Updates on ICD-11 and other classification and terminology systems

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Suzy Chapman Owner of Dx Revision Watch
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Comment in response to WAMES brief report re recent update on ICD-11:

Twitlonger: http://tl.gd/n_1sr4kdh


Comment in response to WAMES brief report re update on ICD-11:

https://wames.org.uk/cms-english/me-cfs-no-longer-classified-as-bodily-distress-disorder-bdd/

January 27, 2020

Thank you WAMES for highlighting this recent development for ICD-11 and for your kind words. I'd like to take this opportunity to provide a little more context:

In ICD-10, there isn't a category, as such, called "Medically unexplained symptoms (MUS)". But most of the categories in the ICD-10 F45 Somatoform disorders block incorporate the concept of "medically unexplained symptoms".

The IAPT service makes use of the F45 codes as there is no specific ICD-10 code for "MUS".

Most of the ICD-10 Somatoform disorders categories between F45.0 and F45.9 have been replaced for ICD-11 with the new single category, "Bodily distress disorder (BDD)" with Mild; Moderate; and Severe specifiers.

ICD-10's F48.0 Neurasthenia and its inclusion term, Fatigue syndrome, are also subsumed and replaced by this new "Bodily distress disorder (BDD)" category.

ICD-10 has an exclusion for the G93.3 terms under F48.0 Neurasthenia which redirects the coder or clinician to the G93.3 listing.

The NHS Digital publication: "National Clinical Coding Standards ICD-10 5th Edition" contains this advisory note for coders and clinicians in relation to F48.0:

https://dxrevisionwatch.files.wordpress.com/2019/04/clinical-standards-5th-edition.png



But this exclusion for the ICD-10 G93.3 terms wasn't carried forward for the draft of ICD-11 and neither was the existing exclusion for the ICD-10 G93.3 terms under R53 Malaise and fatigue - so both these issues needed addressing.

In November 2018, the WHO decided that for ICD-11, the G93.3 legacy terms would be retained in the Diseases of the nervous system chapter as following an extensive review, they had determined that "currently there is no evidence to suggest a better place".

They also rejected a proposal submitted by Dr Tarun Dua, on behalf of the Neurology working group, that CFS and ME should be removed from Diseases of the nervous system and reclassified under the Symptoms, signs chapter, as a child of "Symptoms, signs or clinical findings of the musculoskeletal system".

These decisions were supported by the ICD-11 Medical and Scientific Advisory Committee (MSAC) and the WHO-FIC Classification and Statistics Advisory Committee (CSAC).

So PVFS; (B)ME and CFS remain under the Neurology chapter for ICD-11, with PVFS retained as the "Concept Title". BME and CFS are both specified as Inclusions under 8E49 PVFS and take the 8E49 code.


The new ICD-11 category, "Bodily distress disorder" is very similar to the DSM-5's "Somatic symptom disorder (SSD)".

Both potentially capture patients who might previously have been given a diagnosis of one of the F45 Somatoform disorders. But they can also be applied to some patients with chronic, distressing symptoms associated with a diagnosed general medical disease and condition, and to some of those diagnosed with one or more of the so-called "functional somatic syndromes".

So for BDD, the symptoms can be "medically unexplained" or a general medical disease or condition may be causing or contributing to the symptoms.

For BDD, it is not the nature of the symptoms or their aetiology that is the focus, but whether the patient's response to their chronic, distressing symptoms is perceived as "excessive attention" or "maladaptive"; or in the case of a diagnosed general medical condition, if "the degree of attention is clearly excessive in relation to [the disease's] nature and progression".

It can apply to patients with chronic, multiple symptoms or complaining of a single chronic symptom, like pain or fatigue.

Potentially, patients diagnosed, for example, with cancer, angina, diabetes, MS, ME, CFS, Parkinson disease, rare or difficult to diagnose diseases, especially those that present with multiple symptoms, could attract an additional mental disorder diagnosis of "Bodily distress disorder" - if the clinician considers the patient also meets the "Bodily distress disorder" disorder description. Or they could be at risk of being misdiagnosed with "Bodily distress disorder".

Additionally, the term "Bodily distress disorder" has been used since 2007 interchangeably for the differently conceptualised Fink et al (2007, 2010) "Bodily distress syndrome (BDS)" which is already in use in Denmark and beyond, in both research and clinical settings.

Academics, researchers and clinicians are already confusing and conflating ICD-11's "Bodily distress disorder" with the Fink et al "Bodily distress syndrome (BDS)", under which diagnostic construct, Fink and his colleagues subsume and replace CFS, ME, IBS and Fibromyalgia under a single, unifying "BDS" disorder.

Psychiatrists based in the UK are already authoring chapters in books for international paediatric guidelines recommending that children and young people with a diagnosis of ME, CFS where there is not evidence for a viral onset should be considered for a diagnosis of "Bodily distress disorder".

So it has been crucial to secure exclusions under "Bodily distress disorder" for the PVFS; (B)ME and CFS category terms, as this patient group is one of a number of patient groups that will be particularly vulnerable to misapplication of this new ICD-11 category.

(Exclusions for the 8E49 terms under ICD-11's MG22 Fatigue were also submitted for and secured in 2017 and 2019.)


For a PDF copy of the Rationale submitted in support of my Proposal for addition of exclusions for the 8E49 terms see:

Rationale for Proposal for exclusions under BDD, December 02, 2019:
https://dxrevisionwatch.files.wordpress.com/2020/01/rationale-bdd-exclusions-december-02-2019-1.pdf

For a bite-sized overview of the coding of the 8E49 terms in ICD-11, plus annotated screenshots see:

Post #80 on Phoenix Rising Forum:

Updates on ICD-11 and other classification and terminology systems:
https://forums.phoenixrising.me/thr...terminology-systems.59088/page-4#post-2255295

or see Post #377 on S4ME forum:

Updates on ICD-11 and other classification and terminology systems:
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-19#post-232494

For a more detailed overview of the coding of these terms in ICD-11, see the report that was included in the January 2020 edition of the ME Global Chronicle:

Update on classification of PVFS ME CFS for ICD-11 (v2 updated 25/01/20):
https://dxrevisionwatch.files.wordp...assification-of-pvfs-me-cfs-for-icd-11-v2.pdf


Finally, several additional chapters have been added for ICD-11 and the coding structure and chapter numbering has been re-organized.

For ICD-11, Chapter V Mental and behavioural disorders becomes Chapter 06 Mental, behavioural or neurodevelopmental disorders.

Chapter VI Diseases of the nervous system becomes Chapter 08 Diseases of the nervous system, and between these renumbered chapters, a new chapter called: 07 Sleep-wake disorders has been inserted.

I hope your group members and your wider readership will find this additional context helpful.

Suzy Chapman, Dx Revision Watch
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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6,087
Location
UK

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Report by Suzy Chapman, Dx Revision Watch

March 12, 2020

A request has been submitted by someone in NHS England for adding the term "Systemic exertion intolerance disease" to SNOMED CT terminology system, as a Synonym under SNOMED CT Concept code: 52702003 Chronic fatigue syndrome.

The UK Edition of SNOMED CT is managed by NHS Digital [1].

Members of the public can access a database of previous requests for changes and additions to SNOMED CT and view the status and outcome of these requests. But only SNOMED CT license holders can register for access to the online request submission forms to submit new requests.

In the context of IAPT's November 2019 request for addition of the DSM-5 term "Somatic symptom disorder" to the SNOMED CT UK Edition [1], I had been looking at requests submitted during the last four months.

I wanted to get a feel for how long it takes requests to be processed, how many are referred on to SNOMED International's terminology leads for their advice, or have been referred on for consideration for potential inclusion in the International Edition.

I stumbled by chance across this request which had been submitted in November, last year:

NHS Digital SNOMED CT Submission Portal: Request 30104:

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=30104




Please note the following:

1 Request 30104 was submitted on November 30, 2019. It appears to originate from someone within the NHS as no external requester is referenced.

2 The request is for adding "Systemic exertion intolerance disease" as a Synonym term under existing SNOMED CT Concept: 52702003 Chronic fatigue syndrome.

3 The request's priority is designated as "Minor".

4 The request's current status is "Referred to SNOMED International" and is assigned the SNOMED International request reference number: 748360.

5 My understanding is that the U.S. Institute of Medicine (now known as "The National Academy of Medicine") did not "rename" CFS/ME in 2015.

The panel that produced the IOM Report had included a Recommendation for the name "Systemic exertion intolerance disease" for the sponsor health agencies' review and consideration, as one of a number of Recommendations made within its January 2015 Report.

6 NCHS-CDC has yet to approve any proposals for adding the SEID term to the U.S.'s ICD-10-CM.

Two sets of proposals were presented for discussion and consideration at the ICD-10-CM Coordination and Maintenance Committee Meeting, September 11-12, 2018 [3].

But no decision was arrived at.

To date, the SEID term has not been added to the U.S.'s ICD-10-CM, either as a newly created code or sub code, or as an inclusion under one of the existing terms, or as a replacement for one or more of the existing terms, or added as an index term.

Nor has the term "Systemic exertion intolerance disease" been included in the final update of the WHO's international edition of ICD (ICD-10 Version: 2019).

Nor has the term been included in ICD-11.

The term has not been added to the U.S. Edition of SNOMED CT, either as a new Concept code or under Synonyms to existing Concept code: 52702003 Chronic fatigue syndrome.

7 For NHS England, SNOMED CT UK Edition has been the mandatory terminology system for use in primary care since 2018. NHS England plans to implement SNOMED CT UK Edition across all secondary care, mental health, dental and other NHS settings from this year.

If the "Systemic exertion intolerance disease" term were to be approved for inclusion in the SNOMED CT International Edition the term would be absorbed into all the national editions when they release their next updates.

8 I plan to be retired by the end of May but until then, I will commit to monitoring and updating on any changes to the status of this request. Beyond May, U.S., UK and international advocates and organisations will need to take responsibility for monitoring the progress of this request.

9 I am unable to advise international advocates and organisations on what response might be made to this request for addition of the SEID term as a Synonym under SNOMED CT Concept code: 52702003 Chronic fatigue syndrome and I shall be making no response, myself, to either NHS Digital or to SNOMED International.

But my position remains that I oppose the addition of the term "Systemic exertion intolerance disease" to any classification or terminology system.

References:

1 NHS Digital SNOMED CT Submission Portal: Request 30104:
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=30104

2 S4ME thread: IAPT requests addition of DSM-5's Somatic symptom disorder (SSD) to SNOMED CT for use in Data Set v2.0 to replace "MUS - not otherwise specified"
https://www.s4me.info/threads/iapt-...us-not-otherwise-specified.13691/#post-237462

3 ICD-10-CM Coordination and Maintenance Committee Meeting, September 11-12, 2018, Diagnosis Agenda Part 2, Page 11: Chronic Fatigue Syndrome
https://www.cdc.gov/nchs/data/icd/Topic_packet_Sept_2018_part2.pdf


Suzy Chapman
http://dxrevisionwatch.com
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The WHO approves my proposal for removal of “Benign” from “Benign myalgic encephalomyelitis” for ICD-11

ICD-11 Report Four | December 2020

“Benign myalgic encephalomyelitis” was first listed in the International Statistical Classification of Diseases and Related Health Problems (ICD) in 1969 as an index term in the ICD-8 Alphabetical Index, as “Encephalomyelitis (myalgic, benign)”.

“Benign myalgic encephalomyelitis” wasn’t included in the ICD-8 Tabular List.

For ICD-9 (1975), “Encephalomyelitis (myalgic, benign)” remained an index term in the Alphabetical Index (1978) and again, there was no listing of the term in the ICD-9 Tabular List [1].


International version of ICD-10

“Benign myalgic encephalomyelitis” wasn't included as a Tabular List term until the release of ICD-10, in 1992.

ICD-10 included many modifications, including relocation of some ICD-9 categories to different chapters of the classification.

The WHO created a new Tabular List category block G93: Other disorders of brain, in Chapter VI: Diseases of the Nervous System.

The ICD-9 category, “Postviral syndrome” (coded in ICD-9 Tabular List under the Symptoms, Signs And Ill-defined Conditions chapter) was moved under this new G93 parent block as “Postviral fatigue syndrome” and assigned the code G93.3.

The index term “Benign myalgic encephalomyelitis” was moved into the ICD-10 Tabular List as the inclusion term under the new Concept Title: G93.3 Postviral fatigue syndrome.

“Chronic fatigue syndrome” was added to ICD-10 Volume 3: Alphabetical Index and indexed to the G93.3 code [2].


A request for removal of the “Benign” prefix for ICD-10

In March 2016, a representative from Canadian Institute for Health Information submitted a request and brief supporting rationale to the WHO-FIC ICD-10 Update and Revision Committee (URC) for removal of the “Benign” prefix from “Benign myalgic encephalomyelitis”.

The URC approved this request for ICD-10 in September 2016 for implementation after January 2018. View a copy of the request here [3].

The change was implemented for the final update of the WHO’s International version of ICD-10 (ICD-10 Version: 2019) which was released in January 2020.

Note: “Benign myalgic encephalomyelitis” has been retained as an ICD-10 index term for backward statistical compatibility and comparability over time with earlier versions of ICD-10 and with the national modifications of ICD-10.

View the change for the ICD-10 (Version: 2019) Tabular List here: https://bit.ly/33CrdjM

Although this change for ICD-10 had been approved in September 2016, it had not been carried forward to ICD-11 by the WHO or by the ICD Revision committees with oversight of the ICD-11 development process.


March 2017 proposals for ICD-11 rejected

In March 2017, Suzy Chapman and Mary Dimmock; and Lily Chu MD (on behalf of the IACFS/ME) submitted two separate proposals for ICD-11 which, among other recommendations, had included rationales for the removal of “Benign” from the “Benign myalgic encephalomyelitis” inclusion term.

ICD Revision rejected both sets of proposals outright in March 2019. The WHO/ICD Revision provided no rationale for their decision to reject this recommendation.

(It was not apparent until January 2020 that the URC had already made a decision back in 2016 to approve the retirement of the “Benign” term from the next update of ICD-10, so this historical decision could not inform our proposal rationales.)


A new proposal for ICD-11

In February 2020, I submitted a new proposal and rationale text for removal of the “Benign” prefix for ICD-11 citing among other reasons, the precedent decision of the URC in September 2016 and the implementation of that decision for the final release in the life of ICD-10.

View a copy of my proposal and rationale text here: http://bit.ly/BenignICD11

I had hoped this new proposal might be reviewed in time for potential addition to the next annual update of the ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS), which was expected to be released at some point after April 2020.

Despite approaching WHO Director-General Dr Tedros Ghebreyesus with a request that this proposal was fast tracked for review, it sat unprocessed for over six months and missed the deadline for potential inclusion in the annual update of the ICD-11 for Mortality and Morbidity Statistics, which was released in September 2020 [4].

However, this new proposal was finally approved on November 13, 2020.

Image: ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform, Accessed November 20, 2020: https://bit.ly/3lZdY3U

Benign retired for ICD-11 13.11.2020.png




The Exclusions for PVFS; BME; and CFS under 6C20 Bodily distress disorder have been revised to reflect the removal of the "Benign" prefix: https://bit.ly/36yBrUp

Exclusions for PVFS; BME; and CFS under MG22 Fatigue have also been revised to reflect this revision: https://bit.ly/3mxIguR

As with ICD-10, the term, “Benign myalgic encephalomyelitis” has been retained as an ICD-11 index term, for backward compatibility and comparability over time with older versions of ICD and the national modifications.

This revision to the terminology will be incorporated into the next annual release of the ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS), anticipated around September 2021.

Removal of “Benign” from “Benign myalgic encephalomyelitis” for the final update of the WHO’s International version of ICD-10 — and now approved for ICD-11 — has been widely welcomed and sets a precedent for all the national modifications of ICD-10.

Note that Germany’s ICD-10-GM and Australia’s ICD-10-AM had already retired the “Benign” prefix some years ago for their national modifications of the WHO’s International version of ICD-10.


References

1 Screenshots from the ICD-8 and ICD-9 Tabular Lists and Indexes: Science for ME Forum (S4ME): https://bit.ly/3fx2yCe

2 A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, March 2001: https://bit.ly/3ql6ElV

3 Proposal ID: 2211, March 16, 2016, ICD-10 Update and Revision Platform: https://bit.ly/3qlf1he

4 ICD-11 for Mortality and Morbidity Statistics (Version: 09/2020) annual release, September 2020: https://bit.ly/37uztDD

Please note: I retired from advocacy work at the end of November 2020.

Suzy Chapman

Dx Revision Watch
https://dxrevisionwatch.com
 
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lenora

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Suzy.....Hello. You did a fine job and I, personally, thank you for your advocacy work...others have obviously joined in and probably know more about it than I do.

It isn't easy to be the agitator for change and you certainly deserve more than our thanks. You've done a great service. May 2021 find you doing what your heart desires. Yours, Lenora.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thank you, Lenora, for your kind words.

A selection of reports compiled over the last two years:

Some of these documents have been revised this month to include updates on the outcome of ICD-11 proposals, updates on timelines, revised links and for text revisions.


1 Update on classification and coding of PVFS, ME and CFS for ICD-11, v7, November 2020
https://bit.ly/2Ja3fWg


2 NHS Digital requests addition of SEID to SNOMED CT, March 2020
https://bit.ly/2IXZzaa


3 Update to report: NHS Digital requests addition of SEID to SNOMED CT, September 2020
https://bit.ly/3pEp8NI


4 Update on classification of Bodily distress disorder in ICD-11, v2, November 2020
https://bit.ly/37pnwiI


5 Statement on SNOMED CT and Bodily distress disorder v3, November 2020
https://bit.ly/3q7FHSG


6 Comparison of SSD, BDD, BDS and BSS in classification systems v2, November 2020 (Original July 2018 version with Mary Dimmock)
https://bit.ly/33uD0kv


7 Comparison of Classification and Terminology Systems v4, November 2020 (Original July 2018 version with Mary Dimmock)
https://bit.ly/360BSGH


8 World Health Organization removes "Benign" from "Benign myalgic encephalomyelitis" for ICD-11, November 2020
https://bit.ly/3mfv1yW


9 IAPT requests code for Somatic symptom disorder for SNOMED CT, November 2020
https://bit.ly/3fLpEVL



Update to report 9: IAPT requests code for Somatic symptom disorder for SNOMED CT, November 2020

The December 02, 2020 interim release for the SNOMED CT UK Edition has been released and is available on the public browser.

Just to confirm, there was no addition of a new Concept term for "Somatic symptom disorder" added to this November 02 interim release. Nor was a new term for SSD added under Synonyms to Bodily distress disorder or as a Synonym under any other existing Concept code.

The next release of the SNOMED CT International Edition will be the January 31, 2021 release.