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Embracing Change - ME and the International Classification of Diseases

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The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised. N.A.Wright provides a timely summary of this international classification system, considers some of the issues surrounding the existing and proposed listing, and calls on our advocacy organisations to get involved...

The World Health Organization (WHO) is responsible for producing an International Classification of Diseases – the ICD.

An important document in standardising epidemiological data, the ICD has often been a source of confusion in discussions about ME/CFS.

The ICD is subject to continuous review with updates published annually and major revisions are intended to be produced every ten years. The date for publication of the ongoing full revision has recently been announced as 2017, providing a three year extension to the formal revision process that began in 2007.

Understanding what the ICD is, what its limitations are and how best to engage with the revision process should be a significant focus for ME/CFS advocacy.

The ICD through an ME/CFS Lens

Many ME/CFS patients first gained awareness of the World Health Organization International Classification of Diseases in the various online discussions that surrounded the UK PACE trial and the arguments made against PACE and its associated projects.

As part of the challenge to the PACE research a patient advocacy position was advanced which relied on the classification of ME as a neurological condition under the World Health Organization’s “International Classification of Diseases” (ICD).

This advocacy position can be summed up as, “ME is neurological because the World Health Organization says so”. Unfortunately, it is a position that is poorly founded because the ICD simply does not confer the authority that is implied.

Equally unfortunate is that the WHO itself perhaps overstates its own case by claiming on its website that, “The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes.”

The ICD has very limited clinical application or diagnostic power, and with the exception of Mental Health (see 'Limitations of the ICD' below), has no significant diagnostic role in the health delivery systems of most developed countries.

A far more accurate statement of what the ICD is and what it can be used for, is to be found on the NHS Connecting for Health website:

“ICD-10 is a statistical tool that requires adherence to and application of specified definitions and rules to enable accurate, consistent and comprehensive capture of data for secondary purposes which is undertaken by health informatics professionals – clinical coders.”

A Brief History of International Disease Classification

International disease classification began a century before the United Nations (UN) and WHO came into existence. Building on the work of the British Registrar General from 1837, the first international listings of causes of mortality were accepted by the International Statistical Congress in 1855 and it is from this that the ICD revision numbers commence, the current publication is ICD-10.

By 1900 mortality statistics were augmented with a classification of morbidity by disease and further revisions saw, with the inception of the UN, the adoption by WHO of ICD-6, in 1946. Subsequent revisions were envisaged to take place every 10 years, although slippage at various stages leaves the current published revision at ICD-10 .

ICD-10 is currently under revision and will be replaced by ICD-11, which is scheduled for World Health Assembly approval in May 2017.

The term Benign Myalgic Encephalomyelitis was first included in ICD-8 which was published in 1969 where it was categorised under the heading “Disorders of the Nervous System” with the coding number G93.3. This classification was repeated in ICD-9 (published in 1975) and in ICD-10 (published in 1992).

The replacement for ICD-10 is long overdue and it must be expected that after more than 20 years, as part of the general updating process, some reconsideration of the classification of ME may take place.

Limitations of the ICD

Although vastly more sophisticated than envisaged by the pioneers of international disease statistics, the ICD is still primarily only a system of categorisation which to date has not been a reference of internationally agreed diagnostic criteria.

This may to some extent change with ICD-11 where the inclusion of diagnostic criteria may appear as part of the disease descriptors. There is one part of the ICD which has long standing acceptance as having diagnostic authority, that is Chapter 5: Mental and Behavioural Disorders, which is published in two separate editions, the Blue Book: Clinical Descriptions and Diagnostic Guidelines and the Green Book: Diagnostic Criteria for Research.

The ICD can be compared to the Dewy Decimal System (DDS) which is used throughout the world to give structure to libraries. Just because a book is allocated a given DDS number does not mean that the book lacks characteristics which may see it placed in another category, or that at some future date the category to which that particular book may have been assigned, may have its description changed or be further subdivided.

The book will not change but its system number and place on the shelf might.

The direct comparison between the ICD and the DDS is limited because diseases are not single edition books; research and developments in treatment mean that ‘diseases’ are subject to constant updates and even to full re-writes as well as the production of multiple volumes which may cross categories.

So, unlike a library, not only are the categories within the ICD subject to change, but so also is the material that is contained within the categories. This is why in addition to annual internal updating via the WHO-FIC Committees, there is a notional ten year process of open review; it is understood that for the ICD to remain relevant it must be constantly globally updated.

The fact that ICD-11 is already 12 years late is no doubt evidence of the huge task that this updating represents in the face of unprecedented world wide investment in health research.

In summary, what this means for ME/CFS advocacy is that categorisation within the system has not conferred diagnostic authority and the location of a disease in a particular category only defined what was seen as useful from the perspective of gathering data, at a particular time.

ICD categorisation will always be subject to change, using the ICD as though it were a fixed and authoritatively determined diagnostic statement, rather than a serviceable means of data recording, may not be advisable from an advocacy perspective.

ICD Clinical Modifications

International Classification of Diseases-Clinical Modifications (ICD-CM), are nationally specific adaptations of the ICD categorisation system which may include diagnostic and clinical detail, such that an ICD-CM can be used as a diagnostic and clinical reference within a specific nation’s health provision. ICD-CMs should not be confused with the ICD.

At least 12 countries including the US, Canada, Australia and Germany, employ ICD Clinical Modifications, which serve a variety of purposes in different countries. The US, for example, has a sophisticated process overseen by the Centers for Medicare and Medicaid Services.

Clinical Modifications, although based strictly upon the ICD categorisation, unlike the ICD itself, do have direct clinical relevance for health provision in each relevant country. Though it is important to be clear that updates to the ICD, may not feed directly into the national ICD-CMs.

Each national ICD-CM is subject to national review which may substantially lag behind changes to the ICD. The US in particular trails behind much of the rest of the world by still using a Clinical Modification based on ICD-9, a version long since retired by WHO. ICD-9-CM does have an annual process for updates, but the US doesn’t plan to shift from ICD-9-CM to ICD-10-CM until late 2014.

International Classification of Diseases 11th Revision

The International Classification of Diseases (ICD) 11th Revision is a currently active process, and it is this process that will produce the documents which will be collectively known, once approved by the World Health Assembly, as ICD-11.

According to the WHO:

“ICD-11, is now being prepared. The development phase will continue for three years and ICD-11 will be finalized in 2017. For the first time, through advances in information technology, public health users, stakeholders and others interested can provide input to the beta version of ICD-11 using an online revision process. Peer-reviewed comments and input will be added through the revision period. When finalized, ICD-11 will be ready to use with electronic health records and information systems. WHO encourages broad participation in the 11th revision so that the final classification meets the needs of health information users and is more comprehensive.”

Participation is additionally invited and public health users, clinicians, researchers and other stakeholders can register to provide input into the drafting process and to assist in support activities, such as participation in field tests and translations.

Access and the registration portal is here: ICD-11 Beta Draft (or click the image above).

While open to individuals, achieving effective influence will almost certainly need the force of established organisations supported by acknowledged medical expertise. Co-ordinated action by a coalition of such organisations would be the ideal.

ME/CFS and ICD-11

Because they affect diagnosis and treatment provision directly, the various national ICD Clinical Modifications have the most immediate impact upon patients. Nevertheless the positioning of ME/CFS within the ICD system as a whole is important because such an international reference can influence the context in which the illness is considered in terms of research and health service resource allocations, across the globe.

Changes to the structure and chapter organisation between ICD-10 and ICD-11 will mean that many ICD terms will be presented differently. A new code numbering system applies across the entire classification, so the current coding position of G93.3 for Benign Myalgic Encephalomyelitis, is likely to change, though categories with ICD-10 equivalent terms will be cross referenced to the current ICD-10 codes. Some parent class terms are being retired and there are also proposals for changes to category hierarchies.

In early 2013 the proposal displaying in the Beta drafting platform was to make CFS the ICD Title code, with Benign Myalgic Encephalomyelitis specified as the Inclusion Term to CFS; and PVFS listed under Synonyms to CFS. There will be significantly more textual content across all chapters of ICD-11 and all ICD Title codes will be allocated Definitions and selected other "Content Model" descriptors.

Patient advocacy groups need to monitor these developments and to seek to influence, not just the working proposals on chapter location and hierarchy, but to also ensure that proposals for definitions and other textual content reflect the long term interests of patients.

Dx Revision Watch makes the following interesting observation:

“Unlike ICD-10, multiple parents are allowable under ICD-11: TAG Neurology may intend to assign one or more of these terms to multiple parents within the same chapter, or to code to parents located under more than one chapter, for example, under parent classes, Symptoms, signs and clinical findings involving the nervous and musculoskeletal system or Functional disorders of the nervous system (located under both Chapter 07 and Chapter 19), ...”

It would certainly be a pragmatic approach to have ME/CFS under multiple listings. While epidemiological data collection would be somewhat complicated, multiple listings would allow the accommodation of future nomenclature changes relative to developments in research and treatment.

Future Work

Through her website, Dx Revision Watch, Suzy Chapman has been monitoring and reporting on the progress of the revision to PVFS (Post Viral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) for ICD-11 for the last five years. Suzy has also monitored and reported on the revision of the ICD-10 and DSM (Diagnostic and Statistical Manual of Mental Disorders) Somatoform disorders.

However, Suzy has recently announced that for personal and political reasons she is stepping back from the work she does via her site. She does not anticipate publishing and circulating new content, although there will be some updates to existing reports.

The WHO is an international body: our reliance on a single volunteer in a single country to monitor and report on the ICD process for the global ME/CFS patient and professional population, has been neither fair, nor reasonable.

Suzy Chapman's stepping back should be seen as a wake-up call to patient and advocacy organisations to get involved.

ICD-11 need not be seen as inherently a threat to the interests of ME/CFS patients; however to make the most of the opportunities that the ICD-11 process offers, patient organisations must become active participants in the development of the ICD-11 draft over the next three years.

The first objective of that participation should be to ensure that the lack of transparency that currently affects the ICD-11 position on ME/CFS, (and to which patients have been alerted by Dx Revision Watch, see: A Beta draft black hole), is urgently resolved.

*note ME/CFS is used in this article as a generic term, it doesn’t imply any diagnostic preference.

**The author thanks Suzy Chapman for helpful comments and suggestions in relation to the ICD-11 revision process. All views expressed are the author’s own.

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Well, this is interesting.

Yesterday I had some exchanges with Annette Brooke MP, Chair of the APPG on ME, who is also my MP.

Annette was unable to clarify the source for the public statement on which Jane Ellison MP, Parliamentary Under-Secretary of State for Health, had relied for her Oral Question response.

I have emailed Ms Ellison and requested clarification for her source.

I have also submitted a request via the Department of Health office that deals with requests for information relating to Ministers and government departments, for the source of WHO's "statement". This is a formal process and replies are provided within 18 working days by a civil servant on behalf of the Minister concerned. Since I am not a constituent of Ms Ellison's ward, she is not obliged to provide me with a response.

This evening, the three posts on WHO's Twitter site, which were posted on February 12th, in reply to a member of the public, are no longer displaying and would appear to have been expunged.

Possibly WHO has now decided to issue a formal statement of clarification.

Hi Suzy,
Annette is also my M.P. so I guess we must live in a similar area I wondered if you had any experience with the renown Purbeck M.E. Clinic held at Wareham Hospital or the very sympathetic rheumatologist Dr Richards who is the specialist for that clinic?
I also have a question for anyone who reads this entry and could give advice about their own experience with flu shots and reticent G.P.s. I have for the last 18 years suffered every November through to May with an extreme respiratory problem which starts with flu like symptoms but end up with extreme sinusitis. I had escaped this condition on three maybe four occasions always when a new G.P. or Locum gave me the flu shot, but more and more I am constantly told “your not on the list” this despite the N.H.S. Choices web pages saying your G.P. has discretion and can give you the shot, Has anyone else experienced this reticence when winter comes? What makes it worse is staff are always saying to me “I don’t know why they keep refusing you, we have it allocated to all pensioners, many who don’t bother so the doses just sit on the shelf till the date runs out and then they get put in the bin!” hope this gives you all food for thought.
Bye For Now
@countryrockstar, if you can't persuade your GP to give you a free NHS flu shot, then anyone can pay to get flu shots privately either through your GP or at some pharmacies e.g. some Tesco pharmacies, for about £10/£15 I think.
Two recent posts on Dx Revision Watch

On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft:

Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform:

Letter to key ICD Revision personnel

June 10, 2015



Update to Letter to key Revision personnel re Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform

June 22, 2015


On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft.

On Friday, June 19, Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager) facilitated a conference call with myself and Dr Robert Jakob (WHO ICD classifications, ICD Revision Steering Group) in which Dr Jakob responded to my letter, having obtained a progress report from TAG Neurology.

"Dr Jakob says he can be “crystal clear” that there is no proposal to classify the ICD-10 G93.3 legacy terms under the Mental and behavioural disorders chapter."

For a summary of the main points from our discussions re the current status of proposals for the G93.3 ICD-10 legacy terms, see:

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On May 2, 2015, I submitted a referenced commentary via the ICD-11 Beta platform Comment facility for the consideration of the Topic Advisory Group for Mental Health (TAG Mental Health) and the sub-working group, ICD-11 Working Group on Somatic Distress and Dissociative Disorders (the S3DWG), which has specific responsibility for making recommendations to TAG MH on the revision of ICD-10's Somatoform disorder categories.

As one needs to be registered with the Beta draft in order to read/make comments and submit proposals, I have published a copy on my site:

Comment submitted in May 2015 to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder

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In May, WHO quietly released a report by the external assessment contract holders on the status of the ICD revision process, its management and resources, the feasibility of meeting its goals and timelines, and its fitness for purpose.

Among other measures, a further shift in the target date for WHA adoption from May 2017 to May 2018 has been proposed. At the end of June, ICD Revision is expected to release a revised project plan.

The reviewers’ assessment and recommendations and WHO’s initial response to the report’s findings can be accessed here: http://wp.me/pKrrB-44N

"A revised workplan will be formulated before the end of June and submitted for approval to the RSG-SEG. During 2015 the WHO secretariat will be strengthened in terms of project management, communication of progress and plans, documentation and transparency of decision-making and classification expertise, as recommended by the reviewers."
Thank you, Simon and Denise.

When ICD Revision was first launched in April 2007, the target date for presentation of ICD-11 for approval by the World Health Assembly had been 2011/12. This considerably underestimated the workload. The Timeline was shifted to 2014/15, then to May 2017. Currently ICD Revision is projecting May 2018. But it would not surprise me if there are further extensions to the Timeline.

The Topic Advisory Group for Neurology that retains responsibility for these terms has been functioning for 6 years, now, since June 2009.

Dr Jakob told me that in September, ICD Revision plans to post various materials relating to the development process on the WHO/ICD website for public scrutiny, this to possibly include rationales. Possibly also documents relating to the revision of the abridged Primary Care version.

If TAG Neurology’s proposals for the G93.3 legacy terms are not ready for September release, then Dr Jakob projected their release towards the end of December.
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Do you think they might try to shuffle off mecfs here too?
2.1. Chronic primary pain
Chronic primary pain is pain in 1 or more anatomic regions that persists or recurs for longer than 3 months and is associated with significant emotional distress or significant functional disability (interference with activities of daily life and participation in social roles) and that cannot be better explained by another chronic pain condition. This is a new phenomenological definition, created because the etiology is unknown for many forms of chronic pain. Common conditions such as, eg, back pain that is neither identified as musculoskeletal or neuropathic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will be found in this section and biological findings contributing to the pain problem may or may not be present. The term “primary pain” was chosen in close liaison with the ICD-11 revision committee, who felt this was the most widely acceptable term, in particular, from a nonspecialist perspective.
Do you think they might try to shuffle off mecfs here too?
In an ideal (read 'honest') world, that wouldn't bother me. It is what it is.

But the baggage it would come with is disturbing.
In an ideal (read 'honest') world, that wouldn't bother me. It is what it is.

But the baggage it would come with is disturbing.
In reality, no-one apart from us take G93.3 seriously anyway. I suspect we'd miss being able to brandish it about though.
Simon, before I respond, a bit of an update to this proposed new Chronic pain section:

Note that the proposed parent class Primary chronic pain is now proposed to be amended to Chronic primary pain, to align with the terminology that had been suggested in the Treede et al (2015) paper.

If you are registered with the Beta draft, you will have access to the Proposals Mechanism. Via this, you can read the detailed proposals, rationales and literature references for most of these proposed new terms.

So far, there are detailed proposals entered into the Proposal Mechanism for the parent classes in bold, below:

>>Chronic pain
>>> Primary chronic pain (to be amended to Chronic primary pain)
>>>> Mono-site primary chronic pains syndromes
>>>> Multi-site primary chronic pains syndromes
>>>>> Fibromyalgia (currently Definition/other Content Model parameters as per previous chapter location)

>>Chronic cancer pain
>>Chronic postsurgical or posttraumatic pain
>>Chronic musculoskeletal pain
>>Chronic visceral pain
>>Chronic neuropathic pain
>>Chronic headache or chronic orofacial pain

In the Treede et al paper, it is proposed that nonspecific back pain ("back pain that is neither identified as musculoskeletal or neuropathic pain"), chronic pelvic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will sit under "Chronic primary pain" and that this category is "a new phenomenological definition, created
because the etiology is unknown for many forms of chronic pain."

So far, only Fibromyalgia has been relocated in the draft. (That change was made on May 5, 2015 but it could be revised.)

Some categories proposed for this section will be secondary parented to their disease chapters.

I have asked whether it is proposed to secondary parent Fibromyalgia to its original chapter, Diseases of the musculoskeletal system and connective tissue.

IBS is currently listing in the Beta draft under its original location. It's unclear whether the current intention is for the addition of a discrete category for irritable bowel syndrome under Chronic primary pain, or whether the intention is for irritable bowel syndrome to be accommodated under Chronic visceral pain.

Or whether the IASP proposal to locate IBS under this new Chronic primary pain category has already been rejected by ICD Revision or a decision over IBS has not yet been reached.

I've asked for clarification of the most recent proposals for the location of irritable bowel syndrome within the classification.

BTW, under the detailed description and criteria for Chronic pain is an optional specifier for Presence of psychosocial factors

C) Presence of psychosocial factors

Classify whether positive evidence of psychosocial factors is present:

Psychosocial factors which contribute to the onset, the maintenance or exacerbations of pain or are a consequence of pain can be cognitive (e.g. catastrophizing, fear avoidance beliefs, worry/rumination, hypervigilance), behavioral (e.g. avoidance or endurance behavior, dysfunctional operant processes), emotional (e.g. fear of pain, injuries or illness progression, specific and general health fears, hopelessness/demoralization) or social (e.g. job strain, socioeconomic hardship, lack of social support).

Code 1*: with psychosocial factors

Code 2: without psychosocial factors

Note*: Code 1 requires that evidence for the involvement of such factors is present

I have copies of all the detailed descriptions published, so far, but they are a bit lengthy to post, here. I'll maybe archive them on my site in the next week or so and post links, here.

I would advise everyone who is interested in the ICD-11 drafting process to register with the draft for increased access, as there is such a lot that I can that those who aren't registered don't have access to.


@ Simon Do you think they might try to shuffle off mecfs here too?

I doubt it.

Since ME and CFS are not essentially defined as pain disorders or as chronic pain disorders, I don't see that ICD Revision could rationalize relocating one or more of the G93.3 legacy terms under this proposed Symptoms, signs Chronic primary pain section by creating discrete entries for these terms.

As far as Fibromyalgia goes, there were already moves to redefine FM as chronic widespread pain.

When I spoke to Dr Robert Jacob, there were no indications as to whether or where TAG Neurology might be considering relocating the G93.3 legacy terms. But I got the drift that possibly secondary parenting one or more of the terms under another chapter might be under consideration.

I prefer not to speculate, but one possibility might be that they are considering leaving the terms where they are, under a new parent class or under an existing parent class (since "Disorders of brain" is retired for ICD-11), but secondary parenting one or more of the terms under the Symptoms, signs chapter, under a new or existing parent class.

Or, relocating all three terms somewhere under the Symptoms, signs chapter but secondary parenting somewhere within the Neurology chapter. ICD Revision's 2010 discussions for the potential for a Multisystem disorders chapter or a Multisystem disorders Linearization appear to have been rejected.

I just don't know, but I hope proposals will be released by September or December, latest.
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I'd assumed that Simon meant in another part of the 'Symptoms, signs, clinical forms etc.....' chapter rather than under 'pain' specifically, but in a separate MUPS subsection.
Can Simon clarify, please, whether he meant somewhere under Symptoms, signs chapter or specifically under this proposed new Chronic primary pain parent term?
Can Simon clarify, please, whether he meant somewhere under Symptoms, signs chapter or specifically under this proposed new Chronic primary pain parent term?
Should have been clearer - meant "Symptoms, signs chapter" generally.
The ICD-11 Symptoms, signs, clinical forms etc chapter is here:


Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified

Diseases can manifest in many ways and in different body systems. Such specific manifestation may be a reason for treatment or encounter, with or without identifying or addressing the underlying condition. The listed clinical forms allow to code such cases. These categories should be used in conjunction with a code from another chapter that identifies the underlying condition.

The same applies to the laboratory findings, signs and symptoms that are listed here by organ system.


The chapter is split up into:

General symptoms, findings and clinical forms
> General symptoms (which lists individual symptoms, including Fatigue, under which in the U.S. ICD-10-CM, Chronic fatigue >>Chronic fatigue syndrome NOS is listed)

> Abnormal findings in specimens etc.

then by lists of Organ systems.

@ Scarecrow

I'm not sure ICD Revision would consider creating a specific MUPS category under the Symptoms, signs chapter.

For a start, the concept of "medically unexplained" has been eliminated for ICD-11. The defining characteristics and criteria for ICD-11's Bodily distress disorder within the Mental and behavoural disorders chapter are very similar to DSM-5's SSD. (Somatic symptom disorder is inserted under Synonyms to BDD.)

Like SSD, ICD-11's BDD accommodates distressing, persistent single or multiple (unspecified) bodily symptoms, which can include pain. The diagnosis has been expanded to include symptoms of unexplained etiology or where a diagnosed general medical condition is causing or contributing to the symptoms.

So there is already a diagnosis within the classification that subsumes MUPS and extends the diagnosis to include excessive psychobehavioural responses to "medically explained" symptoms.

Dr Geoffrey Reed (Senior Project Officer and co-chair, TAG Mental Health) has told me that when the G93.3 legacy terms are restored to the draft, he would be happy to request exclusions under BDD. I have already got requests in via the Proposal Mechanism for exclusions for these terms under BDD and under Fatigue (was Malaise and fatigue in ICD-10).

Bodily distress disorder
is already excluded under Fatigue.

But as I say, I would not rule out the potential proposal for location or secondary parenting of one or more of the three ICD-10 legacy terms under some new or existing parent class, within the Symptoms, signs chapter.

That would bring ICD-11 more in line with ICD-10-CM. But out of whack with ICD-10-CA and ICD-10-GM (which have all three coded in Neurology, at G93.3).
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