A round up of updates on ICD-11

Post #360 Shortlink: https://wp.me/pKrrB-59G

1. Next release of the ICD-11 MMS (the blue “Version for preparing implementation” platform)

It was anticipated that the ICD-11 Blue platform would continue to be updated annually to incorporate all the changes approved and implemented in the Orange Maintenance platform since the last update was released.

There has been no new release of the Blue platform since April 2019.

So, for example, the exclusions for 8E49 PVFS; BME; and CFS under 6C20 Bodily distress disorder, which were approved and implemented in the Orange Maintenance platform in January, this year, don’t yet display under the exclusions list for 6C20 Bodily distress disorder in the Blue platform.

A couple of weeks ago, I contacted the WHO’s Dr John Grove to enquire when the next update of the Blue platform was anticipated to be published.

I also asked when the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders is expected to be finalised and released.

Yesterday, I received a response from the WHO’s Dr Robert Jakob who advised that the 2020 release of the ICD-11 Blue platform will be posted in a few weeks.

 

2. Proposal for deprecation of the prefix “Benign” from “Benign myalgic encephalomyelitis”

In February, I submitted a new proposal for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis” citing, inter alia, the precedent of the removal of the “Benign” prefix for the final update of ICD-10 (Version: 2019).

My proposal and rationale can be read here in PDF format.

There remain hundreds of proposals waiting to be reviewed in the ICD-11 Proposal Mechanism and my proposal has not yet been processed. I am hoping it will be reviewed and accepted in time for inclusion in the ICD-11 MMS 2020 release.

 

3. Finalisation and publication of the CDDG

The Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders has been developed by the WHO Department of Mental Health and Substance Abuse. It is the equivalent of the ICD-10 “Blue Book”.

The descriptive texts in Chapter 06: Mental, behavioural or neurodevelopmental disorders in the core version of ICD-11 are intended for use by coders and clerical workers as a basis for statistical reporting.

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 and is intended for use by mental health professionals and for general clinical, educational and service use.

The draft texts for the CDDG have not been accessible to public stakeholders for review and comment, though clinicians have been able to register to review the draft and provide feedback throughout its development, via the Global Clinical Practice Network platform.

Last year, the WHO stated that the CDDG would be published “as soon as possible” after the May 2019 adoption of ICD-11 at the 72nd World Health Assembly.

I was advised, yesterday, by Dr Jakob, that the CDDG is still being amended based on feedback from the field and that the mental health team hasn’t provided a clear deadline [for its finalisation and release].

 

4. Publication of the ICD-11 PHC

There is no indication when the WHO expects to finalise and release the ICD-11 PHC — a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders.

The ICD-11 PHC is proposed to comprise 27 mental disorders and contains no general medical diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be mandatory for use by member states.

For the mandatory core ICD-11 classification, the WHO has gone forward with Bodily distress disorder (BDD), which is conceptually similar to DSM-5’s Somatic symptom disorder (SSD).

But for the ICD-11 PHC, a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS) is proposed to be included to replace ICD-10 PHC’s F45 Unexplained somatic complaints and F48 Neurasthenia categories.

See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions.

For more information on the ICD-11 PHC see this post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders

Slide presentation: MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care, Marianne Rosendal

The ICD-11 PHC has not been developed on a publicly accessible platform and the draft texts for the 27 mental disorders proposed to be included are not available for public stakeholder review and comment.

The “Bodily Stress Syndrome (BSS)” category, its proposed text and proposed criteria need stakeholder scrutiny.

If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs and criteria sets in play:

Somatic symptom disorder (DSM-5; under BDD Synonyms list in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily Stress Syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)

plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.

 

5. A revised version of my report “Update on classification and coding of PVFS, ME and CFS for ICD-11” (v4 August 2020) is available to download

The PDF can be downloaded here.

Thumbnail pages 1 and 4:

 

6. The ICD-11 codes are now frozen

On February 10, 2020, the WHO stated on the Proposals platform: “The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted.”

Changes that would not disrupt the structure of the code hierarchies, for example, additions to the Index, addition or deletion of Synonym terms or Exclusion terms, edits to category Description texts or correction of typos are permissible.

But proposals for major changes such as relocating an existing Concept Title to a different chapter (which would necessitate a code change) or moving a term under a different “primary parent” code within its current chapter could not be considered.

For further information on ICD-11 update schedules and what classes of changes are permitted see:

ICD-11 Reference Guide sections 3.8.1 to 2.8.7: 3.8 Annex: ICD-11 Updating and Maintenance

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

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

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.

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

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

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

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

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

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

Post #343 Shortlink: https://wp.me/pKrrB-4r3

Part One

In the World Health Organization’s ICD-10, Postviral fatigue syndrome is classified in the neurological chapter of the Tabular List (at G93.3, under parent block: G93 Other disorders of brain, in Chapter VI: Diseases of the nervous system).

Benign myalgic encephalomyelitis is the inclusion term under Postviral fatigue syndrome and takes the same code. Chronic fatigue syndrome isn’t included in the Tabular List but is indexed in the Alphabetical Index to the G93.3 code.

ICD-10 and ICD-11 do not include the composite terms: “myalgic encephalomyelitis/chronic fatigue syndrome”, “ME/CFS” or “CFS/ME” and composite terms will not be used in this report.

This is how the terms appear in the online browser version of the ICD-10 Tabular List. If you enter “Chronic fatigue syndrome” into the Search field, a drop down displays the code that Chronic fatigue syndrome is indexed to:

http://apps.who.int/classifications/icd10/browse/2016/en#/G93.3

 

Release of ICD-11

In Post #339 I reported on the release, in June 2018, of an “advance preview” version of ICD-11. This version has been released to enable countries to evaluate the new edition, plan for implementation, prepare translations and begin training health professionals. The WHO still has a lot of work to do before the full ICD-11 “implementation package” and companion publications are completed.

ICD-11 is scheduled for presentation at the World Health Assembly (WHA) in May 2019 for adoption by member states but WHA endorsement won’t come into effect until January 01, 2022. After that date, member states can begin using the new edition for data reporting — if their health systems are ready. There is no mandatory implementation date and member states will be migrating to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.

 

Update on classification for ICD-11

The progression of these three ICD-10 categories through the ICD-11 drafting process has been shambolic, mired in obfuscation, immensely frustrating for stakeholders — and still not resolved.

If you would prefer to jump to a report on how these three terms currently stand in ICD-11, as released in June 2018, and skip the key developments, go to Part Two

Key developments: tracking the progress of the ICD-10 G93.3 categories through the iCAT, Alpha and Beta drafting phases, between May 2010 and June 2018:

May 2010: The ICD-10 parent class, Other disorders of brain, is retired for ICD-11. Its retirement affects a number of categories that sit under it, not just Postviral fatigue syndrome.

A change of hierarchy between the three terms is proposed (Screenshot).

Chronic fatigue syndrome is proposed to replace Postviral fatigue syndrome as the new “Concept Title” term, with Benign myalgic encephalomyelitis specified as its inclusion term (Screenshot). Postviral fatigue syndrome is proposed to be relocated under Synonyms to new Concept Title, Chronic fatigue syndrome.

All three terms are later removed from under parent block: Other disorders of the nervous system and placed in a “holding pen” for categories for which decisions are needed to be made or while further chapter restructuring is being carried out.

February 2013: The Beta drafting platform admins or the managing editors for Topic Advisory Group for Neurology inexplicably remove CFS, BME and PVFS from the public version of the Beta platform. No rationale is provided for their removal. No comments or suggestions for edits can be submitted for these terms since the terms are no longer displaying in the draft. This is how proposals for the terms had stood in early 2013, at the point at which they were removed from the public draft (Screenshot).

July 2015: Following a teleconference with the WHO’s Dr Robert Jakob and Anneke Schmider, Chapman and Dimmock provide ICD Revision and Topic Advisory Group for Neurology with a list of neurological and immunological studies and other resources to inform the revision process and the literature review.

February 2017: The three terms have now been missing from the public version of the Beta drafting platform for over four years.

Advocates and international patient organizations lobby the co-chairs and members of the ICD Revision Joint Task Force to place the matter of the continued absence of these terms from the public Beta draft on the agenda for the Joint Task Force’s February 20-22, 2017 meeting, in Cologne.

These appeals do result in the matter being tabled for discussion, as noted in the Meeting Report (Item 39, p39). But no immediate action is taken to restore the missing terms to the Beta draft and no progress report on intentions for these terms is forthcoming.

March 26, 2017: PVFS, BME and CFS are finally restored to the Beta draft under Other disorders of the nervous system, but with this caveat from the Beta draft admin team:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD. Team WHO 2017-Mar-26 – 14:46 UTC

PVFS is restored as the lead (Concept Title) term, as it is in ICD-10. BME and CFS are both specified as Inclusion terms. There is a list of around 15 alternative and historical terms under Synonyms and Index Terms — but “the optimal place in the classification is still being identified.”

At this point, ICD-11 has been under development for nearly ten years but Topic Advisory Group for Neurology has yet to publish any progress reports on its proposals for these ICD-10 categories.

This is how the terms stood after they were restored to the Beta draft in March 2017:

 

March 27, 2017: Suzy Chapman and Mary Dimmock finalize and submit a detailed proposal and rationale for PVFS, BME and CFS via the Beta draft proposal platform. This submission meets the March 30, 2017 proposal deadline. The proposal and rationale is supported by international patient organizations and patients. Click to download a PDF of the Proposal and Rationale.

(This proposal remains unprocessed and uncommented on by ICD Revision despite having met the proposal deadline.)

November 06, 2017: A new proposal for these terms is posted by Dr Tarun Dua.

Dr Dua is Medical Officer, 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. Its Director is Dr Shekhar Saxena.

Dr Dua had acted as lead WHO secretariat and managing editor to the Topic Advisory Group for Neurology, which had been chaired by Prof Raad Shakir.

It is initially unclear who owns this proposal and whose position it represents since Topic Advisory Group for Neurology had ceased operations in October 2016, leaving proposals for these terms hanging. We had been advised by the WHO several times since early 2017 that a literature review was still in progress:

Is this proposal the outcome of a now concluded literature review and do these recommendations already have the approval of ICD Revision?

Or does this proposal represent only the position of Dr Dua or the Department of Mental Health and Substance Abuse?

Four weeks after submitting these recommendations, Dr Dua responds:

“…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 neither Dr Dua, Dr Saxena or (what remains of) TAG Neurology will provide any responses to requests for additional clarifications.

 

Dr Tarun Dua’s proposal

The proposal recommends 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.

Note that Dr Dua has not taken the existing ICD category terms as her reference point — ICD does not use the term, “Myalgic encephalitis” or the composite terms, “Myalgic encephalitis/Chronic Fatigue Syndrome” or “ME/CFS.”

It is not evident from the proposal what Dr Dua/TAG Neurology intends to do with the current Concept Title, Postviral fatigue syndrome — which the proposal does not mention, at all. Nor can it be determined what new hierarchy is being proposed between the terms. Nor is any rationale provided for using different nomenclature to the existing ICD terms.

Leaving aside the proposal, per se, the rationales that accompany it, the misconceptions contained within it and the narrow range of studies it relies on, the submission is sloppy and not fit for purpose.

The rationale for the proposal includes:

“…the lack of evidence regarding any neurological etiopathogenesis of chronic fatigue syndrome…

“When there is sufficient evidence and understanding of the pathophysiological mechanisms, diagnostic biomarkers, and specific treatments, the syndrome can be appropriately classified within the proper block.

“The predominant symptom of those with ME/CFS present is severe fatigue, a manifestation of skeletal muscle dysfunction…

“Epidemiological and Pathophysiological evidence is limited, conflicting, and does not support ME/CFS as a disease of the nervous system or with a principally neurobiological underpinning…

“ME/CFS is thus not a disease of the nervous system. It should be categorized in the Signs and Symptoms chapter given the lack of clear evidence pointing to the etiology and pathophysiology of this syndrome until evidence to organ placement is clarified in years to come.”

 

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

One also has to question why this proposal was submitted at this point when advocates had been advised several times that an in-house evidence review was in progress.

This proposal from a staffer in the Department of Mental Health and Substance Abuse (submitted apparently on behalf of a retired external advisory group) appeared to sit outside that evidence review. But when questioned about the proposal’s status, no-one within WHO seemed to want to have to acknowledge its existence or clarify whether and how it related to the evidence review.

 

Lack of consensus between WHO staffers and ICD Revision

In March 2017, Dr Robert Jakob, Team Leader Classifications and Terminologies, had given the assurance, via an email sent to Suzy Chapman (Dx Revision Watch) and CCd to Stefanie Weber; Dr Christopher Chute; Linda Best; Molly Meri Robinson Nicol; Dr Geoffrey Reed; Dr Tarun Dua; Dr Ties Boerma and the Countess of Mar, that:

“As discussed earlier, chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms.'”

Yet this proposal submitted by Dr Dua proposes to do just that.

Evidently, there is a lack of consensus between the WHO’s senior classification lead, Dr Robert Jakob, and Dr Dua/TAG Neurology.

Dr Dua’s proposal also fails to take into consideration WHO/ICD-11 guiding principles on relocation of legacy terms to other chapters. For an expanded commentary on ICD-11 principles concerning potential relocations see Extract from Response to Dr Dua Proposal of November 6 2017.

Nor do the recommendations consider any proposed relocation in the context of data collection, statistical analysis and backward compatibility with ICD-10 and its clinical modifications.

To continue with the status of these terms in the ICD-11 draft, up to its release in June 2018, go to Part Two

 

References:

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

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

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

Why is this proposal for the G93.3 legacy terms for ICD-11 so important?

Post #336 Shortlink: http://wp.me/pKrrB-4hc

A copy of this post in PDF format is available here

1 Why is this proposal for ICD-11 so important?

1.1 The International Statistical Classification of Diseases and Related Health Problems (ICD) is the standard diagnostic classification of diseases for use in epidemiology, health management, clinical practice and reimbursement. ICD-10 has been translated into 43 languages and is used by WHO member states in over 100 countries.

It provides a common language for reporting and monitoring the incidence and prevalence of diseases and other health problems. This allows for global comparison and data sharing in a consistent, standardized way between hospitals, regions and countries and over periods of time.

ICD is used to report and summarize an episode of care after the event. Data recorded on many types of medical information and other records, including death certificates, provides the basis for analyses of national mortality and morbidity statistics by WHO member states, which are used to inform decision-makers and commissioners and to monitor health related spending.

Users include physicians, nurses, allied health care providers, researchers, health information managers and technology workers, coders, policy-makers and insurers [1].

1 World Health Organization

ICD-11 is an electronic product designed to be used in computerized health information systems and will link to other globally used clinical terminology systems, like SNOMED CT.

Inappropriate classification of the G93.3 “legacy” categories for ICD-11 will negatively influence perceptions of the disease and the clinical care that patients receive throughout the world ‒ with implications for service commissioning, the types of medical investigations and treatments that clinicians are prepared to consider and medical insurers prepared to fund, the provision of welfare benefits, social care, disability adaptations, education and workplace accommodations.

It is crucial that international organizations, their clinical and research allies and patient and advocate stakeholders take some time to review our proposal, register with the Beta draft and submit a considered response. Over 45 stakeholder organizations have already commented in support.

1.2 After four years of uncertainty, it’s important that the G93.3 “legacy” terms are included and appropriately classified for the initial 2018 release of ICD-11

Although revision of ICD-10 has been underway since 2007, the work group with responsibility for the G93.3 categories has yet to reach consensus over how these terms should be classified for the new edition. Since early 2013, there have been no proposals in the public version of the ICD-11 Beta draft for stakeholders to review, input into or comment on.

The terms were finally restored to the Beta draft on March 26, but with this caveat: “While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”

Evidently, the work group has not yet reached consensus (or if it has, has not reached consensus with the WHO classification experts and Joint Task Force, to which it reports).

1.3 Why is the timing so critical?

In order to present an initial version of ICD-11 to the World Health Assembly in May 2018, the classification will need to be finalized by the end of this year. For proposals to be considered for inclusion in the 2018 release, they were required to be submitted by a March 30 deadline.

That leaves us with this situation:

  • virtually no information about what the work group might be considering;
  • having missed the March 30 deadline, no indication of whether any proposals that might be released by the work group between now and the end of the year would be included in the initial 2018 release or rolled forward for consideration for inclusion in the 2019 release;
  • if no consensus has been reached before the end of the year, whether the classification would go forward with the “placeholder” listing or whether the terms would be omitted from the initial 2018 release.

Given the uncertainties, it was crucial we submit an alternative option. Stakeholders need to submit comments as soon as possible as it’s not clear whether there is a cut off point for consideration of comments on proposals that met the March 30 deadline.

1.4 Classification is important for protection against misdiagnosis and medical mismanagement

Prior to July 2015 (in the case of SNOMED CT) and prior to April 2016 (in the case of the UK Read Codes CTV3 primary care terminology system) both terminology systems had CFS, ME and their synonym terms dual classified under mental health disorders.

The WHO’s unmodified ICD-10 does not include CFS in the Tabular List, only in the Index. But in the Tabular List, ICD-10 includes several other coded terms which have been misapplied to CFS and ME patients, notably, the various ICD-10 Somatoform disorders categories and Fatigue syndrome, which is coded to Neurasthenia.

Misapplication of these codes has been used to deny patients access to appropriate medical care, to secondary referrals, investigations, emergency treatment, benefits, social care and disability services and in some cases, used to section patients for psychiatric treatment against their will.

Families are still being referred to social services and child protection agencies. Children and young people continue to be removed  from parental care because an existing diagnosis of CFS or ME has been contested or because they have been wrongly diagnosed with “Pervasive refusal syndrome” or as “school refusers,” or their parents accused of “Factitious disorder imposed on another.”

The Somatoform disorders, Neurasthenia and Fatigue syndrome are being replaced for ICD-11 with a new, single “Bodily distress disorder (BDD)” category which is close to the DSM-5 “Somatic symptom disorder (SSD).” BDD poses the same threat to CFS and ME patients as DSM-5’s SSD.

The Netherlands and Germany have witnessed the roll-out of guidelines and services for “MUS” and for “functional somatic syndromes.”

Already in use in Denmark, in clinics and research, Per Fink seeks to colonize Europe with the “Bodily distress syndrome” diagnostic construct, which subsumes and replaces CFS, ME, IBS and FM.

Last year, the Ministry of Science and Research, Hamburg, Germany, provided funding for EURONET-SOMA (European Network to improve diagnosis, treatment and health care for patients with persistent somatic symptoms) comprising a panel of 29 researchers from Denmark, the Netherlands, Sweden, Norway, Latvia, Belgium, United Kingdom, Germany and Russia, to develop a joint research agenda and work towards a common understanding of the terminology, conceptualization and management of “persistent somatic symptoms” and for interdisciplinary agreement on a consistent diagnostic classification.

In the UK, “Medically unexplained symptoms (MUS)” and “Persistent physical symptoms (PPS)” services are proliferating. Funding is being made available for integrated IAPT (Improving Access to Psychological Therapies) services delivering CBT and other therapies for “MUS”; in some cases, bids are being invited specifically for developing IAPT CBT or CBT/GET for CFS patients. One NHS Trust had invited Per Fink and his colleagues over to the UK to train up local GPs in the TERM model.

In at least one part of the country, a specialised CFS service has been decommissioned in order to save money and put out to tender for a combined IAPT type service for CFS and chronic pain.

A new “Joint Commissioning Panel for Mental Health Guidance for commissioners of services for people with medically unexplained symptoms” guideline was published in February, in which CFS and ME are included as “functional somatic syndromes” [2].

2 Guidance for commissioners of services for people with medically unexplained symptoms February 2017

The push to commission “MUS” services is relentless. UK patients have reported having their CFS, ME diagnoses challenged by their practitioners and re-diagnosed with “MUS” or with a mental health disorder.

Patients need protection: the G93.3 “legacy” terms must be appropriately classified for ICD-11; safeguarded with reciprocal exclusions for “Fatigue” and “Bodily distress disorder” and not secondary parented under inappropriate chapters or parent classes
.

Extract from ICD-11 Beta Proposal Q & A Suzy Chapman, April 2017 version 2

Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

A PDF Q & A for our proposal can be downloaded here

A copy of this post in PDF format is available here

International support for proposal for G93.3 legacy terms for ICD-11

Post #335 Shortlink: http://wp.me/pKrrB-4gL

The revision of the World Health Organization’s ICD-10 and development of ICD-11 was launched in 2007.

After several extensions to the timeline, WHO plans to present a version of ICD-11 at the World Health Assembly, in May 2018, with the intention of releasing the new edition at some point later that year. Endorsement will be sought later.

In order to be ready to present in May 2018, the final round of editing will need to have been completed by the end of 2017.

This November 2016 presentation by WHO’s Dr Robert Jakob sets out the targets and timelines, as they had stood last year.

There was a March 30 deadline for submission of proposals for consideration for inclusion in the 2018 version. Proposals received after that date are expected to be rolled forward for consideration for inclusion in the first annual maintenance and update revision of the new edition, in 2019.

On March 27, UK and US advocates, Suzy Chapman and Mary Dimmock, submitted a formal proposal via the ICD-11 Beta draft Proposal  Mechanism for the restructure of the ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

For a summary of the proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

International stakeholder support

There has been considerable support for the proposal, with over 540 “Agrees.” International patient, advocacy and research organizations and individual stakeholders have submitted more than 370 comments.

To date, these organizations have submitted responses:

UK
Invest in ME Research
Hope 4 ME & Fibro Northern Ireland
The Devon ME Support Group
The Welsh Association of ME & CFS Support (WAMES)

Forward-ME  A group convened and chaired by the Countess of Mar. The members are:
ME Association
ME Research UK
Action for M.E.
TYMES Trust
reMEmber CFS
Blue Ribbon Awareness of ME (BRAME)
ME Trust
The 25% ME Group
Invest in ME

USA
Open Medicine Foundation
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative
The Massachusetts CFIDS/ME & FM Association

Canada
The National ME/FM Action Network (Canada)
ME/FM Society of BC, Canada
Millions Missing Canada
The AQEM (Association québécoise de l’encéphalomyélite myalgique du Québec)

EU
RME The Swedish Association for ME
Norges Myalgisk Encefalopati Forening (Norway)
The Belgian ME Association
The Danish ME Association
Groep ME Den Haag (Netherlands)
ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS (Germany)
Suomen CFS-yhdistys (Finnish CFS Association)

The European ME Alliance (EMEA)  The alliance comprises:
Belgium ME/CFS Association
ME Foreningen (Denmark)
Suomen CFS-Yhdistys (Finland)
Finlands CFS-förbund
Fatigatio e.V. (Germany)
Het Alternatief (Netherlands)
Icelandic ME Association
The Irish ME Trust
Norges ME-forening (Norway)
Liga SFC (Spain)
Riksföreningen för ME-patienter (RME) (Sweden)
Verein ME/CFS Schweiz (Switzerland)
Invest in ME (UK)

Australia
ME/CFS Australia (SA)
ME/CFS and Lyme Association of WA Committee

New Zealand
NZMEAction, New Zealand

Other International
The Japan ME Association

Phoenix Rising. A patient-led and patient-run US 501(c)(3) non-profit organization which hosts the world’s largest internet forum for ME/CFS patients

Facebook groups and other groups
Race to Solve ME/CFS
M.E. Alliance
Global Advocates for ME
Friends for Honesty about ME
Support for the Followers of Dr Myhill’s Protocol

Viewing our proposal

We are inviting international patient and advocacy organizations and other stakeholders to review and comment on the proposal.

In order to view the proposal in the Proposal Mechanism you will first need to register with the Beta platform (you can register, if you wish, using an existing social media, Yahoo, Google or MS account).

Register for access here: http://bit.ly/ICD11Registrationpage

There is a short tutorial video on how to register, here: http://bit.ly/ICD11regtutorial

When you are registered and logged in, go straight to this page to view and comment on our proposal:

https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/988657115?readOnly=true&action=ComplexHierarchicalChangesProposal&stableProposalGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, here:

Suzy Chapman, Mary Dimmock Proposal for ICD-11

If you are commenting on behalf of an organization, please state the organization’s name and in what capacity.

If you agree with our proposal, the “Agree” button is located directly under the blue Reference links.

If you would like to leave a comment on our proposal, the “add new comment” box is located right at the bottom of the web page, under the most recent comments.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017 http://bit.ly/Proposal111QA

For a summary of our proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
For background to Part Two see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One

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