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

For completeness, this is how

U09.9 Post COVID-19 condition, unspecified
> Post-acute sequela of COVID-19


is coded for in the ICD-10-CM Tabular List 2024:



Edited to add: I assume that if these proposals are approved and implemented the following terms would be inserted under chronic respiratory failure (J96.1-) in alphabetical order: post-exertional malaise (R68.85); myalgic encephalomyelitis/chronic fatigue syndrome (G93.32).


The patient made term, "Long Covid" has not been added to the Tabular List but it is included in the Index as "long [COVID-19]", and "long haul [COVID-19]" and is coded to U09.9. Note the Index is set out so as not to have to keep repeating a term (in this case "COVID-19").


Index:



I don't know why one or more of the LC advocacy groups has not submitted for having the term "Long COVID" added to the Tabular List, citing ICD-11 as precedent.

In ICD-11, "long COVID" is listed under Synonyms under RA02 Post COVID-19 condition and is coded to RA02; I believe it was added by the WHO in 2020:

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/2024855916

RA02 Post COVID-19 condition

Synonyms

• postCOVID condition
• post-COVID-19 condition
• long COVID

 

I looked into various ways Drs might utilize the PEM code that would interfere with getting an ME (ME/CFS & CFS) diagnosis of G93.32 when I originally looked into this proposal. I created this chart. See article here: https://meglobalchronicle.wordpress...myalgic-encephalomyelitis-me-using-icd-codes/

Chart does NOT include this most concerning aspect from the 2nd proposal. This question raised by DX Rev Watch is probably a more likely scenario for a doctor offering a new diagnosis for someone who comes in "post viral" with PEM.

I would not expect a doctor or a patient to see a need to switch from G93.31 or G93.39 + R68.85. Most doctors & patients have very little understanding that the ME diagnosis offers insight into the neurological, immunological and cardiac issues as described in the IC Primer. The primary focus is on behavior modification of pacing, diet, supplements, etc. Once given a post viral + PEM code, there is little incentive to update to G93.32. Switching to G93.32 would not offer any more coverage for testing or treatments from insurance. In my experience doctors only change codes if it will bring better insurance coverage.

In order to obtain more treatments that might be helpful they would just add more codes, like the new POTS code, in order to obtain more effective treatments.

This road looks to me like it will lead to the G93.32 code being of little use to Drs or patients.

 

The American Health Information Management Association (AHIMA)* has published its feedback on ICD-10-CM proposals for consideration for implementation in October 2024 and also comments on proposals for consideration for implementation in April 2004:

AHIMA's comments on the PEM proposal can be found below and on pages 6 and 7 of this PDF:

https://www.ahima.org/media/mstmqj4...ctober-1-2024-implementation-final_signed.pdf

Post-exertional Malaise/Post-exertional Symptom Exacerbation

While we support the proposal for a new symptom code for post-exertional malaise, we recommend that the code be placed in subcategory R53.8, Other malaise and fatigue, rather than in subcategory R68.8, Other general symptoms and signs. It does not make sense to create the new code in subcategory R68.8 when category R53 specifically classifies types of malaise and fatigue. Also, by not locating post-exertional malaise with other types of malaise and fatigue, it may be miscoded to code R53.83, Other fatigue. If the new code is created in subcategory R68.8, an Excludes1 note should be added under subcategory R53.8.

To prevent misuse of the new code, we recommend that Excludes1 notes be added for types of malaise and fatigue classified to other codes in the classification that might be confused with the type of malaise classified to the new code. For example, fatigue due to excessive exertion is classified to code T73.3.

​

*"AHIMA is a global nonprofit association of health information (HI) professionals. AHIMA represents professionals who work with health data for more than one billion patient visits each year. AHIMA’s mission of empowering people to impact health drives our members and credentialed HI professionals to ensure that health information is accurate, complete, and available to patients and providers. Our leaders work at the intersection of healthcare, technology, and business, and are found in data integrity and information privacy job functions worldwide."

 

The next meeting of the ICD-10-CM Coordination and Maintenance Committee is scheduled for March 19-20, 2024.

The Tentative Agenda has been released:

https://cdc.gov/nchs/data/icd/Tentative-Agenda-March-2024.pdf

Topic 24: Post-exertional malaise

So the proposal for adding a new code for PEM, first discussed at the March '23 meeting and re-presented with significant modifications in Sept. '23, is back on the agenda for discussion at this forthcoming March meeting.

I am not aware whether the PLRC has posted an updated proposal or whether we will have to wait until the full Topic Packet is released just before the meeting, in March, to review modified proposals.

If PLRC has more information on revised proposals I will update this thread.


https://twitter.com/user/status/1761346917651402996



Dx Revision Watch
@dxrevisionwatch

@LisaAMcCorkell
@patientled
In the interests of transparency, are the revised proposals for adding a code for PEM being presented at this forthcoming March C & M meeting going to be publicly posted by PLRC prior to the March meeting?

 

Some uncertainty here:

https://twitter.com/user/status/1761432984899764597



Lisa McCorkell
@LisaAMcCorkell

To my knowledge, a code for PEM will not be presented at the March meeting. That must’ve been decided after the tentative agenda was drafted. I assume that will be reflected in the final agenda, but questions on that can be directed to CDC

4:48 PM · Feb 24, 2024

 

PEM was not listed in the Tentative Agenda as published on 5 February in the Federal Register: https://federalregister.gov/documents/2024/02/05/2024-02178/national-center-for-health-statistics-meeting-of-the-icd-10-coordination-and-maintenance-committee

But is included (at Item 24) in the more expansive list of Topics in the Tentative Agenda PDF, as posted on the CDC's C & M Meeting page: https://cdc.gov/nchs/icd/icd10cm_maintenance.htm

CDC's Traci Ramirez is being approached for clarification.

 

I have received a response from CDC's Traci Ramirez who has clarified that the proposal for PEM will not be included at the March C & M meeting.


No explanation as to why it has been included in the Tentative Agenda.

So, either:

1 The proposal has been rejected and there are no plans to re-present it at a future meeting.

Or:

2 No decision has been made; the proposal remains under consideration and may or may not be re-presented at a future meeting (but not at this forthcoming March meeting).

Or:

3 The proposal has been approved and will likely be implemented for the October '24 release. (October releases of ICD-10-CM are usually published early to mid June.)


That's all I can tell you. I cannot confirm whether PLRC has been informed of the status of a decision on this proposal other than that it isn't scheduled for re-presentation at the March meeting.

 

Update from Patient-Led Research Collaboration on status of proposal to add a code for PEM/PESE to the Symptoms chapter of ICD-10-CM:

https://twitter.com/user/status/1766160093035233684



Patient-Led Research Collaborative
@patientled

13m

Update: Unfortunately the ICD-10-CM code for PEM/PESE was not approved by CDC for implementation in Oct 2024. It will not be revisited at the March 2024 meeting due to lack of consensus on coding placement and additions, but it is possible it could be revisited in the future 1/

Patient-Led Research Collaborative
@patientled
Huge thank you to everyone who submitted comments in support last fall! If PLRC presents a code for PEM/PESE in future meetings, we’ll share the proposed code and coding structure as soon as it is finalized as we’ve done in meetings past. /2

5:52 PM · Mar 8, 2024

 

[US] ICD-10-CM:

CDC has released the October 1, 2024, ICD-10-CM release. This release replaces the FY24, April 1, 2024, release.

FY25 ICD-10-CM codes should be used for healthcare services provided from October 1, 2024, through September 30, 2025.

The files can be download from Zip files here: https://www.cdc.gov/nchs/icd/icd-10-cm/files.html

For ease of access, the 2024 Guidelines, FY25 Tabular List and FY25 Index can be downloaded directly from my website:


2024 Guidelines [831 KB]: https://dxrevisionwatch.com/wp-content/uploads/2024/07/icd-10-cm-fy25-guidelines-october-2024.pdf

FY25 Tabular List [7 MB]: https://dxrevisionwatch.com/wp-content/uploads/2024/07/icd-10-cm-tabular-2025.pdf

FY25 Index [9 MB]: https://dxrevisionwatch.com/wp-content/uploads/2024/07/icd-10-cm-index-2025.pdf

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

[US] ICD-10-CM Coordination and Maintenance Committee meeting:

https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html

The next virtual meeting of the ICD-10-CM Coordination and Maintenance Committee meeting is scheduled for

September 10-11, 2024

• June 7 was the deadline to propose ICD-10-CM topics for discussion at the September meeting.

It is not yet known whether revised proposals for adding a symptom chapter code for PEM/PEMS is being tabled for further discussion in September.

 

[US] Forthcoming ICD-10-CM Coordination and Maintenance Committee

Virtual Meeting

September 10-11, 2024 9:00 a.m.-5:00 p.m.


The Tentative Agenda is now available to download: https://cdc.gov/nchs/data/icd/Tentative-Agenda-September-2024.pdf

41 topics are listed for discussion.

This is a very full agenda which may or may not include additional topics when the full Topic Packet is released a day to one week prior to Day One of this September meeting.

This tentative agenda does not currently include the re-presentation of revised proposals for the addition of a Symptom chapter code for the terms:

Post-exertional malaise
PEM
PESE
Post-exertional symptom exacerbation
​

The proposals as they had stood at the September 2023 meeting can be found on pp 109-111 of the September 2023 Topic Packet: https://www.cdc.gov/nchs/data/icd/Topic-packet-September-2023-Final.pdf

and here:





I will post the full Topic Packet once this is available and any update from PLRC on whether revised proposals for PEM/PESE are being tabled for the September meeting.

Note that if a code for PEM/PESE were to be approved for adding to ICD-10-CM the code could not be used in conjunction with the code G93.32 ME/CFS.

Extract from PLRC proposal FAQ:




Edited to add extract from PLRC FAQ document explaining ICD-10-CM coding convention requirement for an Excludes1 for post-exertional malaise (R68.85).

 

On 15 November, the ME Association reported and commented on an answer to a parliamentary question submitted by John McDonnell (Independent, Hayes & Harlington).

Note:
SNOMED CT is a terminology system. The WHO's ICD-10 is a classification system. SNOMED CT is mandated by NHS England for use at the point of care in both primary and secondary care.

It replaces the primary care Read Code (CTv3) terminology system which is now retired, though some GP practices are still coding with CTv3 codes during a transition period as well as recording SNOMED CT codes captured from hospital letters and discharge forms.

The answer in response to this Written Question also answered an additional question from John McDonnell (the text of which is omitted from the MEA's report), which was:

UIN 12359 tabled on 4 November 2024

Chronic Fatigue Syndrome: Diagnosis
To ask the Secretary of State for Health and Social Care, if he will ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT classification system in primary care.
​

Note:
The term "Myalgic encephalomyelitis" is already included in SNOMED CT under Synonyms under Chronic fatigue syndrome.

It is assigned the same SNOMED CT Concept code as "Chronic fatigue syndrome" (SCTID: 52702003). It is designated an "Acceptable" term in the National Health Service realm language reference set (clinical part) and the term is searchable in the database. In the SNOMED CT to ICD-10 Classification Map, all terms listed under SCTID: 52702003 (including the UK Edition specific, Mild; Moderate; and Severe specifiers under "Children") are cross mapped to ICD-10's G93.3 code.

There have been misconceptions on Twitter/X that the term "Myalgic encephalomyelitis" is not included or codable in SNOMED CT.

In a post after this post I shall be posting copies of two recent requests for changes to SNOMED CT UK Edition which were submitted via the NHS Digital Submission Portal on 6 November.

https://meassociation.org.uk/2024/1...med-ct-classification-system-in-primary-care/

Parliamentary Question: ME/CFS: SNOMED CT classification system in primary care

November 15, 2024

On the 13th of November 2024, Karin Smyth (Labour, Bristol South) answered a parliamentary question from John McDonnell (Independent, Hayes & Harlington).

Question

To ask the Secretary of State for Health and Social Care, how codes are created for the SNOMED CT classification system in primary care.


MEA's summary of Answer

Karin Smyth, Labour, Bristol South:

There is currently a code in SNOMED CT for myalgic encephalomyelitis. The Fully Specified Name (FSN) is ‘Chronic fatigue syndrome (disorder)’. The FSN for a code is not intended for use by a clinician. Instead, a clinician is expected to make use of the synonyms for the code, which include myalgic encephalomyelitis.

Clinical systems usually display a ‘preferred term’, deemed to be the most clinically appropriate way of expressing a concept. The preferred term for the code ‘Chronic fatigue syndrome (disorder)’ is ‘Chronic fatigue syndrome’.

NHS England is reviewing the preferred term to align it with the current most clinically appropriate term for the UK, with the preferred term ‘ME/CFS – myalgic encephalomyelitis/ chronic fatigue syndrome’ being considered.


Read the answer in full

Answered on

13 November 2024

Codes are created for SNOMED CT by one of the following organisations:

- UK National Release Centre (NRC), hosted by the Technology and Information Standards (TIS) group in NHS England;

- SNOMED International, a not-for-profit organisation that owns, administers and develops SNOMED CT;

- any other NRC in any other SNOMED CT member country.

All requests made to NHS England must be compliant with the Editorial Policy and are processed in accordance with the SNOMED CT UK Edition Governance and Change Request Process. Concepts are added or changed in SNOMED CT by NHS England terminologists in line with International and UK Editorial Principles as defined by SNOMED International at the recommendation of international clinical advisory groups. The authoring process includes a technical quality assurance and peer review. Once the authoring process has been completed and quality assured, the files are published on the Terminology Reference data Update Distribution website.

There is currently a code in SNOMED CT for myalgic encephalomyelitis. The Fully Specified Name (FSN) is ‘Chronic fatigue syndrome (disorder)’. The FSN for a code is not intended for use by a clinician. Instead, a clinician is expected to make use of the synonyms for the code, which include myalgic encephalomyelitis.

Clinical systems usually display a ‘preferred term’, deemed to be the most clinically appropriate way of expressing a concept. The preferred term for the code ‘Chronic fatigue syndrome (disorder)’ is ‘Chronic fatigue syndrome’.

NHS England is reviewing the preferred term to align it with the current most clinically appropriate term for the UK, with the preferred term ‘ME/CFS - myalgic encephalomyelitis/ chronic fatigue syndrome’ being considered.


MEA Comment

Despite SNOMED providing clinicians with a suitable diagnostic code – and the news about the addition of ‘ME/CFS' is welcomed – several challenges remain. We know, for example, that appropriate codes are not being applied to digital medical records which makes it very difficult to ascertain how many people have ME/CFS (or Long Covid) across the country. SNOMED also allows for illness severities to be recorded and while we have seen an example of this working in one GP practice within the Suffolk and North-East Essex ICB, it is not something that other GPs have been using.

This makes it harder for healthcare commissioners to scope new ME/CFS/LC specialist services – especially for those who are worst affected – because they don't have an accurate understanding of local patient numbers and have to fall back on some really dated and more general prevalence estimates. We will continue promoting the use of SNOMED codes to ICBs and Health Boards and in primary and secondary care services as part of part of the Health & Social Care project.

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

SNOMED INFO [Ed: Link is for listing of SCTID: 52702003 Chronic fatigue syndrome and its "Synonym" terms in the UK Edition of SNOMED CT browser]

Russell Fleming
Head of Project Development,
The ME Association​

 

Two requests for changes to SNOMED CT were submitted on 6 November.

The requests below are taken from the publicly viewable submissions' archive database of the NHS Digital Request Submission Portal. The full submission and identity of the individual or body which has submitted these proposals is not accessible to those without registered access to the submissions platform; nor is the progress of submissions trackable nor are any rationales for decisions publicly available.

I will keep an eye on the portal for the outcome of these requests. (Once processed, they will be marked as "Closed - Declined" or "Closed - Complete" or "Closed Exists"; or returned to requestor for clarification; or marked as having been referred on to SNOMED International's terminology team for their input or for their consideration for implementation in the International Edition.)

Note that Request 52225 is requesting that "SI" [SNOMED International] considers replacing the current "Fully specified name (FSN)" of 52702003 Chronic fatigue syndrome (disorder) with "Myalgic encephalomyelitis/chronic fatigue syndrome (disorder)". Currently, "Myalgic encephalomyelitis" is listed as an "Acceptable" term along with a number of alternative "Synonyms" terms under the FSN term.


https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=52224

Submitted: 06/11/24

Request 52224

Type
Change description

Status
Request provisionally accepted

Concept identifier
52702003

Priority
Very Urgent

Brief summary of the request
Add new synonyms for ME/CFS with one as UK preferred term

Description of the addition or change
Please add the following descriptions to the concept:
52702003 |Chronic fatigue syndrome (disorder)|

Descriptions:
ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome
to add as Preferred synonym

And
Myalgic encephalomyelitis/chronic fatigue syndrome
to add as Acceptable synonym

Evidence:
https://bestpractice.bmj.com/topics/en-gb/277
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
https://www.cdc.gov/me-cfs/about/index.html


Request update
Source of authority
Provisional concept term
SNOMED International request reference number

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

https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=52225

Submitted: 06/11/24

Request 52225

Type
Change description

Status
Submitted

Concept identifier
52702003

Priority
Urgent

Brief summary of the request
Ask SI to change FSN of 52702003 |Chronic fatigue syndrome (disorder)|

Description of the addition or change
Please ask SI to change the FSN of the concept:
52702003 |Chronic fatigue syndrome (disorder)|

To:
Myalgic encephalomyelitis/chronic fatigue syndrome (disorder)

Whilst FSNs should not have a forward slash, we feel this is necessary to represent to international terming used for this disorder.

Evidence:
https://bestpractice.bmj.com/topics/en-gb/277
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
https://www.cdc.gov/me-cfs/about/index.html


Request update
Source of authority
Provisional concept term
SNOMED International request reference number

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

Additional requests for changes:

In September 2024, this request for addition of a specific code for "Myalgic Encephalitis" [sic] was submitted and marked as "Closed - Declined":

https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=51349

Submitted: 12/09/24

Request 51349

Type
Add concept

Status
Closed - Declined

Hierarchy
Clinical finding

Suggested name, term or description
Myalgic Encephalitis instead of CFS

Priority
Important

Brief summary of the request
Would it be possible to have a specific Snomed code for ME Myalgic Encephalitis?

Description of the addition or change
There is no specific code for adding to medical records relating to ME, only Chronic Fatigue Syndrome. This can be distressing for patients if the records are incorrect.
Can you please advise if this is possible?
Many thanks
Hannah Bullock
Request update

Source of authority
Provisional concept term
SNOMED International request reference number

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

In 2015, the Countess of Mar requested via email correspondence [1] with the then managers of SNOMED CT UK Edition:

"...as the condition is universally known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or CFS/ME – see the attached paper, whether it would be possible to incorporate ME in 52702003 rather than leaving it just as CFS."

This was declined on the basis that:

"Each concept has more than one description in SNOMED to take account of different ways of expressing the same thing. 52702003 | Chronic fatigue syndrome (disorder) has a synonym “ME - Myalgic encephalomyelitis” attached to it so this would meet your requirement below."

1 https://dxrevisionwatch.com/wp-content/uploads/2015/12/snomed-3.pdf

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

Leaving issues of nomenclature preferences aside, conjoining two terms within SNOMED CT that already exist within the system as unique machine readable terms may present technical problems if a conjoined term is designated as the Fully specified name (FSN).


Additionally there may be SNOMED CT convention issues:

https://confluence.ihtsdotools.org/display/DOCEG/Punctuation+and+Symbols

"Forward slash ( / )
"The forward slash should not be used in FSNs. When the slash is part of the authoritative name (e.g. representation of heterozygosity in hemoglobinopathies), a hyphen (no space before or after) is used in the FSN. The forward slash, without spaces, may be used in a preferred term or synonym."​

Acronyms are not permitted, either, for Fully Specified Names but are allowed in a Preferred term or Synonym when followed by the term expansion. (The SNOMED CT convention is Acronym followed by a space, hyphen, and another space, then the expanded term. The first word after the hyphen should be lower case.)

https://confluence.ihtsdotools.org/display/DOCEG/General+Naming+Conventions

 

I note that although the US's NCHS/CDC approved the conjoined term, "myalgic encephalomyelitis/chronic fatigue syndrome" and implemented it in ICD-10-CM in 2022, the term "myalgic encephalomyelitis/chronic fatigue syndrome" has not been added to the SNOMED CT US Edition, either as a Fully Specified Name (FSN), Preferred term or Synonyms term.

 

There is a significant error in this ME Association webpage on Nomenclature around the inclusion of Postviral fatigue syndrome in SNOMED CT. I have asked for it to be corrected.


https://twitter.com/user/status/1858112261321003241


Dx Revision Watch @dxrevisionwatch
@MEAssociation
Your article at https://meassociation.org.uk/medical-matters/items/nomenclature-mecfs is incorrect. It says: "It also fails to recognise or code Post-Viral Fatigue Syndrome which is something else it should do to comply with the World Health Organisation's International Classification of Diseases version 11."


Edited to add: This error is being attended to.