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Updates on ICD-11 and other classification and terminology systems

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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SNOMED CT UK Edition release 20181001

The October 01 release of the SNOMED CT UK Edition is now available from the NHS Digital public version of the SNOMED CT browser.

This UK release incorporates the addition of the parent "Disorder of nervous system" for CFS and terms under Synonyms, as approved and implemented for the July 2018 release of SNOMED CT International Edition.

SCTID: 52702003 Chronic fatigue syndrome (disorder) is now classified under supertype SCTID: 118940003 Disorder of nervous system (disorder).

Concept: SCTID: 52702003: Chronic fatigue syndrome (disorder) was already mapped in the SNOMED CT to ICD-10 cross map to G93.3 Postviral fatigue syndrome. This change of parent Concept or supertype consolidates that existing relationship.


SNOMED CT UK Edition release 20181001

https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104





A copy of my full statement on the addition of the Disorder of nervous system parent for CFS and its Synonyms terms can be downloaded here:

PDF: Statement on SNOMED CT and Chronic fatigue syndrome August 2018:

https://dxrevisionwatch.files.wordp...snomed-ct-and-chronic-fatigue-syndrome-v1.pdf


Edited to insert:
The October release of the Canadian Edition has been now been posted


SNOMED CT Canadian Edition release 20181030

http://browser.ihtsdotools.org/?per...omed&langRefset=19491000087109,20581000087109



Edited to insert:
The November release of the Swedish Edition has been now been posted


SNOMED CT Swedish Edition release 20181130

https://browser.ihtsdotools.org/?pe...g/api-exten/snomed/&langRefset=46011000052107




Note: the Swedish Edition includes a separately coded for Concept term:

SCTID: 55941000052101 | kronisk trötthet | [Chronic fatigue (finding)].

This is marked with the Swedish flag symbol to denote that this SNOMED CT Concept term is exclusive to the Swedish Edition. It can be viewed here:


https://browser.ihtsdotools.org/?perspective=full&conceptId1=55941000052101&edition=se-edition&release=v20181130&server=https://browser.ihtsdotools.org/api-exten/snomed/&langRefset=46011000052107

------------------

The November 30 release of SNOMED CT Argentinian Edition is also published:

SCTID: 52702003 síndrome de fatiga crónica (trastorno)

https://browser.ihtsdotools.org/?pe...ls.org/api-exten/snomed/&langRefset=450828004


Incorporation into other national editions


The next release of the Uruguay Edition is scheduled for December 15;



The January 31, 2019 release of the Australian Edition is now available:

https://browser.ihtsdotools.org/?pe....org/api/snomed/&langRefset=32570271000036106




If your country is a member of SNOMED International but does not have a publicly accessible browser hosted on the International Edition platform or hosted on its own platform, please refer to your country’s SNOMED CT National Release Centre website for the release schedule.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Re: a request that "neurasthenie" is removed from the list of Synonyms terms in the Netherlands Edition of SNOMED CT:

I have been advised, today, that for the March 2019 release of the SNOMED CT Netherlands Edition, the term "neurasthenie" will be removed from the Synonyms list under Concept 52702003 Chronic fatigue syndrome (disorder) for consistency with the SNOMED CT International Edition and for consistency with the WHO's ICD-10, which has an exclusion for G93.3 under F48.0 Neurasthenia.

To the best of my knowledge, no other national editions of SNOMED CT had retained Neurasthenia, either as an SCTID Concept term or as a term under Synonyms, following the retirement of the Neurasthenia term from the International Edition, a number of years ago.

Its removal from the next release of the Netherlands Edition is welcomed and with thanks to Netherlands advocate @mecvsnieuws who has engaged with Mr Volkert for a prompt and successful resolution.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Tomorrow I retire from advocacy, after 16 years mired in the cesspit that is ME politics.

As previously mentioned, I am providing a list of 10 key "legacy" reports and documents from my website on the current status of ICD-11 and SNOMED CT.

There is an additional post to add which I have not had time to compile this week. I will edit this in when it's been published on my site, next week.

Once I have stepped back, it's not my intention to continue to contribute to forums, Twitter or other platforms on any issues. But I shall be keeping an eye on the orange ICD-11 Maintenance platform in case there are any developments with my unprocessed proposals, with the Dr Tarun Dua proposal of November 6, 2017, or with any potential new proposals from the ICD-11 MSAC or CSAC committees that may require my attention.


Key legacy posts and documents from Dx Revision Watch:

1 Document: Comparison of Classification and Terminology Systems, July 30, 2018 (jointly with Mary Dimmock)

https://dxrevisionwatch.com/2018/07/30/comparison-of-classification-and-terminology-systems/

2 Document: Comparison of SSD, BDD, BDS, BSS in classification systems, July 21, 2018 (jointly with Mary Dimmock)
https://dxrevisionwatch.com/2018/07/21/comparison-of-ssd-bdd-bds-bss-in-classification-systems/

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

https://dxrevisionwatch.com/2018/07...ernational-classification-of-diseases-icd-11/

4 Update on SNOMED CT and Bodily distress disorder, August 1, 2018
https://dxrevisionwatch.com/2018/08/01/update-on-snomed-ct-and-bodily-distress-disorder/

5 Chronic fatigue syndrome classified under Neurological disorder in SNOMED CT International Edition, August 1, 2018
https://dxrevisionwatch.com/2018/08...-disorder-in-snomed-ct-international-edition/

6 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One, August 17, 2018
https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-one/

7 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two, August 17, 2018
https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-two/

8 PDF: Proposal and Rationale: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017
PDF: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018


9 Update to addition of Disorder of nervous system parent for Chronic fatigue syndrome and terms under Synonyms in SNOMED CT, October 5, 2018
https://dxrevisionwatch.com/2018/10...ndrome-and-terms-under-synonyms-in-snomed-ct/

10 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
https://dxrevisionwatch.com/2018/11/22/update-on-the-status-of-the-classification-of-pvfs-me-and-cfs-for-icd-11-part-three-who-rejects-dr-duas-proposal/
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I shall not be available to comment further on this new paper as I am now retired, but a copy needs to be in this thread.

Note that the ICD-11 PHC has not yet been released by WHO and WHO has published no date for its projected finalization and release.

In April this year, WHO was asked to confirm the current development timeline for the ICD-11 PHC via a formal request to their information office, but failed to provide me with this information. Dr Geoffrey Reed had also been asked to provide clarity around the finalization and release targets for the ICD-11 PHC and whether any public review and comment exercise has been considered. My understanding is that Forward-ME did not receive a response, either. I am no longer in a position to confirm whether Forward-ME had followed up on this.

It remains unclear whether the ICD-11 PHC cannot be finalized and released until after the core ICD-11 MMS has been approved by the World Health Assembly. (ICD-11 core version is currently scheduled for presentation for approval in May 2019, with WHA's approval, if obtained, coming into effect on January 01, 2022.) It also remains unclear whether any additional field trials or evaluation of existing field trials for proposed new categories for the ICD-11 PHC are being planned or are in progress.

Note also, that although the paper refers to the DSM-5's Somatic symptom disorder (SSD), it makes no mention of, or comparison with, Bodily distress disorder (BDD), the divergent SSD-like construct that has already been included in the core ICD-11, as released on June 18, 2018.


Html:http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-44462018005007108
PDF:http://www.scielo.br/pdf/rbp/2018nahead/1516-4446-rbp-1516444620180003.pdf

(PDF attached to post)

Studying ICD-11 Primary Health Care bodily stress syndrome in Brazil: do many functional disorders represent just one syndrome?.

Brazilian Journal of Psychiatry, Epub October 11, 2018.https://dx.doi.org/10.1590/1516-4446-2018-0003

Fortes, Sandra, Ziebold, Carolina, Reed, Geoffrey M., Robles-Garcia, Rebeca, Campos, Monica R., Reisdorfer, Emilene, Prado, Ricardo, Goldberg, David, Gask, Linda, & Mari, Jair J.. (2018).
 

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Dx Revision Watch

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Important update regarding proposals for ICD-11

As reported earlier in the thread, there have been three proposals for PVFS, BME and CFS waiting to be reviewed and processed:


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

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

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

( For my August 2018 report see: Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two )


Dr Tarun Dua's proposal:


Dr Tarun Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse.

Dr Dua's proposal, which she has stated was submitted on behalf of the now sunsetted Topic Advisory Group for Neurology, had recommended 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.

If you are not registered with the ICD-11 Proposal platform, you can access Dr Dua's proposal at the end of this PDF: https://dxrevisionwatch.files.wordpress.com/2018/08/dua1.pdf

You can read the response to Dr Dua's proposal by Dimmock and Chapman here: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018


Important update regarding proposals for ICD-11

Yesterday, November 19, Dr Dua's proposal was marked as Rejected by the 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


---------------------------------------------

The decision to Reject Dr Dua's proposal that the terms should be relocated under the Symptoms, signs chapter is accompanied by this Comment from the ICD-11 Proposal Platform admins "Team3 WHO":

https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef


In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision.

Team3 WHO 2018-Nov-19 - 07:10 UTC


------------------------

If you are not registered with the ICD-11 Proposal platform, you can access a full copy of Dr Dua's proposal and rationale at the end of this PDF: https://dxrevisionwatch.files.wordpress.com/2018/08/dua1.pdf

You can read the response to Dr Dua's proposal by Dimmock and Chapman here: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

The proposal submitted by Dimmock and Chapman on March 27, 2017 can be read here: Proposal: Revision of G93.3 legacy terms for ICD-11

You can read the WHO's position on potential relocations, here:

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, 201

------------------------


As you know, I retired from advocacy work in early October, but I continue to monitor the ICD-11 platforms for my own interest.

If there are any changes to the current listing of these terms, which can be viewed below without registration, or if the proposal submitted by Dimmock and Chapman on March 27, 2017 is processed or commented on by WHO admins, MSAC or CSAC, I will post further information:

Blue Platform (ICD-11 "Implementation Version" as released in June 2018):
ICD-11 for Mortality and Morbidity Statistics (Release for 2018):

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

Orange Platform (ICD-11 Maintenance):
Foundation Component: https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/569175314
Mortality and Morbidity Statistics: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
 

Dx Revision Watch

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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Resurfacing to confirm that the November 30, 2018 Release of the Swedish Edition of SNOMED CT was posted today.

This national edition release incorporates the change of parent for SCTID: 52702003 | kroniskt trötthetssyndrom | and terms under Synonyms.

I have added this information and a screenshot to the end of Post #61.

Also posted, today, the November 30 release of SNOMED CT Argentinian Edition
SCTID: 52702003 síndrome de fatiga crónica (trastorno)

https://browser.ihtsdotools.org/?pe...ls.org/api-exten/snomed/&langRefset=450828004
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Resurfacing from retirement to confirm that the January 31, 2019 Release of the Australian Edition of SNOMED CT is now available.

This national edition release incorporates the change of parent for SCTID: 52702003 | Chronic fatigue syndrome | and terms under Synonyms that was approved and implemented for the July 2018 release of the SNOMED CT International Edition.

I have added this information and a screenshot to the end of Post #61.


The next national release to look out for will be the March 31, 2019 Netherlands Edition.

Although the SNOMED CT Concept code "Neurasthenia" had been retired from the core International Edition and from national editions some years ago, the Netherlands Edition retained "neurasthenie" under the list of Synonym terms to SCTID: 52702003 | chronischevermoeidheidssyndroom.

Pim Volkert (Terminology Co-ordinator, Nictiz, and lead for the Netherlands SNOMED CT National Release Centre) confirmed in October last year, that the term "neurasthenie" will be removed from the list of Synonyms terms for the Netherlands Edition's March 31, 2019 release.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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As some of you will be aware, there are no disorder/disease descriptions or diagnostic guidelines for any chapters of ICD-10 other than for Chapter V Mental and Behavioural Disorders.

ICD-10 Volume 1 includes only brief descriptions for the mental and behavioural disorder categories in Chapter V.

Two companion publications were developed for use with ICD-10 which expand on Chapter V disorder descriptions and also provide diagnostic guidelines. These companion publications are available as license free downloads:


The ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines (aka "The Blue Book"):​
intended for mental health professionals for general clinical, educational and service use.​


The ICD-10 Diagnostic criteria for research (aka "The Green Book"):​
produced for research purposes and designed to be used in conjunction with the Clinical descriptions and diagnostic guidelines.​

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed an equivalent publication - the "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders."


ICD-11 is scheduled for presentation to the World Health Assembly (WHA) in May, this year.

But WHA's endorsement of ICD-11 (assuming it does receive approval in May) will not come into effect until January 01, 2022. After this date, WHO member states can start using ICD-11 for reporting health statistics when their health systems have transitioned from ICD-10 to the new edition.

Although WHO will be encouraging member states to start preparations for migration, there is no mandatory implementation date and 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, WHO will be accepting data reported using both ICD-10 and the new ICD-11 code sets.

No countries have yet 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 system and mandatory terminology system for use in the NHS is ICD-10 (Version: 2015) and SNOMED CT UK Edition (mandatory adoption in primary care from April 2018; mandatory adoption across all NHS secondary care by 2020).



The development process for the ICD‐11 CDDG has been undertaken via the Global Clinical Practice Network:

https://gcp.network/en/about

ICD-11 Guidelines:

https://gcp.network/en/icd-11-guidelines

Practitioners and institutions who signed up to participate in the CDDG's development have been able to review and input into the draft texts. But no draft of the texts has been made available for stakeholder scrutiny and comment. So, for example, I have not had access to the full draft text for the Clinical descriptions and diagnostic guidelines for ICD-11's "Bodily distress disorder (BDD)" during any stage of the drafting process.

The CDDG guidelines include the "Essential (Required) Features, Boundaries with Other Disorders and Normality, Additional Features sections, Culture-Related Features."

Disorder descriptions for ICD-11 are less rigid than the criteria sets in DSM-5 and allow practitioners more flexibility to use clinical discretion when making diagnoses.

Note that the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders should not be confused with the ICD-11 Primary Health Care (PHC) Guidelines for Diagnosis and Management of Mental Disorders (ICD-11 PHC), for which no timeline for finalization and release has been published by WHO. The ICD-11 PHC is a revision of the ICD-10 PHC (1996). Intended as a non WHO mandatory manual, the revised publication is proposed to comprise 27 mental disorder categories.



This paper in the February 2019 edition of World Psychiatry describes major changes to the structure of the ICD‐11 classification of mental disorders as compared to the ICD‐10; discusses new categories that have been added for ICD‐11 and presents rationales for their inclusion; and describes important changes that have been made in each ICD‐11 disorder grouping.

What the paper does not give is a firm release date for the CDDG - stating only that "WHO will publish the CDDG as soon as possible following approval of the overall system by the WHA."



Reed GM, First MB, Kogan CS, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019;18(1):3-19. Reed GM, First MB, Kogan CS, et al.

HTML: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/
PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/pdf/WPS-18-3.pdf



(...)

Disorders of bodily distress and bodily experience

ICD‐11 disorders of bodily distress and bodily experience encompass two disorders: bodily distress disorder and body integrity dysphoria. ICD‐11 bodily distress disorder replaces ICD‐10 somatoform disorders and also includes the concept of ICD‐10 neurasthenia. ICD‐10 hypochondriasis is not included and instead is reassigned to the OCRD [Ed:Obsessive‐compulsive and related disorders] grouping.

Bodily distress disorder * is characterized by the presence of bodily symptoms that are distressing to the individual and an excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers69. The disorder is conceptualized as existing on a continuum of severity and can be qualified accordingly (mild, moderate or severe) depending on the impact on functioning. Importantly, bodily distress disorder is defined according to the presence of essential features, such as distress and excessive thoughts and behaviours, rather than on the basis of absent medical explanations for bothersome symptoms, as in ICD‐10 somatoform disorders.



*I have embedded links to the ICD-11 Orange Maintenance Platform disorder descriptions (these are not included in the paper).

Note that DSM-5's Somatic symptom disorder is included under Synonyms to ICD-11's Bodily distress disorder.

Note also that Mary Dimmock and I are still waiting for our proposals for addition of exclusions for (B)ME and CFS under Bodily distress disorder to be processed.



SNOMED CT

The SNOMED CT Concept term SCTID: 723916001: Bodily distress disorder was added to the July 2017 release of SNOMED CT International Edition.

SNOMED International's classification leads confirmed that the term was added by the team working on the SNOMED CT and ICD-11 MMS Mapping Project as "an exact match for the ICD-11 term, Bodily distress disorder."

In ICD-11, Bodily distress disorder has three severity specifiers: Mild BDD; Moderate BDD; and Severe BDD, which are each assigned a unique code and a unique description/characterization text. It was submitted that including the three ICD-11 BDD severities might help clinicians and coders to distinguish between the SNOMED CT/ICD-11 Bodily distress disorder concept term and the similarly named, but differently conceptualized, Bodily distress syndrome (Fink et al. 2010), which has two severities. A request for addition of the three BDD severities was submitted and approved in early 2018 and the specifiers (Mild BDD; Moderate BDD; and Severe BDD) were added as Children under BDD for the July 2018 release of the International Edition.



When the WHO has released the CDDG, I will update this thread.


-------------------------------------

Resources:

Comparison of Classification and Terminology Systems, Version 3, Dimmock & Chapman, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Version 1, Dimmock & Chapman, July 2018

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

Suzy Chapman Owner of Dx Revision Watch
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Update on the March 2019 release of SNOMED CT Netherlands Edition:

The SNOMED CT Concept term Neurasthenia and some associated terms had been retired from the International Edition and from national editions some years ago.

But the Netherlands Edition retained the term neurasthenie under the chronischevermoeidheidssyndroom (CVS) Synonyms list.

See below, from the September 2018 Netherlands Edition:




In October 2018, @mecvsnieuws on Twitter approached Pim Volkert (Coördinator terminologie bij Nictiz) with a request for retirement of the term neurasthenie from the Synonyms list for Concept SCTID: 52702003 chronischevermoeidheidssyndroom for consistency with the International Edition and with other national extensions.

This request and accompanying rationale was promptly accepted and approved for implementation in the March 31, 2019 release.


I am pleased to confirm that this content change has been incorporated into the Netherlands Edition March 31 release, which was posted on the SNOMED CT browser platform, today:

https://browser.ihtsdotools.org/?pe...snomed/&langRefset=31000146106,15551000146102





A note about retired SCTID Concept terms and retired Synonyms terms in SNOMED CT International Edition and National Editions:

The technical term for the retirement of SNOMED CT Concepts or other terms is "Inactivation".


https://browser.ihtsdotools.org/?

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

Look under Options on the left of the Search box.

Select:

"Status: Active and inactive concepts" from the Options dropdown.

Enter a search term in the Search box.


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

Click on a term to display the Concept Details panel for that specific term.

Inactive concepts also display on a pink ground in the box under Parents in the Concept Details panel, like so:


SNOMED CT International Edition:

https://browser.ihtsdotools.org/?pe....org/api/snomed&langRefset=900000000000509007





So although retired or "Inactive" terms remain searchable for within the SNOMED CT terminology system, they are designated as retired/Inactive by their pink ground (and also by textual content within the Concept Details tabs).
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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From The ME Global Chronicle's Facebook page (Posted 04 November 2019):

https://www.facebook.com/groups/TheMEGlobalChronicle/permalink/2571455346419911/


Rob Wijbenga shared a link.

Update on the classification of PVFS, ME and CFS for ICD-11

ICD-11 Report One | November 2019

In this important update on ICD-11, Suzy Chapman writes: "Please note that I have retired from active advocacy work around classifications and coding. It is crucial that advocates, patient groups and their professional allies inform themselves, become confident around the various classification and terminology systems and take responsibility, as stakeholders, for submitting timely responses and requests for changes, because I shall no longer be doing this work."

The International Classification of Diseases 10th Revision (ICD-10) is the global standard diagnostic classification of diseases for use in epidemiology, health management and clinical practice. ICD is maintained and published by the World Health Organization (WHO).

How disease terms are classified has implications for commissioning of services and may negatively influence the perceptions of researchers, clinicians, allied health professionals, medical insurers and agencies involved with benefits assessment, provision of social care, access to disability adaptations and workplace and education accommodations.

The next major revision of ICD (ICD-11) has been in development since 2007.

In June 2018, the WHO published a stable version of ICD-11 as an “advance preview” to enable Member States to start planning for implementation of the new edition.

On May 25, 2019, the World Health Assembly (WHA) voted unanimously to adopt ICD-11.

WHA’s endorsement of the new edition won’t come into effect until January 01, 2022, which is the earliest date from which Member States can begin using ICD-11 for reporting data.

There is no mandatory implementation date and Member States will migrate to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources. During this transitional period, the WHO will accept data recorded using ICD-10 or the new ICD-11 code sets.

The progress of the G93.3 terms through the ICD-11 Alpha and Beta drafting stages has been a frustrating and tortuous journey hampered by a lack of transparency and accountability on the part of ICD Revision and an apparent indifference to maintaining effective stakeholder engagement.

How have the ICD-10 G93.3 terms been classified for ICD-11?

Download my report at:

PDF:

https://dxrevisionwatch.files.wordpress.com/2019/11/update-on-classification-of-pvfs-me-cfs-for-icd11.pdf

or

http://bit.ly/MEGCICD11

Suzy Chapman
Dx Revision Watch

https://dxrevisionwatch.com

note: this update has been written by Suzy for the ME Global Chronicle and will be included in the December 2019-issue of the magazine as well.
 

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It's taken since 2014 to achieve this....

WHO/ICD Revision has approved the addition of Exclusions for 8E49 Postviral fatigue syndrome; 8E49 Benign myalgic encephalomyelitis; and 8E49 Chronic fatigue syndrome under ICD-11's Bodily distress disorder:


On December 30, 2014, I submitted a proposal and rationale for addition of Exclusions for Benign myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome under ICD-11's Bodily distress disorder.

In 2014/15, I had also discussed the need for exclusions for these terms under BDD with ICD Revision's Dr Geoffrey Reed, via personal correspondence and via the Proposal Mechanism comments facility.

This proposal was subsequently marked by the ICD-11 Beta Admin team as "Rejected".

Further proposals and rationales for Exclusions for these terms under Bodily distress disorder were submitted jointly by Chapman & Dimmock (on March 27, 2017, as part of a larger submission) and separately by Suzy Chapman (on March 28, 2017). These submissions were also rejected (in February and March, 2019).

On December 02, 2019, I resubmitted for the addition of Exclusions for Benign myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome.

In my accompanying rationale, I referenced earlier rationales for the need for exclusions but also included quotes from the publication: IACAPAP Textbook of Child and Adolescent Mental Health, Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition [1].

1 Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019: https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf

(I will post a copy of the rationale I submitted in the next post.)


I am delighted to confirm that my December 02, 2019 proposal for exclusions has been accepted.

The legend for the proposal's status was changed from "Submitted" to "Implemented" on January 17 and exclusions for these terms have been added to the current version of the orange ICD-11 Maintenance Browser.

When WHO posts the next release of the blue ICD-11 MMS Browser, later this year, it should reflect the addition of exclusions for the 8E49 coded terms.


So this is how the listing for Bodily distress disorder now appears in the orange ICD-11 Maintenance platform since the approval of addition of exclusions, on January 17:

https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268





-------------------------


From the Proposal Change History:

 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Rationale for Proposal for Addition of Exclusions (submitted December 02, 2019):


Suzy Chapman

Content Enhancement Proposal
2019-Dec-02 - 11:53#296I



The author has no affiliations or conflicts of interest to declare.

Rationale:

In ICD-10, there is an exclusion for G93.3 Postviral fatigue syndrome under F48.0 Neurasthenia and its inclusion, Fatigue syndrome [1]. Chronic fatigue syndrome is indexed in Volume 3: Alphabetical Index to the G93.3 code [2].

The NHS Digital publication: National Clinical Coding Standards ICD-10 5th Edition (2018) provides the following guidance (on page 84):

"Caution is required when 'fatigue syndrome' is used as a diagnosis within the medical record. The Alphabetical Index takes the coder to F48.0 Neurasthenia which includes fatigue syndrome. However many patients actually have chronic fatigue syndrome, which is an alternative name for the postviral fatigue syndrome or myalgic encephalomyelitis (ME). Chronic fatigue syndrome is coded to G93.3 Postviral fatigue syndrome. Coders should therefore clarify the nature of the fatigue with the responsible consultant before assigning a code." [3].

For ICD-11, the ICD Concept Title, Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are coded at 8E49 in Chapter 08: Diseases of the nervous system, under parent: Other disorders of the nervous system [4].

For ICD-11, there are currently no exclusions for 8E49 Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder (which has subsumed and replaced ICD-10's F48.0 Neurasthenia and its inclusion, Fatigue syndrome, and most of ICD-10's F45.x Somatoform disorders).

In support of earlier submissions (which were rejected without adequate rationales being provided), I have already provided evidence that the new ICD-11 Concept Title term and disorder construct: Bodily distress disorder is being confused by academics, researchers and clinicians with the differently conceptualised, Fink et al (2010) Bodily distress syndrome (BDS), under which construct the authors subsume CFS, ME, IBS and Fibromyalgia under a single, unifying BDS diagnosis [5].

This was predicted and inevitable, since the term "Bodily distress disorder" has a history of being used interchangeably (since 2007) for the Fink et al (2010) "Bodily distress syndrome" construct.

While this concern has been acknowledged by Fuss, Jakob, Reed et al (2019) it remains unaddressed [6].

In their March 2017 submission, Chapman & Dimmock set out their rationale for proposing exclusions under 6C20 Bodily distress disorder for (Benign) myalgic encephalomyelitis; and Chronic fatigue syndrome (see Proposal item: 4.3 Exclusions under Bodily distress disorder) [7].

The authors recommended insertion of exclusions for these terms to mitigate the risk of misdiagnosis with, or misapplication of an additional diagnosis of Bodily distress disorder. Again, this proposal was rejected without adequate rationales being provided.

In this new submission for exclusions, I need to draw your attention to this book chapter:

Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents in Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019 [8].

In this book chapter, the authors state:

"Chronic Fatigue Syndrome

"This condition, earlier described as "neurasthenia" and "post viral fatigue" in ICD-10, was not included in DSM-IV nor DSM-5. It is classified in ICD-11 under "other disorders of the nervous system" as "post viral fatigue syndrome." This category includes the illnesses termed "benign myalgic encephalitis" [sic] and "chronic fatigue syndrome." If the fatigue is not associated with a virus, it is recommended to consider coding it within "disorders of bodily distress," which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches)."

However, not all cases of myalgic encephalomyelitis or chronic fatigue syndrome in adults or children are preceded by a viral infection [9].

The WHO, itself, has stated: "In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research . . .The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed . . . As a result of this study, the category 'postviral fatigue' that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter. The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision. Team3 WHO 2019-Mar-04 - 22:58 UTC" [10].

Since ICD-11 includes no definitions, descriptions, criteria or any other textual content for any of the terms coded to 8E49 nor any guidelines for coders and clinicians on the application of this code, it is presumptuous and inappropriate for these authors to be recommending that paediatric Chronic fatigue syndrome "not associated with a virus" should be considered for coding under 6C20 Bodily distress disorder.

This book chapter, published this year by the International Association for Child and Adolescent Psychiatry and Allied Professions, and published ahead of implementation of ICD-11 by any member states, provides clear evidence that children and adolescents with a diagnosis of Chronic fatigue syndrome are at risk of the new Bodily distress disorder classification being misapplied.

It should also be noted that the WHO has published no field trial results or field trial evaluations on the validity, reliability, safety, prevalence and acceptability of the application of the core ICD-11 Bodily distress disorder construct in children and adolescents.

Will WHO classification experts and the MSAC and CSAC committees please consider the above when reviewing as yet unprocessed proposals and reconsider recommendations for insertion of exclusions for 8E49 Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder?

If WHO classification experts, MSAC and CSAC are not prepared to approve insertion of exclusions for these terms (which would also put ICD-11 at variance with ICD-10 and the clinical modifications of ICD-10, which explicitly exclude G93.3 under Neurasthenia) will a rationale for their decision please be provided?

References:

1 ICD-10 Version 2016: https://icd.who.int/browse10/2016/en#/F48.0

2 International statistical classification of diseases and related health problems. 10th revision, Fifth edition, 2016. Volume 3 Alphabetical index. ISBN 9789241549165: https://apps.who.int/iris/handle/10665/246208

PDF: https://apps.who.int/iris/bitstream/handle/10665/246208/9789241549165-V3-eng.pdf

3 National Clinical Coding Standards ICD-10 5th Edition: https://www.rlbuht.nhs.uk/media/7418/5503-document-07.pdf

4 ICD-11 MMS Concept Title 8E49 Postviral fatigue syndrome: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

5 Proposal for Deletion of the Entity: Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

6 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

7 Complex Hierarchical Changes Proposal: Rationale section: 4.3 Exclusions under Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

8 IACAPAP Textbook of Child and Adolescent Mental Health, SOMATIC SYMPTOM, Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019: https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf

9 "The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions" (Carruthers and van de Sande, 2005, p. 1)." National Academy of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Press. May 2015. https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness

10 Proposal Mechanism Rejection notice: Team3 WHO, November 19, 2018: https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef

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PDF of Proposal Rationale attached
 

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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I have updated my document

"ICD-11 Proposal Mechanism, status of processed proposals"

to reflect the WHO's recent implementation of the addition of exclusions for PVFS, ME and CFS under Bodily distress disorder.

A PDF of document v5, which includes a link for the Rationale for this proposal, can be downloaded at:

https://dxrevisionwatch.files.wordpress.com/2020/01/outcome-of-icd-11-processed-proposals-v5-1.pdf

ICD-11 Proposal Mechanism, status of processed proposals at 17.01.20 v5

I have also attached a copy.
 

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https://www.actionforme.org.uk/news/update-on-me-in-who-latest-disease-classification

Update on M.E. in WHO's latest disease classification

January 20, 2020

After years of hard work by M.E. advocate Suzy Chapman, the World Health Organisation (WHO) has doubled back on plans which would have made it even harder for people with M.E./CFS to get the medical care and support they need.

The WHO lists all known diseases in its International Classification of Diseases (ICD), using a system of diagnostic codes. Recent proposed changes to the ICD would have resulted in a new diagnosis of Bodily Distress Disorder replacing that which is often reffered to as Medically Unexplained Symptoms, with additional criteria that would capture people with M.E./CFS and direct them through psychiatric care.

Thanks to Suzy's determined and tenacious challenges to this, setting out clear evidence, the WHO has now agreed to include M.E. and CFS in the "exclusions" criteria for the Bodily Distress Disorder classification. This means that health professionals must rule out M.E./CFS before they can diagnose Bodily Distress Disorder. You can read more about the huge amount of work that has gone into this by on Suzy's Dx Revision Watch blog.

Without this work, people with M.E. would have experienced even more misdiagnosis and misunderstanding, and we join the M.E. community in sharing our huge gratitude with Suzy.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Fabulous work, @Dx Revision Watch, well done, that's a really important result you achieved. Thank you for all your efforts in dealing with the ICD classification of ME/CFS.
Thank you Hip and anni66 for your kind words. I haven't stopped smiling since Sunday - it's been a long slog and still need to have them approve deprecation of the "Benign" word.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Bite-sized update and annotated screenshots:


1 For anyone unclear how PVFS, ME and CFS are classified and coded in the WHO's unmodified ICD-10 Version: 2016:

The G93.3 "Concept Title" is Postviral fatigue syndrome.

Benign myalgic encephalomyelitis is an Inclusion under Postviral fatigue syndrome and is coded G93.3.





2 In the WHO's unmodified ICD-10, Chronic fatigue syndrome is included in the ICD-10 Alphabetical Index and is indexed to the G93.3 code.

ICD-10 contains no definitions or descriptive texts for any of the PVFS, BME or CFS terms.




3 Exclusions in the WHO's unmodified ICD-10:

G93.3 is excluded from F48.0 Neurasthenia and F48.0's inclusion term, Fatigue syndrome.

G93.3 is also excluded from R53 Malaise and fatigue.


4 For anyone unclear how PVFS, ME and CFS are classified and coded in the WHO's forthcoming ICD-11:

The ICD-11 "Concept Title" remains Postviral fatigue syndrome.

The new ICD-11 code is 8E49.

BME and CFS are both specified as Inclusion terms and both assigned the 8E49 code.



5 There are 14 terms including "myalgic encephalomyelitis" and "ME - [myalgic encephalomyelitis]" listed under Synonyms and Index terms.

All 14 terms are assigned the 8E49 code. The 8E49 code is mapped in the ICD-11 Mapping Tables directly to ICD-10 G93.3.


6 For ICD-11, there is a field for Description texts for all general medical diseases/conditions - not just for mental disorders.

Not all diseases or disorders have Descriptions entered.

ICD-11 contains no definitions or Description texts for any of the PVFS, BME or CFS terms.


7 Exclusions in ICD-11:

MG22 Fatigue is specified as an exclusion under 8E49.

(This MG22 Fatigue category is "R53 Malaise and fatigue" in the WHO's unmodified ICD-10).

8E49 PVFS; 8E49 BME; and 8E49 CFS are specified as exclusions under MG22 Fatigue:




8 On January 17, the WHO approved my December proposal for adding exclusions for 8E49 PVFS; 8E49 BME; and 8E49 CFS under the new ICD-11 Mental disorder category, 6C20 Bodily distress disorder.

Bodily distress disorder subsumes and replaces most of ICD-10's F45 Somatoform disorders, and F48.0 Neurasthenia.

These approved exclusions under Bodily distress disorder already display in the orange Maintenance platform and should be incorporated into the blue Implementation platform later this year, when the 2020 release is published.

Member States can begin using the ICD-11 code sets for data reporting from January 01, 2022, when their health services have implemented ICD-11. It is expected to take Member States several years to prepare for migration to the new edition.





Sources:

1 ICD-10 5th Edition Version: 2016:
https://icd.who.int/browse10/2016/en#/G93.3

2 ICD-11 Orange Maintenance Browser:

ICD-11 Foundation Component:
8E49:
https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/569175314
6C20: https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/767044268
MG22: https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/1109546957

ICD-11 (Mortality and Morbidity Statistics):
8E49:
https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
6C20: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268
MG22: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1109546957

3 ICD-11 Blue Implementation Browser Version 04/2019:
8E49:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314
 
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