Updates on status of ICD-11 and changes to other classification and terminology systems

In your opinion, what AS locations would be other options.

Is there a place for text for myalgic encephalomyelitis or is it attached to the CFS text?

 

None. I would not propose retaining in either the AS General symptoms, complaints and abnormal findings (which is comparable to the ICD-10 R code chapter and the ICD-11 MG category block) or in the AD General diagnoses and diseases block.

If I were submitting further proposals, I would submit for relocating under section ND Diagnoses and diseases of neurological system.

N Neurological system
NS Symptoms, complaints and abnormal findings of neurological system
ND Diagnoses and diseases of neurological system

for consistency with ICD-10 and ICD-11.

These two ICPC-3 codes (AS05 Postviral fatigue and AS05.00 Chronic fatigue syndrome and the index term, Myalgic encephalomyelitis) are mapped to ICD-10 G93.3 and ICD-11 8E49. They could potentially be moved to the ND diagnosis codes for consistency with the ICD-10 and ICD-11 codes that they are being mapped to.

ME is currently an index term under AS05. The Description text is just a block of text that displays in a panel on the right of the classification hierarchy. (If there is a character limit for Description texts, this isn't stated in the section on how to submit proposals.)

One option would be to request assigning of a sub-code for Myalgic encephalomyelitis (currently an index term in ICPC-3) eg:

XXXX Postviral fatigue
XXXX.00 Chronic fatigue syndrome
XXXX.01 Myalgic encephalomyelitis

and continue to map all three terms to ICD-10 G93.3 and ICD-11 8E49.


The current ICPC-3 Description text:

AS05 Postviral fatigue

Description
Postviral fatigue is characterised by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer. Symptoms are not caused by ongoing exertion; are not relieved by rest; and result in a substantial reduction of previous levels of occupational, educational, social or personal activities. Minor alterations of immune, neuroendocrine, and autonomic function may be associated with postviral fatigue.
Chronic fatigue syndrome: considerable cultural variations occur in the presentation of this problem, and two main types occur, with substantial overlap. In one type, the main feature is a complaint of increased fatigue after mental effort, often associated with some decrease in occupational performance or coping efficiency in daily tasks. The mental fatiguability is typically described as an unpleasant intrusion of distracting associations or recollections, difficulty in concentrating, and generally inefficient thinking. In the other type, the emphasis is on feelings of bodily or physical weakness and exhaustion after only minimal effort, accompanied by a feeling of muscular aches and pains and inability to relax. In both types a variety of other unpleasant physical feelings is common, such as dizziness, tension headaches, and feelings of general instability. Worry about decreasing mental and bodily well-being, irritability, anhedonia, and varying minor degrees of both depression and anxiety are all common. Sleep is often disturbed in its initial and middle phases but hypersomnia may also be prominent.

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

You see why the text above needs urgent addressing, particularly by ME orgs in the six European countries where the use of ICPC-2 in primary care settings is mandatory for reasons for encounter, diagnoses and care.

 

Health care, and coding, health information management, clinical documentation industry comment on US's projected adoption of ICD-11 or a clinical modification of ICD-11:


https://libmaneducation.com/will-there-ever-be-an-icd-11-cm/

Will there ever be an ICD-11-CM?

30 September 2021 LIBMAN EDUCATION, Training the health care work force

By Mary H. Stanfill, MBI, RHIA, CCS, CCS-P, FAHIMA

"But, if we can (for the first time) simply identify a subset of ICD-11 entities from the Foundation to develop an index and tabular for use in the US (what the WHO calls a “linearization”) that could speed up adoption by several years."



ICD-11 Implementation Date

https://uasisolutions.com/insights/icd-11-implementation-date/

22 September 2021 United Audit Systems, Mary Stanfill

"Will the transition be a version update or a regulatory change?
"The need for regulatory action is one of the things that held up the move to ICD-10-CM for a decade or more. For ICD-11, the NCVHS recommended to HHS that they simplify the transition and use a sub-regulatory process, in the same way that it makes version updates to all the other named HIPAA standards. If HHS accepts this recommendation, that will also speed up implementation as ICD-11 will simply be a version update."


My understanding is that adoption of ICD-11 for mortality (cause of death) reporting would not require the rule making process and CDC considers implementation of ICD-11 for mortality use could be a relatively swift process.

 

For those interested in the US process towards adoption of ICD-11 for mortality (cause of death) and morbidity (diseases, disorders, injuries and other health conditions) reporting.

The ICD coding system is also used for international public health surveillance and statistical reporting and supports administration, quality assessment and research, public health surveillance for monitoring incidence and prevalence of diseases, data capture for safety and quality guidelines, and state health data reporting.

The ICD-10-CM morbidity classification is a HIPAA-designated medical code set, which is an essential component of all hospital and physician billing and payment processes for Medicare, Medicaid and private insurance payers. HHS regulations make its use for morbidity coding mandatory for hospitals, physician practices, and other health care provider and service settings.


The US National Committee on Vital and Health Statistics (NCVHS) held a virtual Full Committee Meeting on September 9-10, 2021


Agenda and recordings of meeting Day 1 and Day 2:

https://ncvhs.hhs.gov/meetings/full-committee-meeting-8/

Day 1:

3:15 p.m. Subcommittee on Standards

• Action: Letter to the Secretary with Recommendations for Immediate Action on ICD-11

Margaret Skurka & Valerie Watzlaf NCVHS members

Slide Presentation (Margaret Skurka & Valerie Watzlaf):

Update: Recommendations for Immediate Action on ICD-11 Subcommittee on Standards September 9, 2021:

https://ncvhs.hhs.gov/wp-content/up...on-ICD-11-Update-NCVHS-Skurka-and-Watzlaf.pdf


Transcript of meeting Day 1 (9 September, 2021):
https://ncvhs.hhs.gov/wp-content/uploads/2021/09/Transcript-Full-Committee-Meeting-Sept-9-2021.pdf

(Agenda topic: Discussion of ICD-11 and Letter to the Secretary with Recommendations for Immediate Action on ICD-11 from page 47 to page 76.)



Day 2:

2:30 p.m. Remaining Follow up from Day 1 Chair and Full Committee

• PCS follow up work
• ICD-11 letter final edits and vote [1]
• Workplan Review

Transcript of meeting Day 2 (10 September, 2021): : https://ncvhs.hhs.gov/wp-content/uploads/2021/09/Transcript-Full-Committee-Meeting-Sept-10-2021.pdf

(Agenda topic: ICD-11 letter final edits and vote from page 53 to page 68.)


1. Letter to The Honorable Xavier Becerra Secretary Department of Health and Human Services from Nick Coussoule, Chair National Committee on Vital and Health Statistics

Subject: Updated Recommendations for Immediate Action on ICD-11, September 10, 2021

PDF: https://ncvhs.hhs.gov/wp-content/up...mendations-for-HHS-Sept-10-2021-Final-508.pdf

PDF of Updated Recommendations letter to HHS also in attachment.

 

https://www.icd10monitor.com/icd-10-cm-coordination-and-maintenance-committee-time-to-comment-again

ICDMonitor, Erica E. Remer, MD, CCDS
Original story posted on: October 4, 2021

(...)

"After the list of contents on the agenda, the deadlines for comment submission are laid out. There are some codes that are being considered for implementation on April 1, 2022, and public comments on these proposed codes are due on Oct. 15. The remainder of the comments are due Nov. 15. Comments on diagnosis proposals should be sent to .

"I’m going to give you a few of my opinions here, and feel free to borrow any ideas you agree with nchsicd10CM@cdc.gov "

(...)

• Postural orthostatic tachycardia syndrome is being offered a code, G90.A. I think the acronym POTS needs to be included somewhere, either in the title as a parenthetical or as an inclusion term. We are seeing it with COVID-19, so fast-tracking it to April 1 may be in order.

• Post-viral and related fatigue syndromes: this is another COVID-19-related condition, so I suggested moving up the deadline for this one, and there should be an instruction to code U09.9* when applicable. I am not clear on what the coder does with verbiage of “post-viral chronic fatigue syndrome.” Is that G93.31 or G93.32?"

*ICD-10-CM FY release 2021

Code U09.9

CHAPTER 22 Provisional assignment of new diseases of uncertain etiology or emergency use (U00-U49)

• U09 Post COVID-19 condition
• U09.9 Post COVID-19 condition, unspecified

 

WHO-FIC Annual Network Meeting 18-22 October 2021

Master Agenda

https://cdn.who.int/media/docs/default-source/classification/who-fic-network/meetings/who-fic-network-virtual-annual-meeting-2021/master_agenda_who_fic-2021.pdf


Amongst other WHO-FIC annual meeting business, batches of outstanding ICD-11 proposals are discussed at these annual meetings by the ICD-11 CSAC Committee.* This year, these include discussion of Stillbirth definition; Coding of COVID vaccine related deaths; Update on endometriosis proposals; Questions about the placement of COVID-19 related codes in ICD-11.

*At the 2018 WHO-FIC Annual Meeting CSAC and MSAC's endorsement of ICD-11's proposals for the G93.3 legacy terms was featured.

Also the date for release of ICD-11 update: ICD-11 MMS Version: 2022.







ICD-11 is scheduled for implementation from January 01, 2022. It is unlikely that many member states will be sufficiently prepared to implement this early, though Japan is understood to be well advanced with its preparations for implementation.

The WHO has yet to publish the finalised ICD-11 equivalent to the ICD-10 "Blue Book" which will be known as the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders.

This derivative publication is primarily intended for use in specialist psychiatric settings. 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; it is intended for mental health professionals and for general clinical, educational and service use.

The CDDG does not provide diagnostic criteria. The essential features are less rigid than DSM-5’s criteria sets and allow practitioners more flexibility to use clinical discretion when making a diagnosis.


Additionally, the ICD-11 PHC has yet to be finalised and published:

The ICD-11 Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders should not be confused with the ICD-11 PHC.

The ICD-11 PHC is a revision of the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. 1996.

Since 2012, I have been reporting on the parallel development of the ICD-11 Primary Health Care (PHC) Guidelines for Diagnosis and Management of Mental Disorders (ICD-11 PHC).

ICD-11 PHC is a clinical tool written in simpler language to assist non-mental health specialists in primary care settings and non medically trained health workers, and also intended for use in low resource settings and in low- to middle-income countries.

It comprises 27-28 mental disorders considered to be most clinically relevant in primary care and low resource settings. (It is a misnomer to refer to the ICD-11 PHC as the "Primary Care version of ICD-11" since it contains just 27-28 mental disorders and no general medical diseases or conditions.)

It is important to note that like the ICD-10 PHC, this revised diagnostic and management guideline won't be mandatory for use by member states, although the WHO hopes this revised edition will have greater clinical utility than the ICD-10 PHC (1996).

The WHO intends to make the ICD-11 PHC publication, once completed, free to download by anyone. There is currently no date available for its projected finalization or release.

The revision is the responsibility of the WHO Department of Mental Health and Substance Abuse advised by an external advisory group — the Primary Care Consultation Group (PCCG) which is co-chaired by Prof Sir David Goldberg*; Vice-chairs: Dr Michael Klinkman and WHO's, Dr Geoffrey Reed.


The full draft texts for the 27-28 mental disorder categories proposed for inclusion in the ICD-11 PHC have not been made available for public scrutiny, but a number of progress papers, field trial evaluations and presentations have been published since 2010.

25 of the 27-28 mental disorder categories proposed for inclusion in the ICD-11 PHC have equivalence with mental disorder classes within the core ICD-11's Chapter 06.

ICD-11 PHC is proposed to include a disorder category called "Bodily stress syndrome (BSS)" which replaces ICD-10 PHC's "F45 Unexplained somatic complaints/medically unexplained symptoms" and "F48 Neurasthenia" categories.

This proposed "Bodily stress syndrome (BSS)" diagnosis has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). "Bodily stress syndrome (BSS)" does not have direct equivalence to a diagnostic construct in the core ICD-11.

The ICD-11 PHC's "Bodily stress syndrome (BSS)" requires at least 3 persistent, medically unexplained symptoms, over time, of cardio-respiratory, gastrointestinal, musculoskeletal, or general symptoms of tiredness and exhaustion, that result in significant distress or impairment.

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. So this (non mandatory) 27-28 mental disorder guideline continues to needs very close scrutiny.

For the mandatory core ICD-11 classification, the WHO is going forward with the differently conceptualized, Bodily distress disorder (BDD), which has close alignment with DSM-5's Somatic symptom disorder, and for which exclusions for Postviral fatigue syndrome (8E49); Chronic fatigue syndrome (8E49); and Myalgic encephalomyelitis (8E49) were secured in January 2020.

There is currently no published ETA for release of either of these publications. But WHO is aiming to release the CDDG by the end of this year.


*Prof Sir David Goldberg (now in his mid 80s) also chaired the working group for the development of ICD-10 PHC (1996). Dr Michael Klinkman is a GP who represents WONCA (World Organization of Family Doctors) and current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development and update of the WHO endorsed, ICPC-2 (International Classification of Primary Care).

 

[See also previous Post #526 for WHO-FIC WHO-FIC Annual Network Meeting 18-22 October 2021 Master Agenda]

https://cdn.who.int/media/docs/defa...-meeting-2021/who-fic_booklet_poster_2021.pdf

WHO-FIC 2021 VIRTUAL ANNUAL MEETING
POSTER BOOKLET
Classifications and Terminologies Unit
18 - 22 October 2021


Poster Submissions & Topics, page 2

[Selected Posters]

Classification and Statistics Advisory Committee (CSAC) Annual Report 2021, page 5

Australian Collaborating Centre Annual Report 2021 page 18

UK WHO-FIC Collaborating Centre Annual Report 2021, Authors: Lynn Bracewell1, Myer Glickman2. NHS Digital1, Office for National Statistics2, page 19

Canadian Collaborating Centre Annual Report 2020-2021, page 30

Report from the German Collaborating Centre (BfArM), page 32

Canadian WHO Collaborating Centre for Classification, Terminology and Standards, page 34

Rare diseases in ICD-11: advancement of the Orphanet/ICD-11 alignment and proposal of a collaborative enrichment framework, page 46

Implementation of WHO ICD-10 emergency codes for COVID-19, page 52

Clarifying the role of terminologies within WHO-FIC, page 82

 

https://news.bloomberglaw.com/healt...s-burden-of-mystery-illness-few-doctors-treat

Long Covid Doubles Burden of Mystery Illness Few Doctors Treat
Oct. 14, 2021, 10:36 AM

See Post: https://www.s4me.info/threads/updat...-terminology-systems.3912/page-26#post-377459

for transcript of discussion with NCHS's Traci Ramirez around coding of Long Covid in the context of proposals for PVFS, ME, CFS coding at the NCHS C & M Committee meeting, 14-15 September 2021.

 

I have today submitted this comment to NCHS on the request for addition of Postural orthostatic tachycardia syndrome to the ICD-10-CM Tabular List:

My comment can also be read in this PDF: bit.ly/3bm6SD8


Comment on Request: Postural orthostatic tachycardia syndrome
(Page 167, Diagnosis Codes agenda, ICD-10-CM Coordination and Maintenance Committee Meeting, September 14-15, 2021)

October 28, 2021


Creation of a unique code for Postural orthostatic tachycardia syndrome within the category G90 has been requested by Jeffrey R. Boris, MD LLC (Pediatric Cardiologist Medical Advisory Board, Dysautonomia International) and Lauren Stiles, JD (Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University).

I write in support of proposed Tabular Modifications:

G90 Disorders of autonomic nervous system

New code G90.A Postural orthostatic tachycardia syndrome
Add Chronic orthostatic intolerance
Add Postural tachycardia syndrome


I also support addition of the acronym “POTS” in whatever format required by ICD-10-CM conventions, eg, in square brackets at the end of the code title:


New code G90.A Postural orthostatic tachycardia syndrome [POTS]
Add Chronic orthostatic intolerance
Add Postural tachycardia syndrome

or under inclusions, in square brackets at the end of the fully specified term:

New code G90.A Postural orthostatic tachycardia syndrome
Add Postural orthostatic tachycardia syndrome [POTS]
Add Chronic orthostatic intolerance
Add Postural tachycardia syndrome


I would not support the acronym “POTS” being listed under inclusions without the fully specified entity spelt out in full, as this would not conform to ICD-11 conventions [1].

The requesters have presented a robust rationale for creation of a unique code for Postural orthostatic tachycardia syndrome within ICD-10-CM Tabular List.

The addition of a unique code will also benefit other disease populations, for example, patients with COVID-19 related conditions or patients with Myalgic encephalomyelitis who have also been diagnosed with Postural orthostatic tachycardia syndrome.

The entity, Postural orthostatic tachycardia syndrome was assigned a unique code in the forthcoming ICD-11 MMS from at least August 2016. Inclusion in ICD-11 MMS sets a precedent for addition to ICD-10-CM, ICD-10-CA, ICD-10-AM and other national modifications of ICD-10 [2].

The Fully Specified Name (FSN), Postural orthostatic tachycardia syndrome (disorder), is already included in SNOMED CT International Edition and the SNOMED CT US Edition [3].


References:

1 The convention for handling acronyms in ICD-11: “Acronyms may never be used for titles of categories. They should be added as synonyms to the appropriate spelt out disease entity thus facilitating identification of the relevant cases and categories.” Source: ICD-11 Content Model

For example, acronyms in ICD-11 do not appear as, or prefixed by, code titles but are listed under synonyms to their respective code titles, using this format:

ARC - [aids-related complex]
COPD - [chronic obstructive pulmonary disease]
SIDS - [sudden infant death syndrome]
CFS - [chronic fatigue syndrome]
ME - [myalgic encephalomyelitis]​

2 ICD-11 for Mortality and Morbidity Statistics (Version: 05/2021), Retrieved: October 28, 2021:
8D89.2 Postural orthostatic tachycardia syndrome
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1533647472

3 SNOMED CT United States Edition Release 2021-09-01, Retrieved: October 28, 2021:
SCTID: 371073003 Postural orthostatic tachycardia syndrome (disorder)
https://browser.ihtsdotools.org/?pe.../SNOMEDCT-US/2021-09-01&release=&languages=en


Suzy Chapman, Dorset, UK
No affiliations or COIs to declare. Primary carer of adult family member with long-term medical condition; advocate; owner of Dx Revision Watch.

https://dxrevisionwatch.com

 

https://twitter.com/user/status/1454804417706971138

 

The Nightingale Research Foundation, Canada, has published a position paper robustly opposing the proposals presented at the ICD-10-CM Coordination and Maintenance Committee Meeting, September 14-15, 2021:

Nightingale Position on Proposed Changes to U.S. ICD Coding
Byron Hyde MD

October 20121

https://mcusercontent.com/174d33a5b...c3c7724c1/DiscussionPaper_October_2021.01.pdf

"The following associations are attempting to obtain a new U.S. ICD-CM Diagnosis Code number for an imaginary condition referred to as ME/CFS. They include (1) M.E. Action (USA), (2) The Open Medicine Foundation (3) Solve M.E./CFS Initiative, (4) The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, IACFS/ME (5) The Massachusetts M.E./CFS & FM Association, (6) Pandora Organization, and (7) the Minnesota ME/CFS Alliance. The Nightingale Research Foundation hereby submits a strong objection to this proposal. There are two main components to our objection:​

"There is an unfortunate inclusion of ME with Chronic Fatigue Syndrome (CFS), since CFS does not exist as a medical or diagnostic condition. CFS is only a symptom based concept without any diagnostic medical or scientific tests or criteria to support such a medical or scientific diagnosis..."

"Since there is no definable disease known as either CFS or CFS/ ME, giving M.E./CFS a code number would be scientifically immoral. This paper explains the history and rationale of Nightingale’s objection..."​

The full position paper can be read here and has been mailed out in the Nightingale Research Foundation October Newsletter

 

A reminder that if you are planning to submit feedback on the proposals of the 7 US orgs and the alternative proposals presented by NCHS*, the deadline for receipt of comments is November 15.

Comments on the diagnosis proposals presented at the September 14-15, 2021 ICD-10-CM Coordination and Maintenance Committee meeting should be sent to the following email address:

nchsicd10CM@cdc.gov


*https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf
Page 169

 

Some context for those planning on submitting comments on the proposal for the US version of the ICD-10...

Bottom line: US patients with ME/CFS are invisible in the electronic records used in disease tracking and research because they are coded in ICD-10-CM as having the symptom of unspecified chronic fatigue that could be due to any cause. It’s a mess and there’s no simple solution. But the US must find a way to resolve this coding problem so it can finally track all US patients with ME/CFS, including new cases that may develop following COVID.

The details:

1. When the US implemented its ICD-10-CM in 2015, it unilaterally reclassified CFS to the symptom chapter and made it equivalent to the symptom of "chronic fatigue, unspecified," code R53.82. In the ICD-10 and ICD-11, ME, CFS, and postviral fatigue syndrome are all classified in the neurological chapter.

2. The term “ME/CFS” has been adopted by US federal agencies and a number of US medical education providers and clinical guidance providers. But "ME/CFS" is not listed in the ICD-10-CM (or in any ICD.) Instead, US doctors use the diagnosis CFS and patients end up with “chronic fatigue, unspecified” in their charts. Doctors could diagnose ME but very few doctors do.

3. As a result, US people with ME/CFS are invisible and not counted – invisible to mortality and morbidity tracking, in research using electronic health records, and in data analytics of e.g. health utilization costs or disease burden.

4. This has always been a huge problem but is now a crisis because the US cannot track any ME/CFS cases that develop following COVID.

5. To make forward progress, the US organizations requested that ME/CFS be added to the US ICD-10-CM, that separate subcodes be created since PVFS is always postviral and ME may not be, and that the lead term be expanded to allow for non-viral triggers (e.g. as with giardia in Norway)

6. NCHS proposed additional changes including moving CFS back to the neurological chapter (as done in ICD-10), making ME/CFS the lead term with ME and CFS as inclusions, and adding the term SEID (because US doctors have used it).

 

A reminder of the alternative proposal NCHS is recommending:

ICD-10 Coordination and Maintenance Committee Meeting, September 14-15, 2021.

Diagnosis Agenda: https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

Pages 169-172:


NCHS recommendation in sum:

Revise the existing G93.3 code title to:

G93.3 Postviral and related fatigue syndromes


Create separate sub-codes for:

G93.31 Postviral fatigue syndrome

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome [new ICD-10-CM code title term]

Chronic fatigue syndrome [new ICD-10-CM inclusion term]
ME/CFS [new ICD-10-CM inclusion term]
Myalgic encephalomyelitis [inclusion term, "Benign" prefix removed]​

G93.39 Other post infection and related fatigue syndromes [new ICD-10-CM code title term]


Delete Chronic fatigue syndrome NOS from the R53.82 codes

Add Systemic exertion intolerance disease [SEID] to the Index, coded to the new G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome code title term


The NCHS recommendation is set out in full on Page 171-172:

 

In September, 7 US orgs presented proposals for radical changes to the ICD-10-CM G93.3 and R53.82 codes (p169 Diagnosis Agenda | Presentation slides).

NCHS presented an alternative set of proposals (p171 Diagnosis Agenda)


7 reasons why I can't support either proposal:

Feedback on proposals for Postviral and Related Fatigue Syndromes, Suzy Chapman

https://dxrevisionwatch.files.wordp...n-postviral-and-related-fatigue-syndromes.pdf

or

https://bit.ly/2ZYKAVi

 

ME International's response to the proposed change to the ICD codes is as follows: (I am a board member at ME International & participated in writing this response.)

ME International’s response to a request for input regarding the proposal to make changes to Postviral Fatigue Syndromes (G93.3) presented at the Sept 15, 2021 meeting of the ICD-10 Coordination and Maintenance Committee Meeting.

ME INTERNATIONAL SUPPORTS THE FOLLOWING CHANGE:

• Removal of Benign from Benign Myalgic Encephalomyelitis

ME INTERNATIONAL REJECTS THE FOLLOWING:

• Change of G93.3 label
• Moving Myalgic Encephalomyelitis to G93.32
• Moving Chronic Fatigue Syndrome to G93.32
• Adding ME/CFS and myalgic encephalomyelitis/chronic fatigue syndrome to G93.32
• Adding SEID to Index terms

The reasoning behind these decisions is explained in the submission but a few key things are as follows:

ME International’s position is that myalgic encephalomyelitis is a complex, acquired multisystemic disease apart from CFS and ME/CFS, that all patients need to be screened for ME in accordance with the ME International Consensus Primer (ME IC Primer), and all research labeled “ME” use the ME International Consensus Criteria (ME-ICC). ME International agrees that there is a problem with the ME/CFS label.

The proposal presented was to give ME/CFS its own ICD code. Here ME International will offer an alternate solution which will require minimal changes to the ICD-10-CM coding. That solution involves educating doctors that proper screening for ME is needed before giving a diagnosis code of either G93.3 or R53.82.

This is done by using the ME IC Primer in order to thoroughly screen patients to determine what ICD code is appropriate, leading to a decision about whether a patient should receive the ME G93.3 code or the CFS R53.82 code. This approach is explained by the ME IC Primer authors on page ii with the following statement.

“Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

ME International’s goal to “LEAVE NO ONE BEHIND” is accomplished by keeping individual ICD codes for ME and CFS. Keeping ME and CFS with separate ICD codes leads to better understanding that these separate patient groups deserve screening and accurate diagnosis. Most importantly, people need to be able to receive an appropriate diagnosis in order to get appropriate treatment. Currently there are millions of undiagnosed and untreated patients. All patients need to be thoroughly screened as recommended in the ME IC Primer.

Here is link to the blog which includes link to the 10 page response explaining this position.
https://www.me-international.org/blogs/clarity-for-all

I think it important to note here that this is specific to the US coding system, but that the overall issue of different patient groups being lumped together leading to inappropriate treatment for those with ME is a worldwide issue.

 

Extract from my feedback submission (pages 3-5):

3 Creation of a new ICD entity: “Myalgic encephalomyelitis/chronic fatigue syndrome”

Both sets of proposals recommend adding a new entity to ICD-10-CM’s Tabular List: “Myalgic encephalomyelitis/chronic fatigue syndrome” and the acronym “ME/CFS”.

This hybrid term is not coded for in the WHO’s ICD-10, in ICD-11, or in any national modification of ICD-10. Nor is the term included in SNOMED CT terminology system.

The convention for ICD-10 is to classify mutually exclusive, machine readable entities.

NCHS Option 2 proposes to conjoin two existing ICD entities, “myalgic encephalomyelitis” and “chronic fatigue syndrome” to form a new code title, “Myalgic encephalomyelitis/chronic fatigue syndrome”, whilst retaining the two existing ICD entities as inclusion terms [1].

I question whether conjoining two existing ICD terms aligns with ICD-10 conventions.

NCHS Option 2 proposes revising the existing code title: G93.3 Postviral fatigue syndrome to G93.3 Postviral and related fatigue syndromes and to create separate sub-codes for Postviral fatigue syndrome and new code title, “Myalgic encephalomyelitis/chronic fatigue syndrome”.

Chronic fatigue syndrome; Myalgic encephalomyelitis; and conjoined acronym, ME/CFS are proposed to be listed as inclusions under the new G93.32 title code (see also Fig 3):

G93.3 Postviral and related fatigue syndromes

G93.31 Postviral fatigue syndrome

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome

Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis​

Systemic exertion intolerance disease [SEID] is proposed to be indexed to the G93.32 code title.

The existing inclusion term: Chronic fatigue syndrome NOS under R53.82 Chronic fatigue, unspecified is proposed to be deleted from the Tabular List.

Org Option 1 also proposes revising the existing code title: G93.3 Postviral fatigue syndrome to G93.3 Postviral and related fatigue syndromes and to create separate sub-codes for Postviral fatigue syndrome and Myalgic encephalomyelitis, with Myalgic encephalomyelitis/chronic fatigue syndrome and ME/CFS as inclusions under new sub-code G93.3x Myalgic encephalomyelitis [2]:

G93.3 Postviral and related fatigue syndromes

G93.3x Postviral fatigue syndrome

G93.3x Myalgic encephalomyelitis

Myalgic encephalomyelitis/chronic fatigue syndrome
ME/CFS​

‘[Org Option 1] did not make recommendations regarding the term “chronic fatigue syndrome” because of the lack of consensus on earlier proposals on how this should be addressed.’ Nor does Org Option 1 make recommendations for code R53.82 Chronic fatigue syndrome NOS.

NCHS is authorised by the WHO to develop and maintain an adaptation of ICD-10 for use in morbidity coding. All modifications to ICD-10 must conform to WHO conventions for ICD.

Whilst I welcome creation of unique sub-codes for Postviral fatigue syndrome and Myalgic encephalomyelitis (or creation of unique sub-codes for Postviral fatigue syndrome; Myalgic encephalomyelitis; and Chronic fatigue syndrome, were separate sub-codes for all three terms under consideration), I cannot support either of these two proposals.

Although the term, “Myalgic encephalomyelitis/chronic fatigue syndrome” and acronym “ME/CFS” are commonly used by some patients, patient organisations and more recently, by some federal agencies, I do not consider conjoining two existing ICD-10 and ICD-11 entities to form a single term to be valid in the context of ICD classificatory conventions.

I am concerned that coding all the following terms to the same ICD-10-CM sub-code, will result in confusion for existing patients, new patients, clinicians, allied health professionals and coding industry professionals. There will also be implications for data collection, analysis, and data integrity, and for research utility, patient selection etc:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome

Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis​

Index term: Systemic exertion intolerance disease [SEID]

I have particular concerns for the potential for unintended consequences for patients with an existing diagnosis of R53.82 Chronic fatigue syndrome NOS.

There was no useful discussion at the September meeting about what would happen to those patients currently assigned the R53.82 code if “Chronic fatigue syndrome NOS” is deleted from R53.82: will that leave these patients orphaned under R53.82 Chronic fatigue, unspecified?

Will patients need to contact their clinicians to request their diagnosis codes are revised from R53.82 to G93.32? What education will providers receive about implementing a code change?

Has NCHS carried out assessment for unintended consequences for medical insurance, determination of disability benefits, provision of home and workplace adaptations and educational accommodations for those patients already coded to R53.82 or assessed the implications for the types of medical investigations, tests and treatments that clinicians are prepared to consider and which insurers are prepared to fund for those patients with an historical diagnosis of R53.82?

Did NCHS consider relocating Chronic fatigue syndrome NOS under the proposed G93.32 sub-code, or creating an additional sub-code under the G93.3 block for Chronic fatigue syndrome and Chronic fatigue syndrome NOS? If relocation was considered and rejected, what was the rationale for recommending relocating both these terms under a G93.3 sub-code in September 2018, but not doing so for this most recent proposal? (See Section 5.)


References:

1 ICD-10-CM Coordination and Maintenance Committee Meeting, September 14-15, 2021. Diagnosis
Agenda, 169–172: https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

2 Presentation slides: Postviral and Related Fatigue Syndromes: https://bit.ly/31v1Nq9

[Extract ends]

Copy of full feedback submission here: https://dxrevisionwatch.files.wordp...n-postviral-and-related-fatigue-syndromes.pdf

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If you have concerns about this proposed restructure of the ICD-10-CM G93.3 and R53.82 codes, you have until November 15 to submit comments to

nchsicd10CM@cdc.gov

 

I would have preferred to have seen this proposed restructure:


G93.3 Postviral and related fatigue syndromes (though I am not happy about the inclusion of the words "fatigue" and "syndrome" in the name of this proposed revision to the G93.3 class)

G93.31 Postviral fatigue syndrome​

G93.32 Myalgic encephalomyelitis [ME]​

G93.33 Chronic fatigue syndrome [CFS]

Chronic fatigue syndrome NOS*​

G93.39 Other post infection and related fatigue syndromes (though I am not happy about the inclusion of the words "fatigue" and "syndrome" in the name of this proposed sub-code)



*NOS = “Not otherwise specified” This abbreviation is the equivalent of unspecified.

ICD-10-CM Official Guidelines for Coding and Reporting FY 2021 (October 1, 2020 - September 30, 2021)
https://dxrevisionwatch.files.wordpress.com/2020/07/10cmguidelines-fy2021.pdf

 

ICD-10-CM Official Guidelines for Coding and Reporting FY 2021
(October 1, 2020 - September 30, 2021)
https://dxrevisionwatch.files.wordpress.com/2020/07/10cmguidelines-fy2021.pdf

Selected extracts:

(...)

11. Inclusion terms
List of terms is included under some codes. These terms are the conditions for which that code is to be used. The terms may be synonyms of the code title, or, in the case of “other specified” codes, the terms are a list of the various conditions assigned to that code. The inclusion terms are not necessarily exhaustive. Additional terms found only in the Alphabetic Index may also be assigned to a code.

12. Excludes Notes*
The ICD-10-CM has two types of excludes notes. Each type of note has a different definition for use but they are all similar in that they indicate that codes excluded from each other are independent of each other.

a. Excludes1
A type 1 Excludes note is a pure excludes note. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is used when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

An exception to the Excludes1 definition is the circumstance when the two conditions are unrelated to each other. If it is not clear whether the two conditions involving an Excludes1 note are related or not, query the provider. For example, code F45.8, Other somatoform disorders, has an Excludes1 note for "sleep related teeth grinding (G47.63)," because "teeth grinding" is an inclusion term under F45.8. Only one of these two codes should be assigned for teeth grinding. However psychogenic dysmenorrhea is also an inclusion term under F45.8, and a patient could have both this condition and sleep related teeth grinding. In this case, the two conditions are clearly unrelated to each other, and so it would be appropriate to report F45.8 and G47.63 together.

b. Excludes2
A type 2 Excludes note represents “Not included here.” An excludes2 note indicates that the condition excluded is not part of the condition represented by the code, but a patient may have both conditions at the same time. When an Excludes2 note appears under a code, it is acceptable to use both the code and the excluded code together, when appropriate.

*Ed: Note that the WHO's ICD-10 has just one type of Excludes note.
​

(...)

19. Code assignment and Clinical Criteria
The assignment of a diagnosis code is based on the provider’s diagnostic statement that the condition exists. The provider’s statement that the patient has a particular condition is sufficient. Code assignment is not based on clinical criteria used by the provider to establish the diagnosis.

​

(...)

B. General Coding Guidelines

1. Locating a code in the ICD-10-CM
To select a code in the classification that corresponds to a diagnosis or reason for visit documented in a medical record, first locate the term in the Alphabetic Index, and then verify the code in the Tabular List. Read and be guided by instructional notations that appear in both the Alphabetic Index and the Tabular List.

It is essential to use both the Alphabetic Index and Tabular List when locating and assigning a code. The Alphabetic Index does not always provide the full code. Selection of the full code, including laterality and any applicable 7th character can only be done in the Tabular List. A dash (-) at the end of an Alphabetic Index entry indicates that additional characters are required. Even if a dash is not included at the Alphabetic Index entry, it is necessary to refer to the Tabular List to verify that no 7th character is required.
​

(...)

4. Signs and symptoms
Codes that describe symptoms and signs, as opposed to diagnoses, are acceptable for reporting purposes when a related definitive diagnosis has not been established (confirmed) by the provider. Chapter 18 of ICD-10-CM, Symptoms, Signs, and Abnormal Clinical and Laboratory Findings, Not Elsewhere Classified (codes R00.0 - R99) contains many, but not all, codes for symptoms. See Section I.B.18 Use of Signs/Symptom/Unspecified Codes

(...)

18. Use of Sign/Symptom/Unspecified Codes
Sign/symptom and “unspecified” codes have acceptable, even necessary, uses. While specific diagnosis codes should be reported when they are supported by the available medical record documentation and clinical knowledge of the patient’s health condition, there are instances when signs/symptoms or unspecified codes are the best choices for accurately reflecting the healthcare encounter. Each healthcare encounter should be coded to the level of certainty known for that encounter.

If a definitive diagnosis has not been established by the end of the encounter, it is appropriate to report codes for sign(s) and/or symptom(s) in lieu of a definitive diagnosis. When sufficient clinical information isn’t known or available about a particular health condition to assign a more specific code, it is acceptable to report the appropriate “unspecified” code (e.g., a diagnosis of pneumonia has been determined, but not the specific type). Unspecified codes should be reported when they are the codes that most accurately reflect what is known about the patient’s condition at the time of that particular encounter. It would be inappropriate to select a specific code that is not supported by the medical record documentation or conduct medically unnecessary diagnostic testing in order to determine a more specific code.

[Extracts end]

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

The most recent update of the WHO's International edition of ICD-10 is ICD-10 Version: 2019, released in January 2020.

A browser version of the Tabular List (which includes a database for Index terms) is here: https://icd.who.int/browse10/2019/en#/

No PDF versions of the 2019 Tabular List and Index are available.

WHO has stated that this will be the final update in the life of ICD-10 and that updates will not be supported beyond this release other than for addition of emergency codes for significant new viruses and for correction of typos and errors.

Note that ICD-10 Version: 2019 has not yet been adopted by NHS England.

No decision has been announced yet whether NHS England will adopt ICD-10 Version: 2019 or skip the final update of ICD-10 in favour of migrating directly from Version: 2016 (the current mandatory version) to ICD-11, at some point in the future. No roadmap for adoption of ICD-11 by NHS England has been released yet.


ICD-10 Version: 2016:

PDF versions of ICD-10 (Fifth edition v 2016) Volume 1: Tabular List and Volume 3: Alphabetical Index are also available as free downloads from the WHO’s IRIS document archive: https://apps.who.int/iris/handle/10665/246208

ICD-10 Volume 1 | Tabular List of inclusions and four-character subcategories 5th Edition 2016 [PDF]

ICD-10 Volume 2 | Instruction Manual 5th Edition 2016 [PDF]

ICD-10 Volume 3 | Alphabetical Index 5th Edition 2016 [PDF]


Note that the WHO's ICD does not classify, code or index the composite terms

Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome/myalgic encephalomyelitis
ME/CFS
CFS/ME


For ICD-11, the acronyms "ME"; "CFS"; and "PVFS" are listed under Synonyms/Index Terms to the 8E49 Postviral fatigue syndrome code title, using this ICD-11 convention format:

• CFS - [chronic fatigue syndrome]
• ME - [myalgic encephalomyelitis]
• PVFS - [postviral fatigue syndrome]

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

ICD-10 Volume 2 | Instruction Manual 5th Edition 2016 [PDF]


Extract:

3.1.2 Use of the Tabular list of inclusions and four-character subcategories
Inclusion terms Within the three- and four-character rubrics,1 a number of other diagnostic terms are usually listed. These are known as ‘inclusion terms’ and are given, in addition to the title, as examples of the diagnostic statements to be classified to that rubric. They may refer to different conditions or be synonyms. They are not a subclassification of the rubric.

Inclusion terms are listed primarily as a guide to the content of the rubrics. Many of the items listed relate to important or common terms belonging to the rubric. Others are borderline conditions or sites listed to distinguish the boundary between one subcategory and another. The lists of inclusion terms are by no means exhaustive and alternative names of diagnostic entities are included in the Alphabetical index, which should be referred to first when coding a given diagnostic statement.

 

BMC Medical Informatics and Decision Making volume 21, Article number: 206 (2021)

Review Open Access Published: 09 November 2021

ICD-11: an international classification of diseases for the twenty-first century

• James E. Harrison, Stefanie Weber, Robert Jakob & Christopher G. Chute

Abstract
Background
The International Classification of Diseases (ICD) has long been the main basis for comparability of statistics on causes of mortality and morbidity between places and over time. This paper provides an overview of the recently completed 11th revision of the ICD, focusing on the main innovations and their implications.

Main text
Changes in content reflect knowledge and perspectives on diseases and their causes that have emerged since ICD-10 was developed about 30 years ago. Changes in design and structure reflect the arrival of the networked digital era, for which ICD-11 has been prepared. ICD-11’s information framework comprises a semantic knowledge base (the Foundation), a biomedical ontology linked to the Foundation and classifications derived from the Foundation. ICD-11 for Mortality and Morbidity Statistics (ICD-11-MMS) is the primary derived classification and the main successor to ICD-10. Innovations enabled by the new architecture include an online coding tool (replacing the index and providing additional functions), an application program interface to enable remote access to ICD-11 content and services, enhanced capability to capture and combine clinically relevant characteristics of cases and integrated support for multiple languages.

Conclusions
ICD-11 was adopted by the World Health Assembly in May 2019. Transition to implementation is in progress. ICD-11 can be accessed at icd.who.int.



Full review PDF: https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-021-01534-6.pdf

and attached