Functional Neurological Disorders - discussion thread

The Journal of Neuropsychiatry and Clinical Neurosciences
Volume 32, Issue 1
Special Issue: Functional Neurological Disorder
January 2020
https://neuro.psychiatryonline.org/toc/jnp/32/1

 

On the topic of treatments:

So there is a total absence of treatments that are likely to be tested under conditions of adequate control of subjective bias.

The comment about placebo as therapy itself is hilarious.

 

I think you mean horrifying. Try reading the cited paper.

 

This is the first sentence from the opening editorial of the special issue, which is not behind a paywall:
https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.19090204

"Functional neurological disorder (FND), also known as conversion disorder, constitutes individuals with neurological symptoms precipitated and/or perpetuated by maladaptive cognitive, affective, behavioral, psychological, and perceptual processes."

So there it is--for all the noises about "functional," it seems by this definition to be the same old conversion disorder.

 

Exactly. Claims that this is a new approach should be seen as marketing for an empire building project (or perhaps a cost savings project). The only thing that's new is the language used, and some feeble attempts to give credibility to the concept with neuroimaging studies. The people involved have probably already decided what the problem is and how the solution will look like, rather than trying something genuinely new.

That they mix two nebulous and conceptually difficult ideas like placebos as treatment and FND does not bode well.

The sad thing is that the people with FND I've talked to about this seem so desperate that they appear willing to overlook all the problems just to have crumbs.

 

"Why won't these desperate people swallow our BS?". It's becoming one of the dominant themes in the past few years, frustration at explicit dissent from patients. It isn't even subtle anymore, there are explicit discussions over how to deceive patients, how to approach the topic and mislead over even the meaning of words.

Medicine "requires" informed consent. Bad psychology overruling medicine somehow is exempt from that. All the power, absolutely none of the requirements, obligations or accountability. As intellectually bankrupt as it is ethically bankrupt.

 

Honestly about half the papers on FND explicitly say so. Conferences and talks pretty much all do. It would be impressive if it wasn't so damn immoral. Doubleplusungood.

 

No need to engage with but the fact of FND explicitly and strictly meaning conversion disorder, and with no factors other than "psychological" (whatever that means), is clearly not well-understood even by FND patient organizations. Really awful to mislead vulnerable people this way, from a position of absolute authority no less. Fits well with contempt for patients who do their own research, it takes reading the literature to know the true nature of this nonsense.

https://twitter.com/user/status/1220078875054673920

 

must be a shock for the patient groups to see that they have conversion disorder after all.

 

@dave30th some patients accept and believe the idea that emotions are the root cause of their illness. Like Lady Gaga recently. Whether these patients are mistaken or correct is a bit hard to tell. I have however just read a twitter thread by a German emergency doctor that visited a man at home with severe breathing problems, who apologized and said it's psychosomatic and that he was going to the psychosomatic clinic soon but it was currently so bad he couldn't wait and just needed anti anxiety medication. The man actually had blood oxygen levels at 50% and abnormal heart sounds and at first didn't want to believe he had heart disease (a heart valve problem if I remember right).

 

What did Lady Gaga say recently?

 

Which is why the WHO and the ICD Revision Mental Health Topic Advisory Group's Lead Managing Editor wished to retain the word "Dissociative" for ICD-11, rather than approve the nosology suggested by Stone and Shakir, and ICD-11 has gone forward with the term:

"Dissociative neurological symptom disorder"

- not "Conversion Disorder (Functional Neurological Symptom Disorder)" as DSM-5 has used or "Functional neurological disorder" as some clinicians and service providers are using.

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1069443471


The WHO wishes to anchor DNSD firmly in the Mental, behavioural and neurodevelopmental disorders chapter, under its ICD-10 legacy parent class: Dissociative disorders.

But WHO did eventually concede to a placatory secondary parenting of DNSD under the Diseases of the nervous system chapter, as this was lobbied very hard for by Stone and Shakir (the latter, former chair of TAG Neurology). Initially, ICD Revision had very robustly rejected their submission for secondary parenting DNSD under Neurology.

And as I've mentioned in my earlier post, the WHO, in any case, prefers to avoid the use of the term "functional" in ICD and ICD derivative publications because the term is used in diverse ways within ICD and its family of associated classifications.

Edited to correct typos in acronyms to "DNSD".

 

Thanks for that and for all your work on this--it's pretty amazing. So a "secondary parenting" means placing an illness under another rubric as well as its primary one--ie under neurology as well as mental disorders chapter? So the idea is WHO rejected the use of "functional" because they thought it blurred the lines too much when this was still really the same old dissociative or conversion disorder? What are the implications of having it co-listed under neurology? And under neurology, it retains the dissociative name rather than "functional"?

 

https://www.youtube.com/watch?v=f8iNYY7YV04

She says she has fibromyalgia, that it can be treated by a mental health professional, that she was raped when she was younger and that this trauma caused fibromyalgia.

But she also says that we don't know what fibromyalgia is and that we need to figure it out. A bit contradictory.

 

Yes, in terms of an explanation, it was all over the place. She seems to be saying there's a 'neuropsych' element and an 'immune' element, but she strongly connects it to past trauma and PTSD.

 

I also noticed that the audience applauded in response to what it perceived as empowering, positive and courageous statements.

I thought that is an illustration of the popularity for certain ideas that can make people overlook problems with research and lead to response bias on questionnaires. At least some people in audience apparently already strongly feel that a mental health approach to fibromyalgia is the right answer and is sure to lead to good results.

I recognize that this is a very human tendency and not a characteristic of only people that believe in psychological explanations for disease, although it seems to be stronger in this area for some reason.

Desperation is also a big factor. Nobody likes to hear that an illness is not understood and treatable. We patients don't like to hear certain things about our illness either. People would rather hear that a psychologist or some specialist doctor can make it right, if only you're willing to undergo the cleansing ritual of psychotherapy, or alternatively a long course of antibiotics or stem cell therapy or whatever.

 

In this context is "dissociative" disorder being used euphemistically as a synonym for conversion disorder, or is there a substantive difference between the concepts? I should be able to work it out , but the eyes wander, as does the concentration.

 

Dissociation is usually linked to trauma. It's an 'escape from reality in the face of intense emotional pain' thing, allegedly.

 

The audience clap when they're told to clap. It's Oprah...

 

Thank you!

Yes. Multiple parenting wasn't permissible under previous editions of ICD.

For ICD-11, some disorders and diseases have been assigned a secondary and occasionally a tertiary parent. This function should not be referred to as "dual parenting", "co-parenting" or "dual classification" as there is always a "primary parent" (aka the "linearization parent") and it is the primary parent's chapter location that dictates what code is assigned to the category and it retains that code wherever it may be secondary listed.

Where a secondary parent has been assigned, the disorder or disease may be listed under two discrete parent classes within the same chapter or straddle more than one chapter. This enables, for example, diseases like skin cancers to be listed and searchable under both the chapter for Diseases of the skin and the chapter for Neoplasms.

A good example of tertiary parenting is Behçet disease, which is listed under two parent classes within the Diseases of the immune system chapter and is also listed under Diseases of the skin.

In 2010, ICD Revision published a discussion paper proposing the concept of a potential new chapter for ICD-11 specifically for multi-system diseases like Behçet disease, which straddle more than one organ system or more than one aetiology chapter. The concept of creating a Multi-system chapter for certain diseases was later rejected in preference to specifying secondary and tertiary parents within the existing chapter structure.

The secondary parenting of Dissociative neurological symptom disorder and its subclasses under the Neurology chapter was implemented in May 2018.

Yes. Dissociative neurological symptom disorder's primary parent chapter is Chapter 06 Mental, behavioural or neurodevelopmental disorders. Its primary parent location is under the Dissociative disorders category block, so it takes its code from that parent class and is coded: 6B60 Dissociative neurological symptom disorder.

Under 6B60 Dissociative neurological symptom disorder sit 15 discretely coded for subclasses (codes 6B60.0 to 6B60.85) for greater specificity, for example: 6B60.4 Dissociative neurological symptom disorder, with non-epileptic seizures and 6B60.6 Dissociative neurological symptom disorder, with paresis or weakness.

So within ICD-11 there are 15 discrete DNSD codes that can be selected for, and all are prefaced by "Dissociative".

Where the terms are listed under the Neurology chapter, they retain the same category names, so no, they don't drop "Dissociative" under their Neurology chapter listing.

However, the terms

• Functional neurological disorders
• Functional neurological symptom disorder
• Conversion disorder

are listed under Synonyms under the 6B60 Dissociative neurological symptom disorder category and are indexed to the 6B60.Z "Residual" code. But the ICD-11 "Concept Title" or "Preferred Term" is "Dissociative neurological symptom disorder".

The WHO rejected "functional" for a number of reasons:

a) The APA's DSM-5 code sets are copyright and APA publishing derives a substantial income stream from licensing the use of its code sets for research criteria and from sales of its DSM-5 and derivative publications for clinical and reimbursement use. Its criteria set for "Conversion disorder (Functional neurological symptom disorder)" are a rigid set of criteria which can be used in clinical and research settings. Whereas ICD-11 does not use rigid criteria sets, but more flexible disorder descriptions, required features etc.

If the WHO had wanted to call its ICD-11 category "Functional neurological symptom disorder" (ie give it the same disorder name as the DSM-5 disorder) that would have presented licensing issues with APA publishing. Similarly, if the external working group that developed "Bodily distress disorder" had wanted to call their similar construct "Somatic symptom disorder" there would have been intellectual property and licensing issues; and having a DMS-5 version of SSD and slightly different or a significantly different ICD-11 variation on SSD could present problems clinically and for research.

b) TAG Mental Health has said: "The Mental Health TAG preferred to avoid the term ‘functional’ in the entity title as within mental health this term is often seen as dated and sometimes as pejorative. Instead, the term ‘dissociative’ was retained in order to anchor them clearly in the dissociative disorders grouping. There is no rationale or evidence presented in this proposal [from Stone et al] based on which to override this decision. MSAC recognizes that the symptoms presented as a part of this disorder are by definition not due to a disease of the nervous system, but they mimic neurological symptoms and patients with these presentations are commonly referred to neurologists for evaluation."

The word "functional" is also used in ICD in relation to general medical conditions where it has a number of meanings. The WHO publication International Classification of Functioning, Disability and Health (ICF) (the WHO framework for measuring health and disability at both individual and population levels) also uses the term "functional" in the context of "functional impairment" "functioning" and disability.


What WHO and TAG Mental Health do not do is set out 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 its conceptualisation of the term has evolved over the years.

Do bear in mind that the brief disorder descriptions you see in the Blue and Orange browsers for these 15 DNSD categories are not the full disorder descriptions and guidelines. For these we need to wait for the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders to be finalized and published.

The CDDG provides the expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use. (I have a non public domain draft of how the CDDG stood in 2016 for these terms, though the codes and category names and possibly some of the draft texts will have been revised since 2016.)

The change of disorder name from Dissociative disorder of movement, sensation, or cognition to Dissociative neurological symptom disorder was implemented in October 2017. There is currently a proposal submitted by an external stakeholder to revert back to Dissociative disorders of movement, sensation or cognition. This proposal is currently with the CSAC for a decision.

In my opinion, the secondary parenting of the DNSD disorder term and its 15 subclasses under Neurology will not impact significantly. There might potentially be some advantage to patients and clinicians in the areas of commissioning of services, access to specialities, and reimbursement. But the primary parent code and primary linearization parent remain firmly tethered to the Mental disorder chapter.

In the ICD-11 browser the secondary parent is displayed thus:

Dissociative neurological symptom disorder

Parent(s)

• Dissociative disorders
• 5-54 Other mental and behavioural disorders
• Diseases of the nervous system [the embedded link points to the beginning of the Neurology chapter not to the disorder term as listed under the Neurology chapter]

​

But click on the category's link as listed in the Neurology chapter's hierarchical listings on the left of the screen and users are redirected back to the listing in its primary parent location in the Mental disorders chapter. (Although the 15 subclasses don't jump link back to their primary location in the Mental disorders chapter with the Foundation Component tab selected, they do redirect in the MMS Linearization view - which is the ICD-11 equivalent to the Tabular List).

(These DNSD subclass categories are "grayed out" in the Neurology chapter's MMS Linearization, which indicates that these terms are primary parented elsewhere in the classification.)

In the Coding Tool/Index, with the Chapter distribution/filter button selected, only the Mental and behavioural chapter is listed. As with the ICD-10 Index, the Coding Tool is presented as the first point of access for coders.

In practice, I suspect clinicians and coders will be largely oblivious to DNSD's secondary parenting under Neurology, and as I say, this was a grudging concession by TAG Mental Health after several years of "tug-of-war" across the two chapters between TAG Mental Health and the clinical professional neurology lobby group (one of whom was chair of TAG Neurology and a past President of the World Federation of Neurology).

In my opinion it is tokenism on the part of WHO and is perceived as such by at least one leading FND patient group.