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

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

ICD-11 endorsement

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

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

#WHA72 Geneva May 22–28, 2019 

Website: SEVENTY-SECOND WORLD HEALTH ASSEMBLY

Two key documents:

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

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

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

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

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

Update and revision

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

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

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

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

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

Recently processed proposals

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

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

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

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

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

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

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

Status of processed proposals at April 15, 2019:

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

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

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

Download PDF Table: Recently processed ICD-11 proposals v3

Extract:

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

08 Diseases of the nervous system

8E49 Postviral fatigue syndrome

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

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

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

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

 

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

 

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

Details tab:

 

Request for removal of the neurasthenie term:

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

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

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

 

Screenshot: SNOMED CT Netherlands Edition as it now stands:

 

 

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

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

https://browser.ihtsdotools.org/?

Accept the License Agreement, if displayed.

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

Look under Options on the left of the Search box.

Select:

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

Enter a search term into the Search box.

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

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

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

Update to addition of Disorder of nervous system parent for Chronic fatigue syndrome and terms under Synonyms in SNOMED CT

Post #345 Shortlink: https://wp.me/pKrrB-4uk

In Post #342 (August 1, 2018), I confirmed that the addition of parent: Disorder of nervous system to Chronic fatigue syndrome was implemented for the July 31, 2018 release of the SNOMED CT International Edition.

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included in a list of terms under Synonyms.

SCTID: 52702003 Chronic fatigue syndrome (disorder) and the terms listed under Synonyms are now located under supertype SCTID: 118940003 Disorder of nervous system (disorder). This change to the International Edition is being incorporated into the national editions, as they release their next updates. These are released on a staggered schedule.

The rationale for requesting this additional supertype for Chronic fatigue syndrome and the terms listed under Synonyms is set out in this August 2018 document:

PDF: Statement on SNOMED CT and Chronic fatigue syndrome

Note that prior to July 2015, Postviral fatigue syndrome had been listed under Children to SCTID: 52702003 Chronic fatigue syndrome.

But for the July 2015 release, Postviral fatigue syndrome was removed from under SCTID: 52702003 Chronic fatigue syndrome and relocated under supertype: Post-viral disorder under: Post-infectious disorder and assigned the Concept code: SCTID: 51771007.

(A change that had not been requested by the Countess of Mar during her 2014-2015 engagement with SNOMED CT terminology managers for the removal of the Mental disorder parent. Provision of the rationale for relocating Postviral fatigue syndrome was not pursued by Forward-ME.)

Incorporation of addition of supertype Disorder of nervous system into national editions

SNOMED CT U.S. Edition incorporated the change for its September 01, 2018 release:

 

SNOMED CT Belgium Edition incorporated the change for its September 15, 2018 release:

 

SNOMED CT Danish Edition incorporated the change for its September 30, 2018 release:

 

SNOMED CT Netherlands Edition incorporated the change for its September 30, 2018 release:

Note on inclusion of “neurasthenie” in the Netherlands Edition: SNOMED CT International Edition and national editions used to include a Concept term SCTID: 192439005 Neurasthenia. This Concept was retired (Inactivated) a number of years ago. However, the Netherlands Edition retained the term “neurasthenie” under the list of Synonym terms. “Neurasthenie” is designated as an “Acceptable” term in the Netherlands Dutch language reference set (open “Details” tab to view Netherlands reference sets).

Details tab:

A Netherlands advocate has contacted Pim Volkert (Terminology Co-ordinator, Nictiz, and lead for the Netherlands SNOMED CT National Release Centre) with a request and rationales for consideration of the removal of the “neurasthenie” term, for consistency with the SNOMED CT International Edition and with the WHO’s ICD-10, which has an exclusion for G93.3 under F48.0 Neurasthenia. This request has been considered and accepted. I am advised that removal of the “neurasthenie” term is anticipated to be implemented for the March 2019 release of the Netherlands Edition.

 

SNOMED CT UK Edition incorporated the change for its October 01, 2018 release:

(Public browser hosted by NHS Digital. Browser can also be accessed from the landing page of the SNOMED CT International browser platform.)

Note: the UK Edition has three severity specifier options listed under “Children” that are specific to the UK Edition.

These are assigned the discrete codes: SCTID: 377181000000104 Mild chronic fatigue syndrome; SCTID: 377171000000101 Moderate chronic fatigue syndrome; and SCTID: 377161000000108 Severe chronic fatigue syndrome.

It has yet to be established from NHS Digital in which year these severity specifier options were added to the UK Edition, to what extent they are used, and by what means clinicians would determine which of the severities to apply.

The UK Edition includes the terms Myalgic encephalitis and Myalgic encephalopathy.

 

Updated to add screenshot of Canadian Edition

SNOMED CT Canadian Edition incorporated the change for its October 30, 2018 release:

 

Updated to add screenshot of Swedish Edition

SNOMED CT Swedish Edition incorporated the change for its November 30, 2018 release:

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:

 

Updated to add screenshot of Argentinian Edition

SNOMED CT Argentinian Edition incorporated the change for its November 30, 2018 release:

 

Updated to add screenshot of Australian Edition

The January 31, 2019 release of the Australian Edition has incorporated the change:

 

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.


Media:

GP system updated to reflect M.E. as neurological, Action for M.E., August 01, 2018

NHS to update classification system to reflect that M.E. is neurological disease, ME Association, August 06, 2018

Chronic fatigue syndrome classified under Neurological disorder in SNOMED CT International Edition

Post #342 Shortlink: https://wp.me/pKrrB-4pK

SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings.

Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020.

In SNOMED CT terminology system, disease and disorder terms are not arranged in chapters, as they are in ICD-10 and ICD-11. Instead, terms are arranged within a hierarchical relationship of parent and children concepts (or supertypes and subtypes).

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included as Synonym terms.

Chronic fatigue syndrome has historically been located under the Parent Concept: Multisystem disorder.

Multisystem disorder Parent retired for January 2018 release

In 2017, SNOMED CT terminology managers decided that the Multisystem disorder concept term was not sufficiently specific for the purposes of their system and the term was inactivated (retired) for the January 2018 release.

There had been 90 Children terms under SCTID: 281867008 Multisystem disorder (disorder) and the retirement of this parent concept had implications for all of these 90 terms — not just for Chronic fatigue syndrome and its Synonym terms.

Many of these 90 Children terms were assigned under a more specific parent but a few, including Chronic fatigue syndrome, had no new parent assigned to them.

This presented an opportunity to request a more specific parent for Chronic fatigue syndrome.

In February 2018, a formal request and rationale for adding the supertype: Disorder of nervous system was submitted.

Chronic fatigue syndrome classified under Neurological disorder for July 2018 release

Following a peer review process, the addition of the parent: Disorder of nervous system for Chronic fatigue syndrome was provisionally approved for implementation in the next release, which has been finalized and published.

SCTID: 52702003 Chronic fatigue syndrome (disorder) is now classified under supertype SCTID: 118940003 Disorder of nervous system (disorder) in the July 2018 release of the SNOMED CT International Edition.

This change will be incorporated into the next update of the U.S. Edition (in September 2018), the UK Edition (in October 2018) and other National Editions, as they release their next updates.

Download a copy of the full report

PDF: Statement on SNOMED CT and Chronic fatigue syndrome

 


SNOMED CT International Edition Release for July 2018 (v20180731) was published on the public SNOMED CT browser on July 31, 2018

Media:

GP system updated to reflect M.E. as neurological, Action for M.E., August 01, 2018

NHS to update classification system to reflect that M.E. is neurological disease, ME Association, August 06, 2018

What’s new in the ICD-11 Alpha drafting platform? (CFS, PVFS, ME)

What’s new in the ICD-11 Alpha drafting platform? (CFS, PVFS, ME)

Post #157 Shortlink: http://wp.me/pKrrB-22h

 

Screenshot: ICD-11 Alpha Browser Foundation view selected, logged in at April 10, 2012:

Chapter 6: Diseases of the nervous system

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int%2ficd%23G93.3

Apr 09 – 11:02 UTC


 

ICD-11 Beta drafting platform to launch in May?

As reported in previous posts, according to the timeline, the ICD-11 Beta drafting platform is supposed to be launching this May.

ICD-11 Revision Steering Group has yet to announce whether the Beta platform remains on target for a May release and if so, on what date it will be launched – so I cannot give you a date yet.

Like the Alpha Drafting Browser, the Beta drafting platform will be a work in progress – not a final Beta draft. The final Beta isn’t scheduled until 2014, after the ICD-11 field trials have been undertaken.

When it does launch, the Beta platform is intended to be accessible to professionals and the public for viewing.

Registered or logged in users will have greater access to content and will be able to interact with the platform to read comments, comment on proposals and make suggestions, as part of the ongoing drafting process.  

In the meantime, the publicly viewable version of the Alpha drafting platform (known as the ICD-11 Alpha Browser) can still be accessed here:

http://apps.who.int/classifications/icd11/browse/f/en

The various ICD-11 Revision Topic Advisory Groups are carrying out their draft preparation work on a separate, more complex multi-author drafting platform that is accessible only to WHO and ICD Revision personnel.

 

Alpha drafting platform

As before, the publicly viewable version of the Alpha Browser should be viewed with the following caveats in mind:

the Alpha draft is a work in progress; it is incomplete; it may contain errors and omissions; it is in a state of flux and updated daily; textual content, codes and “Sorting labels” are subject to change as chapters are reorganized and content populated; the content has not been approved by Topic Advisory Groups, Revision Steering Group or WHO.

It is possible to register, or sign into the platform using existing accounts with several third party account providers such as Google, Yahoo and myOpenID, for increased access and functionality. Once signed in, Comments and Questions can be read and PDFs of the drafts of the top level linearizations can be downloaded from the Linearization tab.

See the Alpha Browser User Guide for information on how the Alpha Browser functions:

http://apps.who.int/classifications/icd11/browse/Help/en

 

The ICD-11 “Content Model”

ICD-11 will be available in both print and online versions and unlike most chapters of ICD-10, will include descriptive content for ICD terms.

For the online version of ICD-11, all ICD entities will include a definition and a number of additional key descriptive fields – between 7 and 13 pre-defined parameters, populated according to a common “Content Model” (Content Model Reference Guide January 2011).

For example, ICD entity Title, Definition, Synonyms, Narrower Terms, Exclusions, Body Site, Body System, Signs and Symptoms, Causal Mechanisms, and possibly Diagnostic Criteria for some entities.*

*According to the iCAT User Google Group message board, these fields may have been revised since the January 2011 Content Model Reference Guide was published; Content Model parameters in the Beta draft may therefore differ from those currently displaying in the public Alpha drafting platform.

The print version will use a concise version of Definition due to space constraints.

In the Alpha Browser, not all these Content Model parameters display in the Foundation and Linearization views and not all of the parameters that have been listed for individual entities have had their draft text added yet, as some chapters are more advanced for the population of proposed content than others.

So the Alpha draft is still very patchy and many entities have no Definition and little or no other proposed content filled in.

With no “Category Discussion Notes” or “Change history” pop-up windows visible in the public version of the Alpha, the viewer cannot determine the rationales behind the reorganization of terms and hierarchies within the various chapters.

 

Chapter location and hierarchy for CFS, PVFS and (Benign) ME in ICD-11

I have been reporting since June 2010 that the proposals for ICD-11 Alpha Draft, as far as one could determine, appeared to be:

1] That a change of hierarchy had been recorded in a “Category Discussion Note”, dated May 1, 2010, between ICD-10 Title term “Postviral fatigue syndrome” and “Chronic fatigue syndrome”. (“Category Discussion Notes” and “Change History” pop-ups did display in the earlier iCAT version of the Alpha drafting platform.)

You can view a screenshot from June 2010 of that “Change history” record here:

https://dxrevisionwatch.files.wordpress.com/2010/06/change-history-gj92-cfs.png

The Definition field on the “Chronic fatigue syndrome” description panel in the current Alpha Browser is currently blank but in June 2010, the Definition had stood as in this contemporaneous screenshot:

https://dxrevisionwatch.files.wordpress.com/2010/05/2icatgj92cfsdef.png

2] That “Chronic fatigue syndrome” had been designated as an ICD-11 Title term within ICD-11 Chapter 6: Diseases of the nervous system, with the capacity for a Definition and up to 10 additional descriptive parameters.

3] That “Benign myalgic encephalomyelitis” had been specified as an Inclusion term to ICD-11 Title term “Chronic fatigue syndrome” but that the relationships between the three terms, PVFS, (B) ME and CFS had yet to be specified, as in this screenshot from June 2010:

https://dxrevisionwatch.files.wordpress.com/2010/05/2icatgj92cfsterms.png

 

What is currently showing in the Chapter 6 Foundation Component?

It isn’t possible to bring up a discrete ICD Title listing for either “Benign myalgic encephalomyelitis” or “Postviral fatigue syndrome” in either the Foundation Component or the Linearization.

In the Foundation view only, for Chapter 6: Diseases of the nervous system, “Chronic fatigue syndrome” is listed as a Title term with the ICD-10 legacy ID “ID:http://who.int/icd#G93.3”;

the Definition field is currently blank;

a list of terms has recently been added under “Synonyms”;

one term has recently been added under “Narrower Terms”.

(Note: there is a small asterisk at the end of term “Benign myalgic encephalomyelitis” which is listed at the top of the “Synonyms” list. The asterisk “Hover text” reads “This term is an inclusion term in the linearizations.”)

If you want to view the listing directly on the Browser site (note the “Comment” and “Questions” icons which open up pop-up windows next to terms for reading/commenting won’t display unless you have already registered and logged in) go here:

ICD-11 Alpha Browser Foundation view:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int%2ficd%23G93.3

ID:http://who.int/icd#G93.3

Chronic fatigue syndrome

Parent(s)

Selected cause is Remainder of diseases of the nervous system in Condensed and selected Infant and child mortality lists
Selected Cause is All other diseases in the Selected General mortality list
Selected cause is Diseases of the nervous system

Definition

This entity does not have a definition at the moment.

Synonyms

Benign myalgic encephalomyelitis *  [Ed: Hover text over asterisk reads: “This term is an inclusion term in the linearizations.”]
akureyri
akureyri disease
cfs – chronic fatigue syndrome
chronic fatigue syndrome nos   [Ed: from current proposals for ICD-10-CM, Chapter 18, R53.82]
chronic fatigue, unspecified   [Ed: from current proposals for ICD-10-CM, Chapter 18, R53.82]
epidemic neuromyasthenia
iceland disease
icelandic disease
me – myalgic encephalomyelitis
myalgic encephalomyelitis
myalgic encephalomyelitis syndrome
postviral fatigue syndrome
pvfs – postviral fatigue syndrome

Narrower Terms

neuromyasthenia

Body Site

Entire brain (body structure)
Brain structure (body structure)

Causal Mechanisms

Virus (organism)

 

What’s new in Chapter 5: Mental and behavioural disorders?

As reported in Dx Revision Watch post: http://wp.me/pKrrB-1Vx,  the category “Somatoform Disorders” in Chapter 5, Mental and behavioural disorders is currently renamed to “BODILY DISTRESS DISORDERS”, under which currently sit three new child categories:

5M0 Mild bodily distress disorder
5M1 Moderate bodily distress disorder
5M2 Severe bodily distress disorder.

Chapter 5 Linearization view:

http://apps.who.int/classifications/icd11/browse/l-m/en#/http%3a%2f%2fwho.int%2ficd%23F45

Chapter 5 Foundation view:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int%2ficd%23F45

(Click on the little grey arrows to display the child categories):

Child categories to parent “BODILY DISTRESS DISORDERS”:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int%2ficd%231905_dd0250d2_e8cd_4c48_a93f_7997cc1c8b07

BODILY DISTRESS DISORDERS

5M0 Mild bodily distress disorder
5M1 Moderate bodily distress disorder
5M2 Severe bodily distress disorder
5M3 Somatization disorder
5M4 Undifferentiated somatoform disorder
5M5 Somatoform autonomic dysfunction
5M6 Persistent somatoform pain disorder
      > 5M6.0 Persistent somatoform pain disorder
      > 5M6.1 Chronic pain disorder with somatic and psycological [sic] factors
5M7 Other somatoform disorders
5M8 Somatoform disorder, unspecified

None of these three new (proposed) categories have had any Definitions or other textual content added to the description panels on the right hand side of the Alpha Browser page since I first reported this change in February.

It is still not possible to determine what disorders ICD-11 intends might be captured by these three new (proposed) terms, should ICD-11 Revision Steering Group and WHO classification experts consider these terms to be valid constructs and approve their progression through to the Beta draft.

Because no “Change Notes” or “Change history” pop-up windows display in this version of the Alpha Drafting browser, it is not possible to determine:

whether ICD-11 is proposing to introduce three new terms – 5M0 Mild bodily distress disorder; 5M1 Moderate bodily distress disorder; 5M2 Severe bodily distress disorder, in addition to retaining existing ICD-10 terms, 5M3 thru 5M8;

how ICD Revision intends to define these (proposed) new terms at 5M0, 5M1, 5M2;

how these three (proposed) new terms would relate to the existing ICD-10 “Somatoform Disorders” categories which remain listed as child categories to “BODILY DISTRESS DISORDERS” (apart from “Hypochondriacal disorder” [ICD-10: F45.2], which is now listed as “5H0.5 Illness Anxiety Disorder” in the ICD-11 Alpha Draft).

(See Page 1 and 2 of my report: “Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?: http://wp.me/pKrrB-1Vx  )

 

References:

ICD-11 Revision: http://www.who.int/classifications/icd/revision/en/

ICD-11 Alpha Browser User Guide: http://www.who.int/classifications/icd/revision/caveat/en/index.html
Alpha Browser Foundation view: http://apps.who.int/classifications/icd11/browse/f/en#
Alpha Browser Linearization view: http://apps.who.int/classifications/icd11/browse/l-m/en#
“Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?: http://wp.me/pKrrB-1Vx

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

Shortlink Post #129: http://wp.me/pKrrB-1Fn

The fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on November 8-9, 2011.

Minutes and Committee’s Recommendations to HHS have now been posted on the CFSAC website.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) 

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Meetings page is here

               Minutes Day One CFSAC Fall 2011 meeting

               Minutes Day Two CFSAC Fall 2011 meeting

Presentations, Public Testimony and links for Videos for Day One and Day Two

 

The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.

See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

 

Recommendations out of the Fall 2011 CFSAC Meeting

CFSAC Recommendations – November 8-9, 2011

The specific recommendations articulated by the Committee are:

1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s  recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.

2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.

4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:

a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.

b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.

c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.

d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.

This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:

We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the  relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.

*Ed: Should be “Excludes1”. For definitions for “Excludes1” and “Excludes2” see Post #118

               November 2011 Recommendations Letter to the Secretary (PDF 31 KB)

               November 2011 CFSAC Recommendations Chart (PDF 138 KB)

The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).

Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.

The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.

As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).

The closing date for comments was November 18, 2011.

A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.

 

Related post

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item: 

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011

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