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

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/

 

Comparison of Classification and Terminology Systems

Post #340 Shortlink: https://wp.me/pKrrB-4oG

We continue to see some confusion amongst ME and CFS patients, advocates and commentators around classification systems — what they are used for, whether they are mandatory for WHO member states, which terms are included in which systems and which countries use which versions.

In May, Suzy Chapman (DxRevisionWatch.com) and Mary Dimmock prepared a document to assist stakeholders in navigating the complexities of the disease classification and terminology systems.

 

Comparison of Classification and Terminology Systems

The purpose of this document is to summarize the key classification and terminology systems that are used internationally to capture information about disorders and diseases for the purposes of global mortality and morbidity tracking. These systems are also used for medical records, including EMRs (electronic medical records), in primary and secondary care.

Thumbnail

The most recent version of this document can be downloaded here Version 3 | July 2018

 

Document revision history:

Comparison of Classification and Terminology Systems Version 1

May 2018


 

Comparison of Classification and Terminology Systems Version 2

June 2018 – Updated to reflect release of an advance preview version of ICD-11 on June 18, 2018.


 

Comparison of Classification and Terminology Systems Version 3

July 2018 – Revised for clarity.

In Versions 1 and 2, we stated that the ICPC-2 Danish extension [1] included the term, Bodily distress syndrome. The document in reference [2] clarifies that whilst not included in the Danish extension, a diagnosis of functional disorder or a diagnosis of bodily distress syndrome can be coded for using the ICPC-2 P75 Somatoform forstyrrelse (Somatoform disorder) term.

1 ICPC-2 Danish extension
2 Funktionelle lidelser (Functional Disorders), Clinical guideline for general practice, Danish College of General Practitioners, 2013 (English translation, 2016). Page 8: What is the patient’s illness called?

 

Changes to SNOMED CT and Read Codes (CTV3) for CFS, ME and PVFS

Post #327 Shortlink: http://wp.me/pKrrB-4aD

Recent changes to SNOMED CT for CFS, ME and PVFS

  • Correspondence between Forward-ME and UK Health and Social Care Information Centre
  • SNOMED CT retires Mental disorder parent for Chronic fatigue syndrome and ME
  • Projected changes to April 2016 release of Read Codes Clinical Terms Version 3 (CTV3)
  • Read Codes system to be phased out as part of wider SNOMED CT implementation

In addition to ICD-10, a number of terminology and electronic health and medical record systems are used in the UK in primary, secondary, and health and social care clinical settings, which include:

OPCS-4 (classification of Surgical Operations and Procedures)

SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms, a comprehensive, multilingual clinical terminology system)

Read Codes (a coded thesaurus of clinical terms for recording patient findings and procedures in health and social care IT systems across primary and secondary care, e.g. GP surgeries and reporting of pathology results).

The National Information Board (NIB) has specified that all primary care systems adopt SNOMED CT by the end of December 2016 and that SNOMED CT is to be used as the single terminology in all health care settings in England, with a projected adoption date for the entire health system of April 2020 [3].

You can access a public SNOMED CT browser here: IHTSDO browser

This is an online browser and does not require any software to be downloaded. You will need to accept the license and then select for the UK “Local Extension” of SNOMED CT. Click on the “Search” tab to enter clinical terms.

The SNOMED CT International Edition and “Local Extensions” for a number of other countries, including the US, are also available via the browser. All editions release new updates twice a year, on a staggered schedule. The Release schedule for the UK Extension is April and October.

Read Codes system to be retired

The Read Codes system of clinical terms has been used in the NHS since 1985. As part of the adoption of SNOMED CT in primary care, Clinical Terms Version 3 (CTV3) is being deprecated.

More information on the phasing out of Read Codes, here:

Retirement of Read Version 2 and Clinical Terms Version 3

Click link for PDF document Retirement Schedule

There was no new release for CTV3 issued in October, but the April 2016 release is scheduled for Friday, 18th March 2016. The last release of CTV3 will be published in April 2018.

How have CFS and related terms been listed within SNOMED CT and CTV3?

SNOMED CT

Prior to July 2015, all editions of SNOMED CT had the following listings for CFS, ME and PVFS:

Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and several other related and historical terms listed under Synonyms) was assigned two parent disorder classes: Mental disorder, and Multisystem disorder.

Postviral fatigue syndrome was listed under Children to Chronic fatigue syndrome.

Read Codes (CTV3)

The twice yearly Read Codes releases (April and October) are available only to license holders but the codes can be viewed through this public resource (caveat: it is unclear how often this NCBO BioPortal ontology resource is updated with new releases for individual ontology systems):

See: BioPortal Xa01F

For CTV3, Xa01F Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and PVFS – Postviral fatigue syndrome under Synonyms) is listed, hierarchically, under two parent disorder classes: as a Sub Class of both Neurasthenia, under parent: Mental health disorder, and as a Sub Class of Neurological disorder.

See: http://purl.bioontology.org/ontology/RCD/Xa01F

Mental health disorder > Neurotic disorder > Somatoform disorder > Neurasthenia > Chronic fatigue syndrome

and

Neurological disorder > Chronic fatigue syndrome

See also the Visualization tab for a diagrammatic representation of dual parentage:

http://bioportal.bioontology.org/ontologies/RCD?p=classes&conceptid=Xa01F#visualization

Correspondence between Countess of Mar and UK Health and Social Care Information Centre

Forward-ME is an informal group for ME charities and voluntary organizations, chaired by the Countess of Mar, who also serves as Co-chair to the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).

Between November 2014 and June 2015, Lady Mar was in correspondence with Mr Leon Liburd, Senior Support Analyst Systems and Service Delivery, and Ms Elaine Wooler, Advanced Clinical Terminology Specialist, UK Health and Social Care Information Centre.

Their correspondence (in reverse date order) was published on the Forward-ME website in June and can be read here Correspondence re SNOMED added June 2015

or open PDF here on Dx Revision Watch

Click link for PDF document  Correspondence re SNOMED

Changes to SNOMED CT

As a result of these exchanges, Lady Mar was advised that the relationship between the entry for 52702003 Chronic fatigue syndrome and the Mental disorder parent had been retired. In future editions, Chronic fatigue syndrome would be listed under the single parent, 281867008 Multisystem disorder.

See here

Additionally, 51771007 Postviral fatigue syndrome was being removed as a subtype of 52702003 Chronic fatigue syndrome (disorder) – though no rationale for this specific decision appears to be provided within the correspondence.

See here

[So 51771007 Postviral fatigue syndrome would be no longer be listed as a sub class under Children to 52702003 Chronic fatigue syndrome but directly under two parents: 281867008 Multisystem disorder and 123948009 Post-viral disorder.]

These changes were effected in the July 2015 release for the International Edition (Release 20150731).

They were subsequently incorporated into the September 2015 US Extension (Release 20150901), the October 2015 UK Extension (Release 20151001) and the November 2015 Swedish Extension (Release 20151130). It is expected that other country Extensions will also reflect these changes in their forthcoming releases.

Within the correspondence, on 11 November 2014, Mr Leon Liburd had also advised Lady Mar:

“It is also noted that the corresponding representation in the UK’s Clinical Terms Version 3 terminology product Xa01F | Chronic fatigue syndrome is classified as both a Neurological disorder and a Mental health disorder. As such, any conclusions emerging from the SNOMED CT discussions would also be reflected in the CTV3 UK product.”

Clarification re CFS and CTV3

In November, I contacted the UK Health and Social Care Information Centre for clarification of how CFS and its various Synonyms are currently listed within CTV3.

On 20 November, I was advised by Karim Nashar, Terminology Specialist, UK Terminology Centre, Health and Social Care Information Centre, that:

“[Xa01F | Chronic fatigue syndrome was being moved] under a single supertype 281867008 | Multisystem disorder (disorder) as to reflect the SNOMED correction in CTV3″

and that this change should be reflected in the April 2016 CTV3 release.

As noted above, Clinical Terms Version 3 (CTV3) is being deprecated and the last release of CTV3 will be published in April 2018.

The ICD-11 Beta draft and proposed classification of the G93.3 legacy terms

In June, WHO’s Dr Robert Jakob had told me that if TAG Neurology’s proposals and rationales for the G93.3 legacy terms were not ready for public release in September, he projected their release by December, latest (see towards end of Post #324).

No proposals were released in September and none in December. Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

On 28 December, I called again, via the ICD-11 Beta Comments mechanism, for these terms to be restored to the public version of the Beta drafting platform.


 References

1 UK Terminology Centre (UKTC): http://systems.hscic.gov.uk/data/uktc/

2 SNOMED CT: http://systems.hscic.gov.uk/data/uktc/snomed

3 NIB document ‘Personalised Health and Care 2020: A Framework for Action’:
https://www.gov.uk/government/publications/personalised-health-and-care-2020

4 IHTSDO browser: http://browser.ihtsdotools.org

5 Retirement of Read Version 2 and Clinical Terms Version 3: http://systems.hscic.gov.uk/data/uktc/readcodes

6 NCBO BioPortal Read Codes (CTV3) Xa01F Chronic fatigue syndrome

7 Forward-ME Correspondence re SNOMED added June 2015

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

Post #324 Shortlink: http://wp.me/pKrrB-46A

Update at February 23, 2016: Since no proposals and rationales for the ICD-10 G93.3 legacy terms were released in September or December 2015, I contacted ICD’s Dr Robert Jakob, again. Dr Jakob told me on February 2, 2016 that “[ICD-11 Revsion is] still working on the extensive review and the conclusions.”

This report is an update to Post #322:

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

Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

In ICD-10, the (G93.3) Title term is Postviral fatigue syndrome; Benign myalgic encephalomyelitis is the Inclusion term under G93.3; Chronic fatigue syndrome is included in the Index only, and indexed to the G93.3 code [1].

By 2012, the public version of the ICD-11 Beta draft had the three terms listed as in the screenshot, below – still under the Diseases of the nervous system chapter, but with a change of relationship between the three terms.

At that point, Chronic fatigue syndrome was being proposed as a new ICD Title term; Benign myalgic encephalomyelitis* was specified as the Inclusion term (indicated in the draft by hover text over the asterisk which is not displaying in this screenshot).

Postviral fatigue syndrome, previously designated as Title code in ICD-10, was now located under Synonyms, in a list of alternative and historical terms imported from other terminology systems and health informatics sources, including two terms specific to Chapter 18: Symptoms, signs etc. of the U.S. ICD-10-CM clinical modification [4].

Beta12

Source: ICD-11 Beta drafting platform, public version, July 25, 2012.

 

In early 2013, ICD Revision removed the entry for Chronic fatigue syndrome and its associated terms from the public version of the Beta draft; from that point on, none of the terms were accessible in any Linearization.

(In the version of the Beta that the public sees, there are no holding pens viewable for categories “Needing a decision to be made” and no tab for “Category Notes and Decisions” which might indicate the rationale for the temporary or permanent absence of a category from the draft.)

Although a Change History function was incorporated into the public Beta in March, no Change History is available for these terms. The Topic Advisory Group (TAG) for Neurology has published no progress reports on emerging proposals for scrutiny and discussion.

So for over 2 years, now, stakeholders have been unable to monitor evolving proposals for the classification of these G93.3 legacy entities within ICD-11. The continued absence of these terms hinders submission of comments and suggestions on proposed chapter location(s), parent classes, hierarchies, inclusions, exclusions, definitions or other Content Model descriptive text.

 

Request for release of information on current status of proposals

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 [5]. Read letter here

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.

NB: It was not the purpose of this discussion to advance my own views on how these terms should be represented within ICD-11 but to elicit clarifications on the current status of proposals.

 

Summary of main points from our discussion:

TAG Neurology retains responsibility for these three terms.

None of the sub-working groups that sit under TAG Neurology has specific responsibility for these terms.

TAG Neurology is still reviewing the literature and has yet to reach consensus about where to classify these terms within ICD-11.

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.

JakobJune155

The ICD-11 principle of multiple parenting was discussed in general terms: multiple parenting allows the same disease to be expressed in two (or more) places in the ICD-11 linearizations. A disease or disorder category will be located under a primary parent class within one chapter but may also be searchable under a secondary (or tertiary) parent within another chapter, whilst retaining the code assigned in the primary location. (See ICD-11 Multiple parenting Slides 42-48)

Because TAG Neurology is still working towards consensus, Dr Jakob would not be drawn on the following:

whether relocating one or more of these terms from the Diseases of the nervous system to an alternative chapter(s) was under consideration;

whether retaining one or more of these terms within the Diseases of the nervous system chapter but secondary parenting under an alternative chapter(s) was under consideration;

what existing parent classes were being considered for locating these terms under;

whether the creation of any new parent classes was being considered for these terms;

whether any changes in the relationship between the three terms, as they had stood in the Beta draft in early 2013, have already been agreed or remain under consideration (ie any changes to which of the terms are identified as ICD Title terms, which are specified as Inclusion terms and which are listed as Synonyms).

which of the terms are proposed to be assigned a Definition and other Content Model descriptive text and where definition(s) would be sourced from.

It remains unclarified, therefore, whether ICD-11 intends to define CFS discretely from BME. Also unclarified: whether exclusions for these terms are proposed to be inserted under categories such as Bodily distress disorder; Fatigue [previously Malaise and fatigue in ICD-10]; and a proposed new Diseases of the nervous system parent term, Functional clinical forms of the nervous system (a proposal that TAG Mental Health opposes).

I have already submitted requests via the Proposal Mechanism that PVFS, BME and CFS are inserted under Exclusions to Bodily distress disorder, and Fatigue.

 

With regard to a date by which we might anticipate proposals being released:

The Beta draft was frozen on May 31, 2015. The Beta Comment facility is open and stakeholders can register to comment on the draft or submit formal proposals for changes and enhancements to proposals via the Proposals Mechanism. Another frozen release is expected in August. (But while TAG Neurology’s proposals remain absent from the Beta and unpublished elsewhere, stakeholders are in no position to comment on the TAG proposals or submit suggestions for modifications to TAG proposals.)

Dr Jakob says that in September 2015, 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, and documents relating to the abridged Primary Care version of ICD-11.

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 2015.

The target date for presentation of ICD-11 for World Health Assembly (WHA) approval is currently proposed for May 2018. There would be a period for public review and comment prior to presentation for adoption.

I will update on the status of proposals for these terms as soon as further information becomes available.

It is regrettable that stakeholders are little better informed than they were two years ago.

 

Bodily stress syndrome (S3DWG); Bodily stress syndrome (PCCG)

My longstanding concerns regarding the proposals of the WHO Working Group on Somatic Distress and Dissociative Disorders (S3DWG) for the revision of the ICD-10 Somatoform disorders and the alternative proposals of the ICD-11 Primary Care Consultation Group (PCCG) were beyond the scope of my letter to Dr Üstün and my discussions with Dr Jakob in response to that letter.

However, I advised Dr Jakob that my concerns around proposals for the S3DWG’s “Bodily distress disorder” and the Primary Care Consultation Group’s “Bodily stress syndrome” have been discussed with ICD Revision’s, Dr Geoffrey Reed, and in formal submissions via the Proposals Mechanism and Beta Comment facility for the consideration of TAG Mental Health [6][7].

 

References and related posts

1 ICD-10 Version: 2015 Chapter VI Diseases of the nervous system, G93.3

2 ICD-11 Beta drafting platform (Public version)

Frozen release at May 31, 2015

3 ICD-11 Beta Proposal Mechanism (Registration required for access)

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2, Dx Revision Watch

5 Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel, Dx Revision Watch

6 Personal correspondence; ICD-11 Beta Proposal Mechanism.

7 Comment submitted to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder, Suzy Chapman

 

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

Post #322 Shortlink: http://wp.me/pKrrB-45z

Update: June 12, 2015: This situation is now being looked into by a member of the recently assembled ICD-11 Project Management team.

As previously posted:

Although the development process for ICD-11 has been in progress for eight years, it’s still not known how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms.

On June 8, I sent a letter, via email, to WHO/ICD Revision, requesting a prompt resolution to this situation:

For the attention of Bedirhan Üstün (WHO/ICD Revision Coordinator, Project Management Team)

CC:

Dr Margaret Chan (Director-General, WHO)
Robert Jakob (Medical Officer, WHO ICD classifications)
Christopher Chute (Chair, ICD-11 Revision Steering Group)
Tarun Dua (lead WHO Secretariat for Topic Advisory Group for Neurology)
Raad Shakir (Chair, Topic Advisory Group for Neurology)
Marjorie S. Greenberg (ex-officio NCHS, WHO-FIC, ICD-11 Revision Steering Group member, team member external assessors for ICD revision process)
Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager)
J Ties Boerma (ICD Revision Project Management team)
Ségolène Aymé (founder Orphanet, chair of ICD-11 Topic Advisory Group for Rare Diseases)
Stefanie Weber (DIMDI German Institute of Medical Documentation and Information, WHO-FIC)


Re: Continued absence of the ICD-10 G93.3 legacy entities from the public version of the Beta drafting platform


Monday, June 8, 2015

Dear Dr Üstün,

At the end of May, a frozen release was posted for the ICD-11 Beta draft.

I remain extremely concerned that there are still no entries in the public Beta, within any linearization, for the three ICD-10 G93.3 legacy entities:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

As you are aware, these three entities (plus a dozen or so synonym terms) were removed without explanation from the Diseases of the nervous system chapter of the public version of the Beta draft, in early 2013.

Consequently, for over 2 years, stakeholders throughout the world have been unable to view evolving proposals for the classification of these entities within ICD-11 or to scrutinise proposed chapter location, proposed hierarchies, proposed Definitions and other Content Model parameters.

It is very difficult to monitor, make comments or suggestions where terms are not represented within the draft.

A request submitted by me, in February, via the Proposal Mechanism, to restore these entities to the public Beta has produced no response.

While these three entities remain absent from the Beta draft, stakeholders are effectively disenfranchised from participating in the revision process.

Since the start of the revision process, in 2007, no progress reports, editorials or journal papers have been published on behalf of TAG Neurology discussing the work group’s deliberations for these specific entities.

Since early 2013, when the three entities were removed from the public Beta, there has been no information available, at all.

I am aware that in March 2014, enquiries had been made by English and Scottish Health Directorates and that WHO was jointly approached by several UK registered ME/CFS patient organizations and English parliamentarians. The WHO’s response, at that point, was that proposals for the classification of these terms was unresolved and that more time and more input from the work groups was required [1].

A year later, the need for clarification for current proposals remains unmet.

Given the level of concern amongst stakeholders, globally, would you please look into this matter?

Could you please expedite the restoring of these terms to the Beta draft, with a Change History, in order that the ICD-11 development process can be inclusive of the thousands of clinicians, researchers, allied health professionals, advocacy organizations and patients with a stakeholder interest in the classification of these terms.

If it is not possible to restore terms to the Beta while a freeze is in operation, could TAG Neurology be instructed to issue an immediate statement of intention for these terms, in the interim?

Many thanks in anticipation of a swift resolution.

Sincerely,

Suzy Chapman

1 Correspondence, Scottish Health Directorate and WHO, March 2014, obtained under FOI.

Background to this letter:

In ICD-10 Version 2015:

Postviral fatigue syndrome is coded in Chapter VI: Diseases of the nervous system (the Neurology chapter), at code G93.3, under parent class G93 Other disorders of brain (view here).

Benign myalgic encephalomyelitis is the inclusion term to Postviral fatigue syndrome and assigned the G93.3 code.

Chronic fatigue syndrome is not included in ICD-10 Volume 1: The Tabular List but is indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index.

(The orange symbol denotes an Index term)

ICD102015

Proposals for ICD-11

In May 2010, a change to the hierarchical relationship between the three terms had been proposed. Whereas Postviral fatigue syndrome had been the Title category term for ICD-10, Chronic fatigue syndrome was proposed as the Title category term for ICD-11.

As part of a substantive reorganization of the Neurology chapter, the parent class, G93 Other disorders of brain (under which the ICD-10 categories G93.0 thru G93.9 were located), is proposed to be retired for ICD-11.

This has meant that the terms that sat under the G93 parent class for ICD-10 would need to be relocated under alternative parent classes for ICD-11 or have new parent classes created for them.

In July 2012, the public version of the ICD-11 Beta drafting platform had stood as in my screenshot, below.

It’s not evident in my screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome.

Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.

At this point, around 14 historical or alternative terms were listed under Synonyms. These additional uncoded for terms, which had included the ICD-10-CM R53.82 terms, chronic fatigue, unspecified and chronic fatigue syndrome nos, had been scraped from other classification and EMR systems as part of the Beta drafting process :

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

In November 2012, ICD Revision inserted a scrappy Definition for Chronic fatigue syndrome (this replaced an earlier draft ICD-11 Beta Definition). I have sourced this draft Definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

The “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But Title term, Chronic fatigue syndrome, its Inclusion term and its list of Synonyms were not restored to any chapter.

Since February 2013, no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, either as uniquely coded for ICD Title terms, or as Inclusion terms or as Synonyms to Title terms, or listed in the ICD-11 Beta Index.

So currently, there is no information within the Beta draft for proposals for these three terms.

The public version of the Beta drafting platform displays no editing “Change History” or “Category Notes” for these terms and their continued absence from the draft is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category, given that ICD Revision is promoted by WHO’s, Bedirhan Üstün, as an open and transparent process that is inclusive of all classes of stakeholder. The recent external review of the revision process has called for greater transparency [1].

Since June 2013, my repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

It is understood that Annette Brooke MP also received a response, in July 2014, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory [2].

What clarifications have been given?

WHO and ICD Revision’s, Dr Geoffrey Reed (Senior Project Officer, Revision of Mental and behavioural disorders), have said that there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

Dr Reed has said that the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he has said that he would be unable to request that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily distress disorder) until the conditions that are being excluded exist in the classification; that at such time, he would be happy to do so.

In August 2014, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated, but I did receive information regarding the former.

Extract from FOI Response: September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA),

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017**. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

**Rescheduled in May, this year; the proposed target for presentation for WHA approval is currently May 2018.

This is all that has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 8 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

There remain 6 important questions to be answered by WHO/ICD Revision:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded for Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

References and related posts

1 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

2 Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

3 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

5 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

6 Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome

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