WHO retires “Benign” from “Benign myalgic encephalomyelitis” for final ICD-10 release

Post #357 Shortlink: https://wp.me/pKrrB-56g

In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms:

Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Chronic fatigue syndrome

are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11.

I have an update on ICD-10 and it’s good news!

In January, the WHO released ICD-10 Version: 2019. With ICD-11 on the horizon, this release will be the final update for the WHO’s international version of ICD-10, apart from corrections and exceptional additions.

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

This request for a change was approved by the URC in September 2016 for implementation in the next release. 

For ICD-10 Version: 2019, the G93.3 Tabular List inclusion term is now Myalgic encephalomyelitis.

(The term, “Benign myalgic encephalomyelitis” has been retained as an Index term.)

 

View the revised listing for the G93.3 codes on the ICD-10 Browser, here: https://icd.who.int/browse10/2019/en#/G93.3 or in the screenshot, below.

Note that for ICD-10, Chronic fatigue syndrome is not included in the Tabular List but is included in Volume 3: Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term.

For ICD-11, the WHO has retained Postviral fatigue syndrome as the concept title term in Chapter 08: Diseases of the nervous system under parent: Other disorders of the nervous system. The new code for ICD-11 is: 8E49.

Benign myalgic encephalomyelitis and Chronic fatigue syndrome are both specified as inclusion terms under Postviral fatigue syndrome in ICD-11’s equivalent to the Tabular List and take the 8E49 code. A number of historical and alternative terms are retained as index terms and all 14 index terms are coded to 8E49.

 

This is how the G93.3 terms are classified for ICD-10 Version: 2019:

Image 1: ICD-10 Browser Version: 2019, Accessed February 20, 2020: https://icd.who.int/browse10/2019/en#/G93.3

Image location: https://dxrevisionwatch.files.wordpress.com/2020/02/meicd1019.png

 

The WHO expects Member States to be using the most recent release of ICD-10. But countries will implement the ICD-10 Version: 2019 release according to their own schedules. 

NHS England and ICD-10:

NHS England currently uses ICD-10 Version: 2016. I have contacted NHS Digital’s classifications lead to establish whether NHS Digital intends to implement Version: 2019 or may be considering skipping the new release in preference to implementing ICD-11, at some point in the future.

If there is no mechanism for incorporating selected changes in a new release into earlier versions, NHS England might not be able to absorb this change into the version it is using.

 

Will this change be absorbed automatically for ICD-11?

This revision for the final release of ICD-10 sets a precedent for the national modifications of ICD-10, for example, the U.S. ICD-10-CM and Canadian ICD-10-CA, but also for ICD-11. 

Proposals submitted in March 2017 by Chapman & Dimmock, and by the IACFS/ME for removing “Benign” from “Benign myalgic encephalomyelitis” were rejected by the WHO in early 2019.

In February, I submitted a new proposal for removal of the “Benign” prefix for ICD-11 citing the URC’s 2016 decision and the implementation of that decision for the final release of ICD-10.

You can read a copy of my new proposal and rationale here: http://bit.ly/BenignICD11

I have updated the PDF included in my report in the December edition of the ME Global Chronicle to reflect this change:

Download the PDF of my updated report here:

Update on the classification of PVFS, ME and CFS for ICD-11 Report One | November 2019 | v3 18/02/20

 

An edited version of this report is scheduled for publication in the March edition of the ME Global Chronicle.

WHO approves exclusions for PVFS, ME and CFS under ICD-11’s Bodily distress disorder

Post #356 Shortlink: https://wp.me/pKrrB-555

An edited version of this report is scheduled for publication in the March edition of the ME Global Chronicle.

For ICD-11, most of the ICD-10 F45 Somatoform disorders categories and F48.0 Neurasthenia have been replaced by a single new category called “Bodily distress disorder” (BDD). 

Although this sounds like it might be very similar to Per Fink’s Bodily distress syndrome (BDS), ICD-11’s BDD is conceptually closely aligned with the DSM-5’s Somatic symptom disorder (SSD).

For ICD-11, Somatic symptom disorder is listed under Synonyms under BDD but is not coded as an inclusion term.

Both the WHO and Prof Fink have clarified that as defined for ICD-11, BDD is a conceptually different disorder construct — ICD-11’s BDD and Fink’s BDS are differently defined and characterised, have very different criteria and are inclusive of different patient sets.

For ICD-11, the BDD diagnosis requires both the presence of one or more chronic, distressing bodily symptoms (which can be “medically unexplained” or caused or exacerbated by a general medical condition) and “excessive attention” or “disproportionate or maladaptive” thoughts, feelings or behavioural responses to these symptoms. BDD can capture a percentage of patients with ME, CFS or other general medical diseases or conditions — if the clinician considers the patient also meets the disorder description for application of an additional mental disorder diagnosis of BDD. 

In contrast, Fink’s BDS disorder construct requires physical “symptom patterns” or “clusters” from one or more body systems; the symptoms must be “medically unexplained” and there is no requirement for emotional or behavioural responses to meet the criteria. If the symptoms can be better explained by a general medical disease, they cannot be labelled “BDS”. But crucially, Fink’s BDS is inclusive of ME, CFS, IBS and FM and subsumes these under a single, unifying diagnosis.

The terms “bodily distress disorder” and “bodily distress syndrome” have been used synonymously since 2007. Not surprisingly, researchers, academics and practitioners are already confusing and conflating ICD-11’s new “Bodily distress disorder” with Fink’s “Bodily distress syndrome”.

Although BDD can potentially be applied to patients with chronic, distressing symptoms associated with any general medical disease or condition, patients with a diagnosis of ME or CFS (or who are waiting for a diagnosis) may be particularly vulnerable to misdiagnosis with BDD or misapplication of an additional BDD mental disorder diagnosis, as a “bolt-on” to their existing diagnosis. 

Exclusions for the 8E49 terms under MG22 Fatigue and a reciprocal exclusion for MG22 Fatigue under 8E49 Postviral fatigue syndrome were secured by April 2019.

However, the need for adding exclusions for PVFS, ME and CFS under ICD-11’s BDD to mitigate the risk of misdiagnosis or misapplication had not been acknowledged or accepted by the WHO.

In my report in the December edition of the ME Global Chronicle, I mentioned that the proposals submitted by Chapman & Dimmock (March 2017) and by Lily Chu MD on behalf of IACFS/ME (March 2017) for exclusions for the three 8E49 terms under 6C20 Bodily distress disorder and for exclusion of 6C20 Bodily distress disorder under the 8E49 Postviral fatigue syndrome concept title had been rejected. 

In December 2019, I submitted a new proposal for exclusions for the three 8E49 terms under 6C20 Bodily distress disorder, supported by a new rationale text. 

I am very pleased to inform you that in January the WHO approved and implemented my proposal.

You can view the addition of the three exclusions under ICD-11’s Bodily distress disorder here: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268

Image 1: ICD-11 for Mortality and Morbidity Statistics (Maintenance Platform), Accessed February 18, 2019:

 

I have updated the PDF of my report in the December edition to reflect the addition of exclusions.

Download my updated report here: http://bit.ly/ICD11Update 

 

The WHO Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders:

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders” (an equivalent publication to ICD-10’s “Blue Book”).

The CDDG provides 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. This companion publication is intended for mental health professionals and for general clinical, educational and service use.

The WHO has said it planned to release the CDDG “as soon as possible” after WHA’s adoption of ICD-11. But it remains unclear whether the CDDG has been finalised or if it will be released later this year or next year.

See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback on the drafts, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the full clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.

 

Additional resources:

Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

Post: World Health Assembly adopts ICD-11: When will member states start using the new edition? June 17, 2019

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019

Draft Resolution for recommendation of adoption and endorsement of ICD-11 at May 2019 World Health Assembly

Post #351 Shortlink: https://wp.me/pKrrB-4OJ

An update on World Health Organization (WHO) Executive Board and World Health Assembly (WHA) business:

The 144th Session (EB144) of the World Health Organization Executive Board took place in Geneva between 24 January — 1 February 2019.

Executive Board 144th Session website

“The Executive Board is composed of 34 individuals technically qualified in the field of health, each one designated by a Member State elected to do so by the World Health Assembly. Member States are elected for three-year terms.

“The Board meets at least twice a year; the main meeting is normally in January, with a second shorter meeting in May, immediately after the Health Assembly. The main functions of the Executive Board are to give effect to the decisions and policies of the Health Assembly, to advise it and generally to facilitate its work.”

These January Executive Board meetings generate a considerable number of documents. Documentation is available from this page EB144 Meeting Documents.

Key document for Recommendation for Adoption of ICD-11 at WHA72:

World Health Organization, EXECUTIVE BOARD 144th Session

Provisional agenda item 5.9

EB144/22 12 December 2018

Eleventh revision of the International Classification of Diseases

Report by the Director-General

On p10 (Item 53), the Executive Board was invited to consider a draft resolution.

Below is the document containing the text of the draft resolution with proposed amendments from Member States inserted in bold text:

World Health Organization, EXECUTIVE BOARD 144th Session

Agenda item 5.9

EB144/CONF./9 31 January 2019

Eleventh revision of the International Classification of Diseases

Draft resolution proposed by the Secretariat with amendments from Member States

World Health Assembly

The 72nd World Health Assembly takes place this month, in Geneva, from 20 — 28 May 2019.

“The World Health Assembly is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The main functions of the World Health Assembly are to determine the policies of the Organization, appoint the Director-General, supervise financial policies, and review and approve the proposed programme budget. The Health Assembly is held annually in Geneva, Switzerland.”

72nd World Health Assembly (WHA72)

Documentation page for WHA72

Two key documents for Recommendation for Adoption of ICD-11 at WHA72:

WHO SEVENTY-SECOND WORLD HEALTH ASSEMBLY

Provisional agenda item 12.7 

A72/29 4 April 2019

Eleventh revision of the International Classification of Diseases

Report by the Director-General

Extract:

“1. The Executive Board at its 144th session considered an earlier version of this report,¹ containing a draft resolution.² The Board noted the report but agreed to suspend consideration of the draft resolution so that informal consultations could be held during the intersessional period prior to the Seventy-second World Health Assembly. A separate report will be submitted to provide details of the outcome of the consultations.³”


1 Document EB144/22.
2 See the summary records of the Executive Board at its 144th session, eleventh meeting and twelfth meeting, section 1.
3 Document A72/29 Add.1.

and the revised Draft Resolution on ICD-11:

Provisional agenda item 12.7 

A72/29 Add.111 April 2019

Extract:

“1. In line with the course of action agreed by the Executive Board at its 144th session in January 2019,¹ the Secretariat convened informal consultations during the intersessional period in respect of a draft resolution on the eleventh revision of the International Classification of Diseases. The consultations took place in Geneva on 22 February, 7 March and 21 March 2019. The three sessions enabled the draft resolution to be revised.”


1 Document A72/29.

Should any additional documents relating to the presentation of ICD-11 for recommendation for adoption be posted on the WHA72 documents page I will update this post.

The most recent release of the ICD-11 MMS version for preparation for implementation, Coding tool, Reference Guide and additional materials can be viewed here:

ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019)

If adopted, endorsement would not come into effect until 1 January 2022.

 

Information session on ICD-11 slides

Document EB144/22 (Report by the Director-General) included a link for slides from a presentation given by Dr Robert Jakob, Team Leader, WHO, Geneva, Classifications, Terminologies and Standards:

Presentation slides (Dr Robert Jakob, November 2018):

Information session on ICD-11

I have been unable to find a transcript or video for this presentation. The slides include an overview of the structure of ICD-11, timelines for preparation for adoption, overview of proposed draft resolution, implementation package, post-endorsement maintenance and update process etc.

Slide 20/31:

Slide #22 notes outcomes of several CSAC and MSAC reviews and decisions, including the decision in November 2018 to retain the ICD-10 G93.3 entities (Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome) in the Diseases of the nervous system chapter [1][2]:

Slide 22/31:

References:

1 ICD-11 proposal submitted by Dr Tarun Dua on November 06, 2017; Processed on November 19, 2018

2 WHO’s rejection of Dr Tarun Dua’s proposal of November 06, 2017

3 For status of proposals for PVFS, BME and CFS see Post #350: ICD-11: Recently processed proposals for Postviral fatigue syndrome, ME, CFS; Fatigue; and Bodily distress disorder

and PDF: Recently processed ICD-11 proposals v3

ICD-11: Recently processed proposals for Postviral fatigue syndrome, ME, CFS; Fatigue; and Bodily distress disorder

Post #350 Shortlink: https://wp.me/pKrrB-4Nz

ICD-11 endorsement

Next month, the World Health Organization (WHO) intends to present a stable version of ICD-11 to the 72nd World Health Assembly for member state endorsement.

The WHO Executive Board will submit a Resolution for adoption of what it describes as a “preparation for implementation” version of the ICD-11 Mortality and Morbidity Statistics (ICD-11 MMS).

 

#WHA72 Geneva May 22–28, 2019 

Website: SEVENTY-SECOND WORLD HEALTH ASSEMBLY

Two key documents:

Provisional Agenda Item 12.7 (A72/29): ICD-11 Report by the Director-General

(A72/29 Add.1): Draft Resolution for adoption of ICD-11

 

If adopted, endorsement would not come into effect until 1 January 2022.

After that date, member states can begin reporting data using the ICD-11 code sets when their countries have prepared their health systems for transition and implemented the new edition.

There is no mandatory date by which member states must migrate to the new edition and for a period of time, data will be collected and aggregated using both ICD-10 and ICD-11. It’s anticipated that even the earliest implementers will take several years to prepare their countries for transition.

 

Update and revision

Once endorsed, ICD-11 will be subject to an annual update and revision process, as ICD-10 has been.

Minor changes to content can be considered for incorporation on an annual basis. Major changes would be considered for incorporation on a 5 yearly update cycle.

Responsibility for reviewing and processing proposals now lies with the Medical Scientific Advisory Committee (MSAC) and the Classifications and Statistics Advisory Commitee (CSAC), which takes over from the ICD-10 Update and Revision Committee (URC). These committees are working through a backlog of proposals.

The ICD-11 Proposal Mechanism platform will remain online and open to stakeholders for new comments and new submissions for changes, additions and improvements. Submissions for changes will also be received from member states via the WHO-FIC Network.

[See ICD-11 Reference Guide: 3.8 Annex: ICD-11 Updating and Maintenance for information on the ICD-11 update and revision cycle and protocol for submission of new proposals.]

 

Recently processed proposals

Between February and April, this year, a number of proposals were processed.

These include proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; proposals for Fatigue (was Malaise and fatigue in ICD-10); and proposals for Bodily distress disorder.

Proposals submitted before March 30, 2017 were supposed to have been reviewed before the end of 2017 for consideration for potential inclusion in the initial release of the ICD-11 MMS — but many of these weren’t processed, despite having met the submission deadline.

Proposals relating to Postviral fatigue syndrome and its inclusion terms were in any case put on hold while an evidence review was undertaken. This review was not completed until late 2018.

This batch of recently processed proposals includes proposals submitted by Suzy Chapman (since 2014); by Suzy Chapman and Mary Dimmock (March 2017); and by Lily Chu MD on behalf of the IACFS/ME (March 2017).

The proposal submitted by the WHO’s Dr Tarun Dua, in November 2017, to delete Postviral fatigue syndrome from the Diseases of the nervous system chapter and reclassify ME/CFS [sic] in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system was processed in November 2018.

The WHO rightly rejected Dr Dua’s proposal, in a decision supported by the MSAC and CSAC Committees.

 

Status of processed proposals at April 15, 2019:

In order to access the ICD-11 Proposal Mechanism registration with the platform is required and the platform is clunky to navigate.

For ease of access, I have created a table which sets out the outcome of these processed proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; Fatigue; and Bodily distress disorder.

(If you already have v1 or v2 of this document, please replace with v3 below, as this document has been updated to include the approval of an exclusion for PVFS under Fatigue.)

Download PDF Table: Recently processed ICD-11 proposals v3

Extract:

 

 

ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019) version for preparing for implementation as it currently stands:

08 Diseases of the nervous system

8E49 Postviral fatigue syndrome

Update on the removal of “neurasthenie” from SNOMED CT Netherlands Edition

Post #348 Shortlink: https://wp.me/pKrrB-4N6

As reported in Post # 345, the SNOMED CT Concept SCTID: 192439005 Neurasthenia (disorder) and its associated SCTID Concept terms were retired (Inactivated) from SNOMED CT’s International Edition and from national editions some years ago.

However, the Netherlands Edition retained the term neurasthenie under the SCTID: 52702003 chronischevermoeidheidssyndroom (CVS) Synonyms list. The neurasthenie term was exclusive to the Netherlands Edition, was assigned to the SCTID: 52702003 CVS code, and designated as an “Acceptable” Synonym term for CVS in the Netherlands Dutch language reference set.

 

Screenshot: SNOMED CT Netherlands Edition release for September 30, 2018:

 

Screenshot: SNOMED CT Netherlands Edition release for September 30, 2018:

Details tab:

 

Request for removal of the neurasthenie term:

In October 2018, a Netherlands advocate approached Pim Volkert (Terminology Co-ordinator, Nictiz, and lead for the Netherlands SNOMED CT National Release Centre) with a request and rationale for consideration of removal of the neurasthenie term, for consistency with SNOMED CT International Edition and with the WHO’s ICD-10, which specifically excludes G93.3 from F48.0 Neurasthenia.

This request and accompanying rationale was considered and promptly accepted for implementation in the March 31, 2019 release of the Netherlands Edition.

This approved content change has now been incorporated into the March 2019 release:

 

Screenshot: SNOMED CT Netherlands Edition as it now stands:

 

 

A note about retired SCTID Concept terms and retired Synonyms in SNOMED CT International Edition and national editions:

The technical term for the retirement of a SNOMED CT SCTID Concept or Synonym term is “Inactivation”. In order to display Inactive concepts, go to:

https://browser.ihtsdotools.org/?

Accept the License Agreement, if displayed.

Select the specific edition required (eg the International Edition or one of the National Editions).

Look under Options on the left of the Search box.

Select:

“Status: Active and inactive concepts” from the Options dropdown.

Enter a search term into the Search box.

In the Matches list, Inactive concepts will display on a light pink ground.

Click on a term to display the historical Concept Details panel associated with that specific term (which will also display on a pink ground in the box under Parents in the Concept Details panel).

So although retired or “Inactive” terms can still be searched for within the SNOMED CT terminology browser, they are identified as Inactive by their pink ground.

NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders

Post #347 Shortlink: https://wp.me/pKrrB-4KP

Archived material

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

Clinical guideline [CG53] Published date: August 2007

 

NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders

 

Stakeholder List: Stakeholders_CFSME

Comments on NICE version (in alphabetical order of stakeholder 575 pp): nice-version-table-of-comments2

Comments on NICE version  (in alphabetical order of stakeholder 220 pp): NICEversion-tableofcomments

General comments from stakeholders (in alphabetical order of stakeholder 224 pp): General-tableofcomments

Comments on Chapter 1 (in alphabetical order of stakeholder 152 pp): Chapter1-tableofcomments

Comments on Chapter 2 (in alphabetical order of stakeholder 34 pp): Chapter2-tableofcomments

Comments on Chapter 3 (in alphabetical order of stakeholder 18 pp): Chapter3-tableofcomments

Comments on Chapter 4 (in alphabetical order of stakeholder 28 pp): Chapter4-tableofcomments

Comments on Chapter 5 (in alphabetical order of stakeholder 103 pp): Chapter5-tableofcomments

Comments on Chapter 6 (in alphabetical order of stakeholder 171 pp): Chapter6-tableofcomments

Comments on Chapter 7 (in alphabetical order of stakeholder 25 pp): Chapter7-tableofcomments

Comments on the Appendices (in alphabetical order of stakeholder 13 pp): Appendices-tableofcomments

 

These files and additional materials from the development process for the CG53 2007 can be found on the NICE History pages for the 2007 guideline:

https://www.nice.org.uk/guidance/cg53/history

 

A selection of points the Barts CF Service made during the NICE Guidelines for CFS/ME extracted by Tom Kindlon in 2007 can be found at this post on ME agenda site:

https://meagenda.wordpress.com/2007/09/06/a-selection-of-points-the-barts-cf-service-made-during-the-nice-guidelines-for-cfs-me-tom-kindlon/

 

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