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

Medfeb wrote:

Is there not a potential danger that patients who meet the criteria for a new diagnosis of G93.32 ME; ME/CFS; CFS might initially be assigned only the PEM Symptoms, signs chapter code and then get stuck with just an R code?

 

Is there any data available yet or research being undertaken into what is happening to those patients with a historically assigned R53.82 code? Are their codes being mapped to G93.32 or amended in their electronic patient records to G93.32?

Has CDC made any comment or statement for clinicians and the coding industry relevant to those who, in the past, have been coded under R53.82?

Has anyone requested that the map from SNOMED CT US Edition to ICD-10-CM is updated to reflect the new G93.32 code? (The US Edition Refsets map still points to a choice of G93.3 or R53.82.)

https://browser.ihtsdotools.org/?pe.../SNOMEDCT-US/2023-03-01&release=&languages=en

Select "Refsets" Tab under "Concept Details":

 

All of the historical records coded with R53.82 since the ICD-10-CM was implemented in 2015 will never be remapped to the G93.3n group. That is exactly why US advocates fought repeatedly to get CFS reassigned from the symptom chapter, where the US unilaterally moved it, back to the G93.3 location where WHO and the rest of the world have it. (and yes, I know ICD-10-CM is used in Spain). Unfortunately, campaigns to keep that from happening over the years means we will never be able to do anything about the 2015-2022 ME/CFS EHR records coded as chronic fatigue.

For any visits after October 1, 2022, the diagnosis will automatically be assigned G93.32

 

Is there not a potential danger that the Long COVID patient will never have their PEM recognized - or even their ME/CFS - and then be told to go out and exercise and be harmed as a result?

Yes, it's possible that a doctor could diagnose PEM and then fail to recognize that the person actually meets criteria for ME/CFS. But I think it's far more likely that having a PEM code increases the awareness and recognition of both PEM and ME/CFS.

 

If the proposal is being considered for implementation on October 1, 2024, then the public comment period would be a little over 8 weeks following presentation at the meeting:


https://twitter.com/user/status/1631880293538836480

 

Topic Packet released yesterday, but as far as I can see, the five ME groups supporting this initiative have yet to post anything at all about this proposal.

Will any representatives of the five supporting ME groups be participating in the meeting to field questions and queries about the proposal from ME patients and advocates?

 

Lisa will be presenting and available for questions.

If you post or DM me the specific questions you'd like the ME orgs to answer, I will forward to them.

 

Right, so no rep from the five supporting ME orgs will be participating in this virtual meeting.

I'm not intending to submit comment to CDC/NCHS on this proposal, myself.

I haven't formed an opinion on whether this proposal might benefit ME patients or whether there might be unintended consequences; there are too many unknowns about how this proposed code might be applied by clinicians and the coding industry, if it were approved.

I don't have any specific questions to put to the five supporting orgs, either directly or via an intermediary.


My concerns remain the same:

a) Why was the intention to submit this proposal not put in the public domain for stakeholder discussion prior to its submission, last June?

b) The Tentative Agenda has been available since at least February 11; this listed only the topics for discussion - not the names of the requestors.

Why was it necessary for me to search Google in order to attempt to establish who the requestors were and to find a copy of the proposal, as it had stood at the point of submission, last June?

c) When the full Topic Packet became available, last week, why did none of the supporting ME groups publicly post about this (since revised) proposal, with details of the C&M Meeting and how to register for participation?

d) Why is there no information on #MEAction's website about this proposal?

e) Why are these five supporting ME orgs keeping themselves at arms length from ME stakeholders in this proposal?

At least one senior #MEAction office holder seemed ill-informed about the proposal and deferred enquiries to you (though your role in this initiative was not clarified by Jaime Seltzer and it remains unclarified). These orgs have put their names behind this proposal but seem oddly reluctant to engage publicly in relation to this proposal.

f) The C&M meeting opens this coming Tuesday at 9:00am Eastern Time. It is unclear whether the PEM topic will be reached on Day One or Day Two, or at what estimated time.

There is an expectation that these five orgs will announce this proposal prior to the meeting and alert interested communities on how they can access the meeting or listen to recordings - I should not have had to do this, myself. Or is it the intention that nothing is going to be announced until after the presentation has taken place?

So my question remains the same as my question on February 15: where is the transparency?

 

Some cancer patients might also consider themselves stakeholders in a proposal to add a code for PEM to the Symptoms, signs chapter:


2020 Aug;60(2):407-416. doi: 10.1016/j.jpainsymman.2020.02.012. Epub 2020 Feb 24.

Post-exertional Malaise in People With Chronic Cancer-Related Fatigue
Rosie Twomey 1, Samuel T Yeung 2, James G Wrightson 3, Guillaume Y Millet 4, S Nicole Culos-Reed 5

• PMID: 32105793 DOI: 10.1016/j.jpainsymman.2020.02.012

Abstract available.

PDF of Pre-print version of full text here:
https://www.medrxiv.org/content/medrxiv/early/2020/02/25/2019.12.12.19014829.full.pdf

Extract:

Conclusion: A subset of people with chronic CRF [cancer-related fatigue] (up to 33% in this sample) may experience PEM. Exercise specialists and health care professionals working with people with chronic CRF must be aware that PEM may be an issue. Symptom exacerbation after exercise should be monitored, and exercise should be tailored and adapted to limit the potential for harm.

Key message: This study provides preliminary evidence that a subset of people with chronic cancer-related fatigue experience post-exertional malaise.

 

Note: On Page 127 of the March 7-8 C&M meeting Topic Packet:

https://www.cdc.gov/nchs/data/icd/Topic-packet-March-7-8-final-3-2-23.pdf

Under agenda section:

TABULAR MODIFICATIONS PROPOSED ADDENDA
All approved modifications will be effective October 1, 2023

The following modification to the Tabular List is being effected to correct the error under Excludes1 (since the R53.82 inclusion term, "chronic fatigue syndrome NOS" has been removed from under the R codes):

The modification is:




Note: The proposal, as submitted by NCHS/CDC at the September 2021 C & M Committee meeting, had recommended this term under Excludes1:

Excludes1: chronic fatigue, unspecified (R53.82)

not

Excludes1: chronic fatigue NOS (R53.82)

as per the March 7-8, 2023 Addenda Modifications.



Also, the following modification to R53.82 to be effective from October 1, 2023:




The April 1, 2023 release currently reads:

https://www.cdc.gov/nchs/icd/Comprehensive-Listing-of-ICD-10-CM-Files.htm


R53.82 Chronic fatigue, unspecified

Excludes1: chronic fatigue syndrome (G93.32)

myalgic encephalomyelitis (G93.32)
post infection and related fatigue syndromes (G93.39)
postviral fatigue syndrome (G93.31)​

So it appears for the October 2023 Tabular List, the word "other" is being inserted in front of "post infection and related fatigue syndrome (G93.39)" under the R53.82 Excludes1 list.

The remaining term listed under Excludes1, "postviral fatigue syndrome (G93.31)" has been omitted from the Addenda modifications but presumably remains unchanged. (If "postviral fatigue syndrome (G93.31)" were intended to be deleted, the convention is that it would be listed in the Addenda modifications with the instruction, "Delete" on the left, with a "strikethrough" through the term where it currently appears in the coding structure, not simply omitted.)

 

Details on the various ways of accessing the meeting don't appear to have been included in the Diagnosis Codes Topic Packet, although they usually are.* The only information I can see about joining the meeting is this on the CDC website:

Please use the link to register for the virtual meeting: https://cms.zoomgov.com/webinar/register/WN__piUmNYaRjmkcYczb3ePIQ
Meeting ID: 160 600 6403
Passcode: 357110
After registering, you will receive a confirmation email containing information about joining the webinar.​

However, the Procedure Codes Topic Packet does include additional information about accessing the meeting live (on pages 1 and 2):

See: https://www.cms.gov/files/document/march-7-2023-final-agenda-and-materials.pdf


On page 2 of the Procedure Codes Topic Packet it also says:

"Note: Proposals for diagnosis code topics will be led by the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS) and are scheduled to begin following completion of the CMS procedure code proposals on March 7, 2023. Remaining diagnosis code topics will continue to be presented on March 8, 2023. Please visit CDC’s website for the Diagnosis agenda located at the following address: http://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm ."
​

So Procedure Codes start at 9:00am on Tuesday 7, followed by the Diagnosis Codes which will continue into Day Two (Wednesday 8).

There are over 30 Diagnosis Codes tabled for discussion so it will be another very full agenda. Be aware that for some previous meetings, when there has been a large number of topics tabled for discussion, topics have not always been discussed in the order they appear in the Topic Packet (which is alphabetically).


*I emailed NCHS about this apparent omission prior to finding additional details in the Procedure Codes Topic Packet on the CMS site.

 

Patient Led Research has posted a Q&A on the proposal to add an ICD code for the symptom of PEM to the ICD-10-CM.

This states that PLRC will be presenting around 11:10 on March 8, 2023 and comments will be open until May 5, 2023

Q&A - https://docs.google.com/document/d/1tpwQttfDxuxZQlS6lqzTaqNpcS87d9MnZGm40x5VjBU/edit

Their twitter thread is here - https://twitter.com/patientled/status/1632816858964402176

 

Comments on proposals presented at the March meeting of the ICD-10-CM Coordination and Maintenance Committee should be sent to the following email address:

nchsicd10CM@cdc.gov

Comments are accepted from US stakeholders and from stakeholders outside the US.

 

In addition to PLRC's Q&A, I'd add the following comments to questions raised above and elsewhere

Will the addition of a code for the symptom of PEM result in it being excluded from the diagnosis of ME/CFS.

There are numerous symptoms in the Symptoms and Signs chapter of the ICD-10-CM, such as pain, fever, cough, headache, enlarged lymph nodes, palpitations, elevated blood pressure, shortness of breath. But any of these could also be a core feature of one of the diseases listed in the ICD-10-CM. Listing them in the symptom chapter does not change that.

Similarly, PEM is core to a diagnosis of ME/CFS. Adding a code for the symptom of PEM to the Symptoms and Signs chapter does not change that.
​

Will the addition of a code for the symptom of PEM result in fewer people being diagnosed with ME/CFS?
For instance, if a patient with Long COVID, fibromyalgia, or another condition also has PEM, would the doctor just add the code of PEM and not check to see if the patient also meets criteria for ME/CFS?

Of course, that's possible and that would be a missed ME/CFS diagnosis, something that currently happens often.

But this is more likely to result in an increase in ME/CFS diagnosis.

Prior to Long COVID, PEM was underrecognized and misunderstood in the medical community. This has likely contributed to the well-known underdiagnosis and misdiagnosis of ME/CFS and to doctors inappropriately recommending people with ME/CFS exercise, even when patients said it harmed them.

Long COVID is bringing awareness to both PEM and ME/CFS. So, rather than leading to underestimates of ME/CFS, adding a code for PEM (PESE) is more likely to improve recognition of both PEM and ME/CFS and result in more accurate and appropriate diagnosis and treatment for all patients.

​

How will medical providers be educated about this code and PEM itself?

While it's much too slow, doctors are beginning to be educated about PEM and recognizing it in their patients, as a result of Long COVID and clinical guidance from WHO and other sources. When the doctor recognizes PEM in a patient, they write it in the patient's electronic medical chart. If and once the code is implemented, the electronic medical systems will recognize that term and automatically assign the code. ​

 

For Canadians who may not be aware:

It is possible to download a free PDF copy of the ICD-10-CA Index and Tabular List for 2022 from the Canadian Institute for Health Information (CIHI) website online store for personal use only.

Under heading

"ICD-10-CA 2022 (PDF)"

the Index and Tabular List is available to view and download in English or French, as locked PDFs. Please note the licencing terms of use for these documents.

In the English language version, the Tabular List entry for G93.3 can be found on Page 1631.


For some years now, the Canadian clinical modification of ICD-10 (ICD-10-CA) has had both terms: "Chronic fatigue syndrome" and "Benign myalgic encephalomyelitis" listed as inclusion terms under G93.3 Postviral fatigue syndrome.

For the 2022 version of ICD-10-CA, the term "Benign" has been removed from "Benign myalgic encephalomyelitis".

The removal of the "Benign" prefix brings the Canadian ICD-10-CA in line with the now frozen WHO's ICD-10: Version 2019; with the ICD-11 for Mortality and Morbidity Statistics (Version : 01/2023); and with the US's ICD-10-CM.

I am aware that Canadian advocates approached the Canadian Institute for Health Information (CIHI) requesting this revision and I am pleased to see that it has been implemented for the 2022 edition.

 

https://twitter.com/user/status/1636040406516355072


https://twitter.com/user/status/1636044126775832577



(David Tuller informed)

 

Note that the terminology the WHO settled on for ICD-11 is:

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/1069443471

6B60 Dissociative neurological symptom disorder

with the following terms under Synonyms:

• Functional neurological disorders
• Functional neurological symptom disorder [Ed: the DSM-5 term]
• Conversion disorder

6B60 Dissociative neurological symptom disorder is primary parented in Chapter 06 Mental, behavioural or neurodevelopmental disorders under parent block: Dissociative disorders and secondary parented under the Neurology chapter.

(Stone and Shakir wanted their preferred term primary parented under the Neurology chapter but WHO's Dr Geoff Reed had strongly opposed this proposal and it remained primary parented in Chapter 06 under Dissociative disorders.)


DSM-5 initially used the term: Conversion disorder (functional neurological symptom disorder), then more recently revised the order of the terms to Functional neurological symptom disorder (Conversion disorder).


In SNOMED CT International Edition, there is currently a Concept code:

https://browser.ihtsdotools.org/?pe...edition=MAIN/2023-02-28&release=&languages=en

Dissociative disorder

with 37 Children terms, including:

• Conversion disorder, single episode (disorder)
• Dissociative neurological disorder with symptom of alteration of sensation (disorder)
• Dissociative neurological disorder with symptom of movement disorder (disorder)
  • Dissociative tremor (disorder)
• Dissociative neurological disorder with symptom of weakness (disorder)

There is also an existing Concept code for:

https://browser.ihtsdotools.org/?pe...edition=MAIN/2023-02-28&release=&languages=en

Dissociative neurological symptom disorder (disorder) SCTID: 735541006 [under Parent: Dissociative disorder (disorder)]

which is identical to ICD-11's preferred terminology.

Where possible, SNOMED International strives for harmonisation with ICD-11 and their terminology team might be reluctant to create another term (particularly one which ICD-11 had rejected as the preferred term). Reed was very keen that the legacy "Dissociative" element of the terminology should be retained going forward with ICD-11.

Though I could envisage SNOMED's terminology team potentially adding "Functional neurological disorder" under Synonyms to Dissociative neurological symptom disorder (disorder), as they did when a request for addition of a unique Concept code for Somatic symptom disorder was referred on to them, by NHS Digital, several years ago.

They had already added ICD-11's Bodily distress disorder to SNOMED CT International edition as part of the SNOMED CT/ICD-11 harmonisation project. Rather than create a unique Concept code for SSD they added SSD under Synonyms to the existing Concept, Bodily distress disorder, which was consistent with ICD-11's Synonyms under BDD.


Edited to add:

The Parent Concept that the requestor has suggested is:

Neurological finding (finding) SCTID: 102957003

https://browser.ihtsdotools.org/?pe...edition=MAIN/2023-02-28&release=&languages=en


So if the request were accepted and a unique Concept code created that would mean that both terms:

Dissociative neurological symptom disorder (disorder) SCTID: 735541006 under Parent Concept: Dissociative disorder (disorder)

(unless this term was retired/Inactivated - which seems unlikely to me since there is an identical term within ICD-11)

and

Functional neurological disorder under Parent Concept: Neurological finding (finding)

would exist in the SNOMED terminology system.

But there is the facility for listing multiple parents in SNOMED CT.

 

Thank you for bringing the FND to our attention. There is a great deal of confusion about what FND means and how it is used. This reinforces concerns many of us have after seeing this used in the US for people who previously had a CFS diagnosis. It is presented as a "real disease" but the treatment is all behavior based.
The US ICD-10-CM has FND under conversion disorder.

https://www.icd10data.com/ICD10CM/Codes/F01-F99/F40-F48/F44-/F44.6

F44.6

"
Disorder (of) - see also Disease

• conversion (functional neurological symptom disorder)"

"
Applicable To

• Conversion disorder with anesthesia or sensory loss
• Conversion disorder with special sensory symptoms
• Dissociative anesthesia and sensory loss
• Psychogenic deafness

The following code(s) above F44.6 contain annotation back-references

that may be applicable to F44.6:

• F01-F99
  
  Mental, Behavioral and Neurodevelopmental disorders
• F44
  
  Dissociative and conversion disorders"

 

Thank you, Colleen, for this ICD-10-CM information.

If the request for creation of a unique SNOMED Concept for Functional neurological disorder were approved for the International Edition it would automatically be incorporated into the US edition, UK edition and all these national editions at their next twice yearly update release, unless the national managers of the national editions elect not to incorporate the Concept term:

Argentinian Edition
Austrian Edition
Australian Edition
Belgian Edition
Canadian Edition
Common French Translation
Danish Edition
Estonian Edition
Finnish Edition
Irish Edition
Netherlands Edition
Norwegian Edition
New Zealand Edition
Spanish Edition
Swedish Edition
Swiss Edition
Uruguay Edition

 

The term "Functional neurological disorder" is already in SNOMED CT under Synonyms to:

SCTID: 20734000 Psychologic conversion disorder (disorder)

which is parented under: SCTID: 735541006 Dissociative neurological symptom disorder.

This happens to be the US Edition but it is also in the International edition, UK edition and other national editions:

https://browser.ihtsdotools.org/?pe.../SNOMEDCT-US/2023-03-01&release=&languages=en




Edited to add:

The term "Functional neurological disorder" was first added under Synonyms to SCTID: 20734000 Psychologic conversion disorder (disorder) for the International Edition's January 2021 release (Release: 2021-01-31).

It was subsequently incorporated into the UK Edition, US Edition and other national editions.

So, it was added quite recently, in early 2021.