BMJ Neurology Topic Collection: "Advances in Functional Neurological Disorder", 2023

Fibromyalgia, irritable bowel, chronic fatigue syndrome are not in DSMV, have never been in any DSM. The ICD have publicly stated they have no plans to place ME (CFS) in the Mental and Behavioral section of the ICD.

That proposal is a blatant disease-grabbing exercise.

 

Indeed.

I just wrote about this recently, I was expecting this might happen. Psychiatry has been trying to pull ME/CFS into their (section of) classification for 35 years to justify their involvement in it, and the old trick to equate CFS with ICD-10 neurasthenia and then imply (or even outright claim) that CFS was therefore classified psychiatrically too (despite neurasthenia specifically excluding ME), can no longer be applied. Neurasthenia has been removed from the ICD in ICD-11, and chronic fatigue syndrome has been firmly put into the Tabular List alongside myalgic encephalomyelitis, as inclusion term of 8E49, postviral fatigue syndrome, classified under diseases of the nervous system.

So I was wondering if and when the CBT industry would try the route of functional neurological disorder to get to ME/CFS via its classification as disease of the nervous system.

Of course they want the recently-implemented (2022) ICD-11 to be "updated" (I expect there to be a lobby campaign for that going on in the background, and foreground of course with this "topic collection" PR move), because as it is, "functional neurological disorders" is an index synonym for the Tabular listed 'unspecified' residual category '6B60.Z Dissociative neurological symptom disorder, with unspecified symptoms', a Dissociation disorder classified in section 6 Mental, behavioural, or neurodevelopmental disorder. And "functional neurological symptom disorder" occurs as an index synonym for subsections of '6B60 Dissociative neurological symptom disorder'.

6B60 Dissociative neurological symptom disorder is clear that its symptoms "are not consistent with a recognised disease of the nervous system" (which includes ME/CFS, listed as such); its parent 'Dissociative disorders' also states that "The symptoms are ... not due to a Disease of the Nervous System, ... head trauma, or another medical condition.", again excluding ME/CFS.

Of course the CBT pushers don't like that. So they try the old lump&claim technique to fix that problem for them. (ME/CFS as conversion disorder FFS)

Btw., dysautonomia: also not FND

 

That's a rather decorative and misleading way of saying "We have been actively trying to revive hysteria under this obfuscating term for the past two decades."

"We picked up the pace, and after ample promotion people are picking up our propaganda"

That's just 19th century (pre-medical advancement) theory, and deeply misogynist hypochondria and hysteria, warmed up.
They try to make it sound all fancy and professional, but it's just a word game.




Edited to add:

The essence.
It's a turf war, and they want to claim these things for themselves.

 

Next they'll publish other editions nobody wants:

Advances in Homeopathy

Advances in Phrenology

Advances in Energy Medicine

 

I'm not particularly concerned for the potential for making changes to ICD.

Although ICD-11 was adopted by the WHA for implementation from 2022, the majority of WHO member states are still using ICD-10 (or a country specific modification of ICD-10). It will be many years before the majority of member states have adopted and transitioned to ICD-11. In the meantime, ICD-10 (or a modification of ICD-10) remains the mandated edition for most member states.

With regard to the potential for making changes to ICD-10 - that ain't gonna happen.

There is no "FND" per se in ICD-10, which retains the F44 Dissociative [conversion] disorders block. But ICD-10 cannot be changed.

The annual Update and Revision Committee mechanism reached the end of its life in 2019, when the final update of ICD-10 was released. The only updating of ICD-10 that can be considered in the future is correction of errors and typos and addition of globally important viruses like SARS.

As Arvo has set out, WHO/ICD-11 Development rejected the term "Functional neurological disorder" in preference for the term: Dissociative neurological symptom disorder retained under a "Dissociative disorders" parent block.

It does include the terms: "Functional neurological disorders" (coded to the Residual code: 6B60.Z) and "Conversion disorder" under Synonyms to the Title term/preferred term which is: 6B60 Dissociative neurological symptom disorder.

As we've discussed in the past, Jon Stone and Raad Shakir had lobbied hard for a "Functional neurological disorders" or similarly termed block to be relocated and primary parented under the Neurology chapter. Again, this proposal was rejected by WHO/ICD-11 Development.

But a concession was made to secondary parent 6B60 Dissociative neurological symptom disorder under the Neurology chapter - so 6B60 has two parents:

Dissociative disorders (its Primary parent)
Diseases of the nervous system (its Secondary parent).

It is the Primary parent that dictates which chapter a disease is classified under and determines the first two characters of its code - it isn't assigned two codes.


If you look for "6B60 Dissociative neurological symptom disorder" in the Diseases of the nervous system chapter, it displays as what is known in ICD-11 terminology as "a grey child" ie the text is a grey, clickable link which redirects the user back to 6B60's Primary parent listing in chapter 06 Mental, behavioural or neurodevelopmental disorders.

WHO's Dr Geoffrey Reed, who was project lead for the revision of the Mental, behavioural or neurodevelopmental disorders chapter and is still very much involved with ICD-11, is fiercely protective of this term and that:

a) the terminology should retain its historical association with the Dissociative disorders block;
b) the term should not be relocated entirely under the neurology chapter nor primary parented under neurology.


Continued in Part Two

 

Part Two:

What about proposing changes to ICD-11?

The ICD-11 Reference Guide sets out what classes of change can be made and according to what time schedule.

A proposal to move an existing coded-for term from one parent to another or from one chapter to another would be considered a "Major Change" because it would require a code change; these types of consideration for change are on the longest time schedule in order to maintain the stability of the classification for global application.

ICD-11 Reference Guide:

Extract:

3.12 Annex A: ICD-11 Updating and Maintenance

"...The ICD-11 is being released in five-yearly ‘stable’ versions for international use (contains updates that impact on the four- and five- character structure), unless urgent public health needs require otherwise."

"Updates at a more detailed level than four- and five- characters can be published annually. Small error corrections that serve to clarify meaning, indexing or errors, may be communicated annually. Additions to the index can be done on an ongoing basis."

"All proposals are entered on an online maintenance platform, for verification of completeness, discussion and editing. The platform provides the infrastructure for routing proposals to reviewers and experts, and for providing feedback to the original authors. The maintenance platform also shows the final outcome of the proposal that has been entered in the authoring platform and become part of the ICD. Any individual user of the classification can submit a proposal for an update to the ICD. Such updates can refer to one or more entities of the ICD. They may address the position of entities in a tabular list, in the Foundation Component, and any element of the content model. The maintenance platform of ICD-11 (known as the ‘orange browser’) is used for proposals and comments. Any input to ICD-11 and its components requires proper referencing of sources, details of scientific evidence, and permission from the owner of any copyright materials (where applicable)."

"The proposals will be reviewed by scientific experts and classification experts*. The decision regarding the outcome of a particular proposal will be based on the recommendations by these experts."​

*The WHO CSAC and MSAC committees which serve as ICD-11's update and revision committees.


In 2020, ICD-11 Development considered a proposal to relocate an existing block of terms (a parent class and all its child categories) under a different parent block and assign a secondary parent class.

WHO/ICD-11's response was:

"The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted. Changing the primary parent of this entity would result in this entity needing to have the code changed, as entities are assigned based on their primary location."​

Team 2 WHO 2020-Feb-07 - 15:57 UTC
​

Potentially relocating PVFS; ME; CFS, IBS, Fibromyalgia or any other existing ICD-11 term from their current primary parent classes and reclassifying them under 6B60 Dissociative neurological symptom disorder (or under any other term) cannot be undertaken lightly by WHO/ICD-11, as such changes would constitute "Major Changes" which would result in disruption to the stability of the code structure, and can only be considered according to the revision schedule.

In June 2015, while ICD-11 was still under development, I had a conference call with Anneke Schmider (then WHO Technical Officer, ICD Revision Project Manager) and Dr Robert Jakob (WHO ICD classifications, ICD Revision Steering Group) in which Dr Jakob said he could be "crystal clear" that there is no proposal to classify the ICD-10 G93.3 legacy terms under the Mental and behavioural disorders chapter.


Around 2016, Per Fink had lobbied WHO to include a special disorder section or create a new chapter within ICD-11 under which his BDS "functional disorders" (ME, CFS, IBS, Fibro and others) could be classified. WHO rejected his proposal:

​

In November 2017, Dr Tarun Dua and the (by that point stood down) Neurology Work Group proposed that "CFS" should be deleted from the neurology chapter and relocated under the Symptoms, signs chapter under parent: Symptoms, signs or clinical findings of the musculoskeletal system. That proposal was rejected by WHO/ICD-11 in November 2018.

In their rationale for their decision to reject, WHO stated that following completion of a literature review, they had concluded that Postviral fatigue syndrome should remain the indexing target, that there was currently no evidence to suggest a better place to relocate these terms and that the terms would remain classified within the Diseases of the nervous system chapter.

As I say, I'm not unduly concerned about them obtaining changes to ICD.

Edit: Minor edits for better clarity.

 

Arvo makes a good point:

ICD-11 does not usually include diagnostic criteria, as such, but where it does, these were supposed to be internationally recognised consensus criteria. It does contain "Description" texts for some terms, including for the Dissociative disorders. There were meant to be Description fields completed for all terms in ICD-1, not just those in the Mental, behavioural or neurodevelopmental disorders chapter.(Originally this text field was going to be called "Definition" but was subsequently changed to "Description".)

These fields were supposed to have been populated before ICD-11 was finalised and external teams were drafted in to try and catch up on this task but many are still blank, including a Description field for 8E49 Postviral fatigue syndrome.

There is some descriptive text and criteria for ICD-11 Fibromyalgia (though this may not be up to date). There is a very brief Description text for Irritable bowel syndrome. Also a brief description for Postconcussional syndrome.

Early in the development process, some suggested text had been generated for the 8E49 Description field, probably auto-scraped from the CDC or other US site, but that text was later dropped between the Alpha and Beta development stages and not revised - so there is currently no Descriptive text for any of the three ICD-11 8E49 terms.

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

Edited to add: For the record, this ICD-11 Alpha draft "Change History" note dates from May 2010. At that point, all codes were provisional pending finalisation of the chapter structures. The proposal at that point was to make CFS the Title (or lead) term, rather than PVFS. When the terms were restored to the Beta draft in March 2017, after an unexplained absence of four years, PVFS had been restored as Title term, with both ME and CFS under Synonym terms.

You can see the proposed text at the bottom of the note. At that point "Definition" was still being used for these text fields rather than "Description". That suggested draft text was later removed:

 

What is the purpose of a second parent, especially in this case?

 

"It is thought to be caused by excessive pre-conscious attention to the body; abnormal predictive coding; abnormal agency/ awareness of the self; inaccurate interoception and abnormal sensory processing."

Only by one complete idiot who hasn't noticed that his theory is backwards!

 

In ICD-10, it wasn't permitted to assign more than one chapter or parent to a category but ICD-11 permits multiple parenting.

The concept of multiple parents was introduced to make it easier for users to locate categories because some diseases straddle more than one chapter.

For example, skin cancers straddle both chapter 14 Diseases of the skin and chapter 02 Neoplasms.

Pneumonia, for example, has been assigned two parents (Lung infections in chapter 12 Diseases of the respiratory system and chapter 01 Certain infectious or parasitic diseases.)

Some diseases are now assigned more than one parent class within the same chapter, for example, Behçet disease has been assigned three parents, under chapter: 04 Diseases of the immune system:

• Pustular vasculitic reactions
• Variable vessel vasculitis
• Autoinflammatory disorders

In the ICD-11 Foundation view (which contains all of the classification's terms and index terms - known as "entities"), a disease will be listed under its primary parent chapter location. But in the ICD-11 for Mortality and Morbidity Statistics Linearization (which contains the coded-for terms), if the disease has more than one parent, the term appears as a "grey child" in the secondary parent location, which when clicked on redirects the user back to the primary location.


The purpose of the secondary parenting of 6B60 Dissociative neurological symptom disorder under the Neurology chapter was a sop to Stone and Shakir. (Shakir had served as chair to the Topic Advisory Group for Neurology.)

If you want to read why Stone and Shakir considered that "FND" should be relocated under the neurology chapter there is a paper they published that I could dig out for you.


Edited for clarity and to add paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4277679/

Stone J, Hallett M, Carson A, Bergen D, Shakir R. Functional disorders in the Neurology section of ICD-11: A landmark opportunity. Neurology. 2014 Dec 9;83(24):2299-301. doi: 10.1212/WNL.0000000000001063. PMID: 25488992; PMCID: PMC4277679.

PDF of full paper attached.

 

Depending on how science pans out, it may be possible in the future to request consideration of secondary or tertiary parenting for the 8E49 categories, so these terms could also be listed under more than one chapter.


In March 2017, Chapman & Dimmock wrote in their ICD-11 proposal submission for the terms: Myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome:

Extract:

"3.1 Classification of multisystem diseases within ICD-11: Previous editions of ICD have organized diseases into chapters based on aetiology or affected organ or body system. The architecture of ICD-10 does not facilitate scientific and taxonomical representation of diseases with varied manifestations that belong to or affect multiple body systems, for example, systemic lupus erythematosus (SLE) and Behçet disease, or where no single organ system predominates to guide chapter placement.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating within ICD-11 a new chapter for Multisystem diseases [1]. This proposal was subsequently rejected in preference to the consideration of generating a separate linearization from the Foundation, as a "virtual" multisystem chapter [2].

It is currently unclear whether ICD Revision intends to implement a multisystem linearization or whether diseases that would have been candidates for assigning to a "virtual" multisystem chapter will be represented solely through multiple parentage and the explicit listing in the content model of all body systems involved for that entity.

Regardless of how multisystem diseases will be handled in general in ICD-11, it is premature to suggest multiple chapter parentage [for the terms: Myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome] at this time.

References:

1 Aymé, Chalmers, Chute, Jakob (2010). ICD Revision: Discussion paper: Multisystem Disorders. http://bit.ly/2nnilKW

2 WHO ICD Revision Information Note 19: Multisystem Diseases Chapter in ICD, January 29, 2013.​

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

ICD-11 went forward with the concept of multiple parenting rather than creating a new chapter for multisystem diseases or building a linearization for multisystem diseases.

 

And the kicker is that this interest is... them. It's literally their own doing, they're pointing at the surge of work they've done lately as evidence that there's a surge of interest. This is like a financial pump & dump scheme where someone buys a lot of some stock to inflate the price, pretending that it's an organic surge of interest. It's exactly as fraudulent, except not actually against the law.

Again and again all they do is describe what they do, as if it justifies it all. Even the "effectiveness" is entirely on their say so. When they are stuck with the lack of evidence, when talking to skeptical medical professionals pointing it out, they always resort to "come spend a day with us and we'll show you what we do". It's always "trust us, we're experts", while pretending to be doing evidence-based medicine.

Even when they speak of an increased interest, it's their own damn fanatical pursuit. This would all be so dumb if it didn't have so much real power over people's lives.

 

The SNOMED-CT terminology system does not have disorder terms arranged under organ or body system chapters. It relies on associations of the term with multiple parents.

 

Thanks, I’ll have a read-through.

 

Thank you for you additional information @dxrevisionwatch, very interesting. (And thank you for the link of that paper, very useful.)

I've been collecting and writing some on the (dis)"functional" family (functional, functional somatic symptoms, functional neurological disorder), historical stuff with some more recent pieces on FND, but it ties in closely with the present.

Yes. That sentence also reminded me of a sentence from the discussion article where Chalder and Wessely's first proposed to stuff ME into a cognitive behavioural model and the "treat" that with CBT.

It says: "This model has been successfully applied to chronic pain." And the reference for that is a long piece by another dude who did the same as they did: propose to take chronic pain and stuff it into a CBM. That was the "succesful application".

 

Just as there will be an infinitesimal population that hasn’t been exposed to Covid, there will soon be an equivalent population without FND designations