely consequence of this will be more distrust in modern medicine that may outdo even the anti vaccination movement, or at best make it much worse. This stuff here is exactly why that trust is limited and people go to alternative medicine in the first place, all because medicine is stuck in its acute phase and chooses instead to embrace the worst of alternative medicine, BS-based explanations and rituals, along with the worst of modern medicine: doing it cold and uncaring through deliberate lies and deceit, indifferent to real outcomes and deaf to every complaint.

Point is, this will hurt millions for absolutely no gain, way beyond even those currently suffering from this gaslighting. Extreme foolishness, especially as it's massively more expensive over time than actually doing the work that is rejected in the first place. Ideology has no place in science, even less so in medicine. This is why.

 

Pushing FND from a neurological category into mental health is a ridiculous thing to do when you are dealing with neurological signs and symptoms. Without saying it specifically they are assuming that medically unexplained means it can never be explained within an organic framework.

So what we have is a neurological sign, like a seizure, which someone has decided is psychogenic because they assume everything about how the brain works is already known. If it is then moved away from neurology then no neurologist will be paid to look at it in those countries where tests are only done if they are appropriate to the disease.

It assumes that calling it psychological is a carved in stone fact despite the appalling track record of neurological diseases which were proved to be organic after many years of psychiatrists "knowing" they are caused mental problems.

Also signs are only incongruent if you do not know why the combination happens. The cardinal trilogy of myotonic dystrophy is myotonia, cataracts and frontal balding.

 

Hi @Mithriel

Generally speaking I agree with the rest of what you say but I'd qualify this statement. I think they (BPS) believe that because it is neurological that while it is physical it is also to do with the brain and therefore to do with the mind and therefore the physical symptoms can be addressed using techniques designed to change your thinking.

I have trouble sorting out exactly what they believe as it evolves and changes to try and address inherent contradictions and well founded criticism but I think this is where we're at.

 

Snowdrop, I meant the people doing the ICD-11 who are refusing to connect FND to the neurology section

So they are saying that if there is no positive evidence now there never will be. It is a very definite statement about something that is still nebulous. The neurological mechanism or etiology is something that a doctor decides about whereas the symptoms and signs are definitely neurological. A seizure or a paralysed arm is a neurological problem, a doctor decides that it doesn't fit his present knowledge so they want the ICD-11 to make a positive pronouncement that these patients have a mental illness and must be treated as such. It gives far to much weight to a theory that is full of mays and mights.

 

Ah, thank-you, I missed that. I am completely lost when faced with the various codes and their explanations. Apologies for the confusion on my part.

 

The WHO approved secondary parenting of Dissociative neurological symptom disorder (DNSD) to the Neurology chapter in 2018.

(I consider this to be tokenism, given the stated position of WHO and the Project Lead for the Mental disorders chapter. Nevertheless, DNSD has been secondary parented under Neurology - though Stone and Shakir would likely have preferred to have had it the other way round, ie primary parented under Neurology and secondary parented under Mental disorders.)

You've said in an earlier post:

Just to clarify for readers who might not have read all the earlier posts in this thread:

The Dissociative disorders are in the Mental disorders chapter of ICD-10. From the beginning of the development process for ICD-11, they had been retained in the Mental disorders chapter, through the initial iCAT "start-up" stage and through the Alpha and Beta drafting stages. So their legacy chapter location is under Mental disorders (as it is for DSM-5).

TAG Neurology had pulled the block of disorders that sat under the ICD-11 Beta draft Dissociative disorders and relocated these (with slightly different nomenclature and under a renamed parent block) within the Neurology chapter without the consensus of the ICD Revision Steering Group and lead Project Manager for the revision of the Mental disorders chapter.

These disorder categories were subsequently restored back to their legacy location in the Mental disorders chapter and later, secondary parented to the Neurology chapter.

I don't want to sound as though I am splitting hairs, but

if read out of context with the earlier posts and the history of ICD-11's handling of these DNSD categories, might inadvertently give the impression that these DNSD categories had originally been Neurological chapter disorders in ICD, which is not the case.

Although there has been some criticism elsewhere of perceived naivety among FND orgs around the issue of the secondary parenting of DNSD under Neurology, some international orgs are well aware of the tug of war that has taken place between WHO/ICD Revision and an external clinical lobby group led by Shakir and Stone, and they also consider the secondary parenting to be tokenism on the part of WHO/ICD Revision (who have made their position very clear via comments and decisions in the Proposal Mechanism platform). As with our ME orgs, there are differences of approach and position between the FND orgs.

 

Thanks for clarifying that. Though it seems worse that the people pushing FND actually want it to be considered primarily neurological (which it should be because the primary symptoms and signs are neurological) but the ICD 11 want it called dissociative for strange reasons but then insist because it is called dissociative it must be a primarily mental disorder.

I am an exorcist so I want epilepsy to be considered demonic possession.

 

I think tradition plays a big role too. If it's always been listed as a psychiatric illness, then the legacy category would presumably stay in place until there's strong evidence to require a shift.

 

Yes true but also such warped logic. Look at autism, epilepsy and even being gay how they have previously been listed.

Dumping categories.

Surely the starting position should be non psychiatric or dont know not the other way around.

 

For any who do not know it, this paper by Kendell from 1991 might be of interest . It discusses the origins of the term "functional". Kendell was a professor at Edinburgh, home of Stone.

https://sci-hub.se/10.1192/bjp.178.6.490

It expresses some of the views seen in early Wessely and Sharpe

 

I don't think WHO coding (and things based off it) work that way. My understanding is that legacy wins out until there's conclusive evidence either way.

 

Yes true but whats the starting point. When its don't know or cant be bothered finding out its default to psychiatric. Yet how can there ever be any conclusive evidence of "psychiatric" to commence the legacy?

How many times do they have to make this mistake when evidence has eventually proven don't know categories to be organic.

How about being gay, its neither psychiatric or a disease but was previously listed as a mental illness so how can psychiatry still be considered anything other than pseudo science in 2020.