Update on NHS Digital’s request for addition of SEID to SNOMED CT terminology system

August 1, 2020 by

Post #359 Shortlink: https://wp.me/pKrrB-58W

Update on NHS Digital’s request for addition of Systemic exertion intolerance disease (SEID) to SNOMED CT terminology system

In February 2015, a panel convened by the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on ME, CFS called “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.”[1]

The panel undertook an evidence review and formulated recommendations which had included proposals for new diagnostic criteria and the suggestion of the name “Systemic exertion intolerance disease (SEID)”, as part of a number of recommendations put forward for review and consideration by the Report’s sponsor agencies.

Five years on:

  • The CDC has not adopted the term “Systemic exertion intolerance disease (SEID)”. In preference, the CDC uses “ME/CFS” on its website clinical information pages and for its Continuing Medical Education (CME) activities.
  • The NCHS-CDC have not added the SEID term to ICD-10-CM, an adaptation of the WHO’s ICD-10, that is mandatory in the US for assigning diagnostic codes for medical billing and reimbursement.
  • The SEID term has not been added to the final update of the WHO’s international edition of ICD-10 (Version: 2019).
  • The SEID term has not been added to the SNOMED CT US Edition by its managers, the National Library of Medicine (NML), either as a new Concept code, or as a Synonym or Child term.
  • The IOM panel’s Report formed part of the literature review for the revision of the ICD-10 G93.3 legacy categories. The WHO and the ICD-11 CSAC and MSAC committees have not included the SEID term in ICD-11.
  • The IOM panel’s suggested case definition has not been subject to field testing by, or on behalf of the CDC. Several studies published since the Report’s release concluded that the proposed SEID case definition lacks reliability and specificity; discussed the unintended consequences of not specifying exclusionary illnesses; and noted the lack of acceptability to patients of the proposed case definition and proposed SEID nomenclature.

A couple of minutes on Google demonstrates that some websites providing clinical information to physicians, healthcare professionals and patients are referring to “Systemic exertion intolerance disease” as though the term had been tested, evaluated and adopted by US federal agencies — when this is not the case.

In the March 2020 issue of the ME Global Chronicle, I reported on a request submitted by NHS Digital in November 2019 for addition of the “Systemic exertion intolerance disease (SEID)” term to the SNOMED CT terminology system.

SNOMED CT is used in over 30 countries and is the recommended terminology system in the UK, US, Canada, New Zealand and Australia [2].

For NHS England, SNOMED CT UK Edition is the mandatory terminology system across all primary and secondary healthcare settings. The system is used by clinicians in electronic medical records (EMRs), at the point of care, to record findings, symptoms, diagnoses, interventions, procedures etc.

The UK Edition of SNOMED CT terminology system is managed by NHS Digital [3].

Authorized users can register to submit requests for changes or additions to the terminology system via an NHS Digital submission portal. Requests that meet criteria for potential addition to the SNOMED CT International Edition are referred on for consideration by SNOMED International’s terminology specialists.

Submission #30104 (November 30, 2019) requested addition of the term “Systemic exertion  intolerance disease” as a Synonym under the existing SNOMED CT Concept: 52702003 Chronic fatigue syndrome [4].

The request appeared to originate from within the NHS (or other authorized SNOMED CT user) as no other class of stakeholder is referenced as the original requester.

The rationale text in support of request #30104 can be read on the NHS Digital Request Submission Portal, here: http://bit.ly/39Pz4vy

After drawing attention to this request on Twitter, I was contacted in March by a senior member of SNOMED International’s team.

I was advised that request #30104 had been submitted for consideration for addition to the SNOMED CT International Edition; that the request had already been processed and pending any further changes, would be implemented in the International Edition’s July release.

(Note: If the term “Systemic exertion intolerance disease (SEID)” was approved for addition to the July 2020 International Edition, the term would then be absorbed into the various national editions when they released their next updates.)

As the IOM panel’s proposed case definition and suggested term have not undergone field testing and evaluation; as the SEID term has not been adopted by US federal agencies; and as NCHS-CDC has made no decision to assign a code for SEID in the US ICD-10-CM for medical billing and reimbursement, it would be premature to approve a request for addition to the SNOMED CT International Edition.

These concerns for the potential addition of an untested, unadopted term to the SNOMED CT system were passed back to SNOMED International’s terminology specialists for their consideration.

In early June, I was informed that the terminology team had reviewed the information provided and concluded that adding “Systemic exertion intolerance disease” as a synonym is premature; that approval of this request had been retracted and SEID would not be included in the July release.

This was further confirmed on a SNOMED CT internal production page (see last entry under heading: “Concepts to be removed completely from the Alpha release content”): https://bit.ly/2Xed60V

The July 2020 release of the International Edition was published on July 31: https://bit.ly/39HA1a2

I can confirm that the two Synonyms terms that had been added under 52702003 Chronic fatigue syndrome for the Alpha production release:

● 3902795018 – SEID – systemic exertion intolerance disease
● 3902796017 – Systemic exertion intolerance disease

have been removed for the finalised July 2020 release*.

*In the event of a request for a change or addition to SNOMED CT not being accepted there is a formal appeals process and the submitter may request a further review of the decision. SNOMED International has confirmed that NHS Digital has not appealed against the decision not to add SEID to the finalised July 2020 release.

An abridged version of this post can be downloaded in PDF format here: https://bit.ly/2XeeS2e

References:

1 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); Feb 2015. https://www.ncbi.nlm.nih.gov/pubmed/25695122

2 SNOMED CT International Edition browser and browsers for 14 national editions: https://browser.ihtsdotools.org/

3 NHS Digital SNOMED CT browser: http://bit.ly/38OqL1R

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

About SNOMED CT:

Clinical classifications like ICD-10 and the SNOMED CT terminology system are complementary and serve different purposes. ICD-10 is used after the event by clinicians and coders and focuses on diagnostic coding and data recording for statistical and epidemiological analysis, reimbursement and  resource allocation.

SNOMED CT is used by clinicians in electronic medical records (EMRs), at the point of care, to record findings, symptoms, diagnoses, interventions, procedures etc.

Each clinical concept or phrase is assigned a unique SCTID code to provide a standardised, machine readable terminology for recording and sharing clinical information across multiple health care settings. SCTID codes are mapped to ICD-10 and to ICPC-2e codes for interoperability.

SNOMED CT is considered to be the most comprehensive, multilingual healthcare terminology in the world. It is used in over 30 countries and is the recommended terminology system in the UK, US, Canada, New Zealand and Australia.

SNOMED CT International Edition releases two updates a year. A number of countries maintain national editions which automatically incorporate the updated content from the core SNOMED CT International releases but may also include country specific terminology. The national editions release twice yearly updates on a staggered schedule and their current content may not reflect the changes and additions to the most recent release of the International Edition.

SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available in response to requests from stakeholders and in accordance with its editorial and content development principles [1].

Since April 2018, SNOMED CT UK Edition [2] has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology system which is now retired. SNOMED CT UK Edition was scheduled for adoption across all clinical, secondary care and mental health settings from April 2020.

Browsers for the SNOMED CT International Edition and the national editions for Australia, Belgium, Canada, Denmark, Netherlands, Sweden, US and a number of other countries can be accessed here:

SNOMED International SNOMED CT Browser: http://browser.ihtsdotools.org/

1 SNOMED CT International Release Content Development:
https://confluence.ihtsdotools.org/display/DOCSTART/9.+Content+Development

2 The SNOMED CT UK Edition is managed by NHS Digital, as the designated UK National Release Centre. A public browser can be accessed here: https://termbrowser.nhs.uk/

Filed under CFS, Chronic fatigue syndrome, ICD-10, Institute of Medicine (IOM), Myalgic Encephalomyelitis (ME), NHS, NHS Digital, SNOMED CT, Snomed International, Systemic exertion intolerance disease (SEID), Terminology systems Tagged with , , , , , , , , ,

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

May 2, 2019 by

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

Filed under CFS, Chronic fatigue syndrome, Diagnostic classification, Dr Robert Jakob, ICD-11, ICD-11 implementation, International Classification of Diseases, Myalgic Encephalomyelitis (ME), WHO (World Health Organization), World Health Assembly Tagged with , , , , , , , , ,

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

April 30, 2019 by

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 Committee (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

Filed under Bodily distress disorder, CFS, Chronic fatigue syndrome, Disorder of the nervous system, ICD-11 implementation, International Classification of Diseases, Myalgic Encephalomyelitis (ME), Postviral fatigue syndrome, WHO (World Health Organization), World Health Assembly Tagged with , , , , , , , , ,

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

March 8, 2019 by

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:

A Selection of points the Barts CF Service made during the NICE Guidelines for CFS / ME: Tom Kindlon

 

Filed under CFS, CFS ME, Chronic fatigue syndrome, Myalgic Encephalomyelitis (ME), NICE CG53 CFS/ME, NICE Guideline, Professor Peter White Tagged with , , , , , , , , ,

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Three: WHO rejects Dr Dua’s proposal

November 22, 2018 by

Post #346 Shortlink: https://wp.me/pKrrB-4wZ

Related posts:

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two

 

Part Three (and it’s good news, for once)

As reported in Parts One and Two, three proposals for the ICD-10 G93.3 legacy categories, Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome have sat unprocessed in the ICD-11 Proposal Mechanism for over a year:

the proposal by Dimmock & Chapman (submitted March 26, 2017);

the proposal by Dr Lily Chu on behalf of the IACFS/ME (submitted March 31, 2017);

the proposal by Dr Tarun Dua (submitted November 06, 2017).

If you are not registered for access to the ICD-11 Proposal platform, click to download the proposal submitted by Dimmock & Chapman in PDF format.

 

Dr Tarun Dua’s proposal to kick the G93.3 legacy categories out of the Neurology chapter

Dr Tarun Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse. This WHO department has responsibility for both mental disorders and neurological diseases and disorders. Its Director is Dr Shekhar Saxena.

Dr Dua had acted as lead WHO Secretariat and Managing Editor for ICD Revision’s Topic Advisory Group (TAG) for Neurology, which was chaired by Prof Raad Shakir.

When Dr Dua submitted a proposal, last year, recommending that “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] should be removed from the Diseases of the nervous system chapter and reclassified in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system, it was initially unstated whose position this controversial recommendation represented.

Read Dr Dua’s proposal in PDF format from Page 5 of this November 2017 commentary.

TAG Neurology had ceased operations in October 2016, leaving proposals for the G93.3 legacy categories hanging and the terms still unaccounted for in the public version of the ICD-11 Beta draft. The terms were eventually restored to the draft in March 2017.

Since early 2017, we had been advised several times by senior WHO officers that decisions regarding these categories were “on hold” while an in-house evidence review was being undertaken.

Moreover, WHO senior classification expert, Dr Robert Jakob, had assured me (via email in March 2017) that WHO had no intention of dumping these categories in the Symptoms, signs chapter — yet here was Dr Dua calling for precisely that.

The key question being: Did this recommendation represent the outcome of a now concluded evidence review or did it represented only the position of Dr Dua?

Dr Dua eventually stated that “…the proposal [had] been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.” But neither Dr Dua nor her line manager, Dr Saxena, were willing to provide us with responses to other queries raised in relation to this proposal, including, crucially: How does this proposal relate to the in-house evidence review?

We were subsequently advised by WHO’s Dr John Grove (Director, Department of Information, Evidence and Research) that the systematic evidence review would determine if the terms needed to be moved to any other specific chapter of ICD-11 and that the outcomes would be provided for review by the Medical Scientific Advisory Committee (MSAC).

A formal response by Dimmock & Chapman to Dr Dua’s proposal can be read in PDF format here Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017.

 

WHO rejects Dr Dua’s proposal 

On November 19, the proposal was marked as Rejected by ICD-11 Proposal Mechanism admins:

Screenshot: Accessed November 20, 2018:

https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/569175314

This decision to reject Dr Dua’s recommendation that the terms should be relocated under the Symptoms, signs chapter is accompanied by a brief rationale from ICD-11 Proposal Platform admins “Team3 WHO”:

Screenshot: Accessed November 22, 2018:

 

Importantly, the decision to retain the terms in the Disorders of the nervous system chapter is supported by the WHO MSAC and CSAC committees.

(See Reference 10 for WHO/ICD-11’s guiding principles for consideration of legacy terms and potential chapter relocations — guidance with which Dr Dua is familiar and has cited, herself, when drafting other proposals, but which she evidently chose to disregard in the case of the G93.3 legacy categories.)

 

This means that these ICD-10 legacy terms continue to stand as per the “Implementation” version of the ICD-11 MMS that was published in June 2018:

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314

 

But we are not done yet…

It’s not known when the remaining proposals submitted by myself and jointly with Mary Dimmock will be processed.

There remains a backlog of over 1000 unprocessed proposals, a number of which had met the March 30, 2017 proposal deadline and were expected to have been processed last year, in time for consideration for inclusion in the June 2018 “Implementation” release.

According to summary reports of the WHO-FIC Network Council’s April 26 and September 26, 2018 teleconferences:

  • Between June 2018 and the 2019 [World Health Assembly] resolution, WHO will work to improve user guidance around the classification and any final sorting of the extension codes, but there is not an intention to “reopen the package” of ICD-11 or to make major changes
  • The codes will not change after June 2018, and the URIs [Unique Reference Identifiers] will remain the constant, immoveable identifiers for each concept that underpin the classification
  • An update cycle was agreed by JTF [Joint Task Force] last week, including ongoing update of foundation entities (e.g. index terms, synonyms, extension codes, etc.) with
    • annual updates for entities below the shoreline,
    • a 5-year cycle for update of entities above the shoreline, and
    • a 10-year cycles for updates to the rules.

and from the September 26, 2018 teleconference:

  • WHO has updated the proposal platform to allow voting by CSAC* members and to align the process with the historical practices of the URC [ICD-10 Update and Revision Committee].
  • 90 proposals have been identified from the platform for consideration by the CSAC this year, though not all of them can be reviewed in detail face-to-face during the WHO-FIC Network Annual Meeting 2018. A call may be held in advance to discuss some specific priorities.
  • Given the huge volume of proposals, the meeting will go through the new procedures for the CSAC, review the voting process and tools, overview the proposal platform and how to use it, and determine timelines and workload for after the meeting.
  • CSAC governance will also be presented together with the content of ICD-11 prior to submission of the report on ICD-11 to the WHO Governing Bodies for review by the WHO Executive Board [in January 2019]

Source: WHO-FIC Council Google platform: WHO-FIC Council Teleconferences

*The Classifications and Statistics Advisory Committee (CSAC) takes over the role of the ICD-10 Update and Revision Committee (URC). The last update for ICD-10 will be 2019.

 

The ICD-11 MMS is expected to be frozen again in January 2019 in preparation for submission of the report to the Executive Board (EB):

 

Beyond World Health Assembly adoption, ICD-11 will be subject to an update and maintenance cycle:

(See Reference Guide Annex 3.7.1 – 3.7.6 for detailed information on ICD-11 Updating Cycles and Proposal Workflows.)

I’ve been unable to confirm whether the first update released after the June 2018 “Implementation” version would be a January 2019 release, or whether the June 2018 version is intended to remain more or less stable for a further year, until January 2020.

If WHO were to accept any of the proposals contained within my individual submissions and my joint submissions with Mary Dimmock, for example, approving our recommendations for deprecating the prefix “Benign”; deprecating Postviral fatigue syndrome as lead Concept Title; assigning separate Concept Title codes to Myalgic encephalomyelitis and to Chronic fatigue syndrome; or approving Exclusions under Bodily distress disorder (BDD), any approved recommendations would appear initially in the orange ICD-11 Maintenance Platform pending their eventual incorporation into an “Implementation” release.

I will keep you apprised of any significant developments.

 

References:

1 G93.3 Postviral fatigue syndrome, ICD-10 Browser Version: 2016. Accessed November 22, 2018

2 World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11) Dx Revision Watch, July 25, 2018

3 8E49 Postviral fatigue syndrome, ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version for preparing implementation. Accessed November 22, 2018

4 8E49 Postviral fatigue syndrome, ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform. Accessed November 22, 2018 The content made available on this platform is not a released version of the ICD-11. It is a work in progress in between released versions.

5 A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two. Dx Revision Watch, April 3, 2017

6 PDF: Proposal: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017

7 Proposal: Revision of G93.3 legacy terms for ICD-11, Dr Tarun Dua, November 6, 2017

8 Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

9 ICD-11 Reference Guide June 2018

10 Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 2018

Filed under CFS, Chronic fatigue syndrome, ICD revision process, ICD-10, ICD-11, ICD-11 MMS 2018, International Classification of Diseases, Myalgic encephalomyelitis, Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two

August 17, 2018 by

Post #344 Shortlink: https://wp.me/pKrrB-4rs

Part Two

In Part One, I documented key developments around the potential revision of the G93.3 legacy categories for ICD-11. This report picks up from November 2017.

November 06, 2017: Dr Tarun Dua (Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse) posts a new proposal for these terms on the ICD-11 proposal platform.

The proposal recommends moving “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] from the Diseases of the nervous system chapter to the Symptoms, signs chapter, as a child under Symptoms, signs or clinical findings of the musculoskeletal system.

Click here to read the full proposal Dr Dua November 06, 2017. (If you are not registered with the drafting platform, a copy of Dr Dua’s proposal is included at the end of this commentary.)

November 2017: Dr Dua and Dr Shekhar Saxena are approached by the Countess of Mar to provide clarifications. Dr Dua responds that “the proposal has been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.” but provides no other clarifications. Dr Saxena does not engage but passes the communication on to Dr Dua, who says she has forwarded the message to the TAG for its consideration. Nothing further is heard from any of them and the enquiries are left hanging.

January 29, 2018: “Team WHO” (an ICD Revision Admin account) posts this comment under the Dr Dua proposal:

“Any decisions regarding this entity are on hold until the results of a review become available.”

February 15, 2018: Dimmock and Chapman submit a robust counter analysis of Dr Dua’s proposal and submit further evidence on March 10.

December 2017 – March 2018: In response to the failure of WHO’s Dr Shekhar Saxena and Dr Tarun Dua to provide adequate clarifications in relation to this proposal, the Countess of Mar is advised to write to Dr John Grove, Director, Information, Evidence and Research and Revision Project Lead to put on record significant concerns for the way in which the potential revision of these ICD categories has been handled, the lack of transparency on the part of TAG Neurology, Revision Steering Group and Joint Task Force, and their unwillingness to engage in dialogue.

Over a number of exchanges, Dr Grove provides the following information:

A systematic evidence review will determine if “the category” needs to be moved to any other specific chapter of ICD-11.

The classification team organizes the review which is expected to be completed by mid April 2018.

The outcomes will be provided for review by the Medical Scientific Advisory Committee (MSAC) and will be posted together with the relevant detail on the proposal platform.

New proposals posted on the platform will become part of the workflows of the maintenance mechanism of ICD-11 and be processed in an annual cycle.

The “relevant category will in any case be kept separate from the generic ‘chronic fatigue’ (signs and symptoms).”*

 

*NB: there is no concept term, ‘chronic fatigue’ in ICD-11’s Symptoms, signs chapter. There is a concept term: Fatigue (which was Malaise and fatigue in ICD-10). In March 2017, a long-standing proposal of mine for the addition of exclusions for Benign myalgic encephalomyelitis and Chronic fatigue syndrome under Fatigue was approved by the Beta draft admins, although the request for exclusion of Postviral fatigue syndrome wasn’t actioned and remains unprocessed.

There are several speculative reasons for this: ICD Revision may be considering retiring the Postviral fatigue syndrome term for ICD-11; or retaining the term, but only as an Index Term. This might also account for Dr Dua’s reluctance to clarify what her proposal’s intentions are for the Postviral fatigue syndrome term.

There has been no indication whether any evidence review was concluded in mid April, what the outcome was, or whether any potential new proposals for these categories are currently with the MSAC. But no new proposals from ICD Revision, the MSAC or Dr Dua’s department have been posted on the proposal platform or entered directly into the development draft (now known as the “Maintenance Platform”).

Where does this currently leave these terms?

This is how the ICD-11 MMS stood for the release of the “advance preview” version, on June 18, 2018.

(Note the version of ICD-11 as released does not display the Foundation Component, nor are the current 15 Synonyms and Index terms displayed in this “advance preview” release):

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314

 

As released in June 2018, the content of the ICD-11 MMS is planned to remain stable until January 2019, when it will be prepared for presentation at the May 2019 World Health Assembly.

The Proposal Mechanism will remain open for submission of new proposals from the MSAC, CSAC and public stakeholders. There is a backlog of over 1300 proposals waiting to be processed.

There are currently three proposals for PVFS, BME and CFS waiting to be reviewed:

The proposal submitted by Dimmock & Chapman (on March 26, 2017)

The proposal submitted by Dr Lily Chu on behalf of the IACFS/ME (on March 31, 2017)

The proposal submitted by Dr Tarun Dua (on November 06, 2017)

 

ICD Revision might potentially post new proposals for PVFS, ME and CFS via the Proposal Mechanism at any point in the future.

While new proposals are expected to be processed as part of the annual maintenance cycle, any approved proposal would not immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change. (See Annex 3.7 of the Reference Guide for maintenance and update schedules, how “Minor” and “Major” changes are defined, guidance on submitting new proposals etc.)

My interpretation of the Reference Guide is that relocation of a category to another chapter would constitute a “Change a primary parent” and a “Structural Change” and would be classed as a “Major Change”, for incorporation on the 5 year update cycle, not the annual update cycle.

It is not yet clear in which year the first update cycle is anticipated to start, i.e., whether the next stable release would be published in January 2020, or if the first update cycle is not scheduled to start until a later year.

 

How soon will member states start using ICD-11?

World Health Assembly endorsement will not come into effect until January 01, 2022. After this date, member states can start using ICD-11 for reporting data when their health systems have transitioned to the new edition.

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require at least five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation — particularly the United States.

There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace. Global adoption will likely be a patchy and prolonged process and for a period of time, the WHO will be accepting data reported using both ICD-10 and the new ICD-11 code sets.

No countries have announced tentative implementation schedules.

NHS Digital says: “No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision.”

Until the UK has implemented ICD-11, the mandatory classification and terminology systems for use in the NHS are ICD-10 (Version: 2015) and SNOMED CT UK Edition.

Part One

 

References:

1 G93.3 Postviral fatigue syndrome, ICD-10 Browser Version: 2016. Accessed August 14, 2018

2 World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11) Dx Revision Watch, July 25, 2018

3 8E49 Postviral fatigue syndrome, ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version for preparing implementation. Accessed August 14, 2018

4 8E49 Postviral fatigue syndrome, ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform. Accessed August 14, 2018 The content made available here is not a released version of the ICD-11. It is a work in progress in between released versions.

5 ICD Revision Joint Task Force Meeting Report 22-22 January, 2017, Cologne, Germany. Page 39, Item 39: Chronic Fatigue Syndrome Advocacy Efforts. Accessed August 14, 2018

6 A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two. Dx Revision Watch, April 3, 2017

PDF: Proposal: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017

7 Proposal: Revision of G93.3 legacy terms for ICD-11, Dr Tarun Dua, November 6, 2017

8 Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

9 ICD-11 Reference Guide June 2018

10 Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 2018

Filed under CFS, Chronic fatigue syndrome, ICD revision process, ICD-10, ICD-11, ICD-11 Beta Draft, International Classification of Diseases, Myalgic encephalomyelitis, Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

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