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

For the sake of completeness, in early 2019 there had been a request for creation of a "Read Code" for the term, "Functional Neurological Disorder" for use in the GP EMR system, "SystmOne":

https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=26724

This request was marked as Declined, which is not surprising since the Read Code/CTV3 terminology system was retired by 2018 and no new requests for creation of Read Codes/CTV3 codes could be considered. All healthcare services in England were expected to switch from Read Codes/CTV3 to the SNOMED terminology system by April 2020.
 
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Recordings of the March 7-8 Coordination and Maintenance Committee meeting with integrated audio transcript are now available from this CDC page: https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm

Day 1 (Tuesday, March 7):

Meeting Recording: Recording of the procedure code topics led by the Centers for Medicare and Medicaid Services (CMS), followed by the diagnosis code topics led by the Centers for Disease Control and Prevention’s National Center for Health Statistics (CDC/NCHS) discussed during the March 7, 2023, ICD-10 Coordination and Maintenance Committee Meeting*:

https://cms.zoomgov.com/rec/play/bs...hLk_BCcuMs.MwYKaPXGJm1TffkG?continueMode=true

Passcode:

36C12&Jf


Day 2 (Wednesday, March 8):

Meeting Recording: Recording of the diagnosis code topics led by the Centers for Disease Control and Prevention’s National Center for Health Statistics (CDC/NCHS) discussed during the March 8, 2023, ICD-10 Coordination and Maintenance Committee Meeting*:

https://cms.zoomgov.com/rec/share/K...Rbf0z9GxT4XMQ2OtUDjfUQzc3QWe.d-HoQvWa7ZjDcOL-

*Please disregard the integrated transcript that scrolls to the right of the screen in the HTML recording [Ed: unclear what this statement means.]

Passcode:

876a@YX7

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

The Diagnosis codes topics were not presented in the order they were listed in the Topic Packet.

The presentation by Lisa McCorkell was reached on Day 2 and starts at around 2hrs 28 minutes in from the start of the recording.

No decisions on whether to approve or reject proposals are made at the meetings, themselves.


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

nchsicd10CM@cdc.gov

Deadline for comments: May 5, 2023.

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


I was able to access the Zoom meeting from outside the US and elected not to request to raise a question at the end of Lisa's presentation.

The Diagnosis codes section of the March meeting listed over 30 topics for discussion leaving inadequate time for discussion of individual topics. At the end of the PEM presentation, all the time allocated to comments and questions was given over to a single clinician/researcher who spoke at length, strongly endorsing the proposal - then the next topic was swiftly moved onto. I understand that a number of advocates who had requested to make a comment or raise questions were unable to do so and were abruptly cut off.


Meeting presentations:

Zip file: https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/April-1-2023-Update/

> Zip file: March 2023 Presentations
https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/April-1-2023-Update/March 2023 Presentations.zip

Open PDF: Post-Exertional Malaise tmr.pdf


Topic Packet: https://www.cdc.gov/nchs/data/icd/Topic-packet-March-7-8-final-3-6-23.pdf

PDF for PEM presentation attached for ease of reference.
Topic Packet also attached (Pages 107-109 for PEM).
 

Attachments

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Severity specifiers in terminology systems for the coding of Mild, Moderate and Severe ME, Chronic fatigue syndrome:

Over the past few days, there has been some discussion on Twitter about whether severity specifiers are available to primary care practitioners for the coding of severe ME, CFS.

I am collating what is currently known in this post.

There were three severity specifier codes in the now retired Read Code/CTV3 primary care terminology system, in addition to code Xa01F Chronic fatigue syndrome. These were:

XaPom Mild chronic fatigue syndrome

XaPon Moderate chronic fatigue syndrome

XaPoo Severe chronic fatigue syndrome


In this Twitter post:

@HappyHoundHouse posted a screenshot of these three CTV3 severity specifier codes (on the far left of the full image):




This document below suggests that these three codes were added to CTV3 for the 2009 release:

https://www.yumpu.com/en/document/v...es-1st-april-2009-nhs-brighton-and-hove-city-

New Read Codes - 1st April 2009 - NHS Brighton and Hove City

(Scroll through the document to page 10 and the three codes are listed a little over half way down the page.)

Note that all versions of the Read Code system (V2 and CTV3) are now deprecated and the UK Edition of SNOMED CT is now the mandatory terminology system for use at the point of care across NHS England primary care and across all secondary care settings.


SNOMED CT UK Edition:

There are also three severity specifiers in the UK Edition of SNOMED CT. These codes are exclusive to the UK Edition and this is indicated by the Union flag symbol. There are:

Mild chronic fatigue syndrome (SCTID: 377181000000104)
Moderate chronic fatigue syndrome (SCTID: 377171000000101)
Severe chronic fatigue syndrome (SCTID: 377161000000108)

Mild: https://termbrowser.nhs.uk/?perspective=full&conceptId1=377181000000104&edition=uk-edition&release=v20230215&server=https://termbrowser.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104

Moderate: https://termbrowser.nhs.uk/?perspective=full&conceptId1=377171000000101&edition=uk-edition&release=v20230215&server=https://termbrowser.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104

Severe: https://termbrowser.nhs.uk/?perspective=full&conceptId1=377161000000108&edition=uk-edition&release=v20230215&server=https://termbrowser.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104


These three additional SNOMED CT severity specifier are all mapped in the SNOMED CT to ICD-10 Classification Map to ICD-10's G93.3 (which as you know, has no severity specifiers for G93.3 and neither does ICD-11 for 8E49).

SNOMED CT UK Edition does not include the date when these specifiers were first added and it has not been possible to determine whether the codes were added to the UK Edition prior to being added to the CTV3 terminology system or at a later date.


The NHS Digital Portal for submitting requests for changes and additions to SNOMED CT UK Edition has a searchable database which only goes back as far as November 2008.

No requests for creation of severity codes can be found in the database but if severity codes were first created for the Read Codes/CTV3 system, it may be the case that these terms were absorbed into SNOMED CT UK Edition for consistency with CTV3 and for mapping purposes between the two systems, at some point after 2008/9. They have certainly been included in SNOMED CT UK Edition for quite some years as I can remember writing about them in a coding thread on the other forum.


I have no information whether and to what extent these three severity codes are used or whether NHS Digital collates data for them.

I have no information about whether primary care and secondary care actually have these severity codes available for use and listed in their data sets (or whatever they call them) and if not, whether these codes may be used at the discretion of a secondary care clinic, primary care practice or at the discretion of individual clinicians; or whether NHS Trusts, clinics and GP practices have lists of codes they can use but which may not include these three severity specifiers.

NHS Digital should be able to clarify if someone wished to follow this up.

I don't know how much day to day interaction GPs have with the SNOMED CT system, per se. GP practices use electronic patient record products, some of which have SNOMED CT embedded within them. So if a GP or practice admin types in a diagnosis by term, the IT system can read this and automatically assign a SNOMED CT code (and may also map that code to its equivalent ICD-10 code).


So, little known about the application of these three codes other than that they do exist within the UK Edition of SNOMED CT and have been in the system for some years.
 
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Considering how wildly illness can fluctuate, I don't know how this would even work out. It seems like the most difficult thing in the world to even get this recorded at all, for the records to actually reflect changing reality is really asking too much.

It makes sense, but the human factor here makes this impossible. And that doesn't even count the fact of what other disease or illness is still considered mild when it has a 50% reduction on functioning?

Who would consider a 50% cut of their income as mild? Things are out of line with reality here.
 
Dx Revision Watch said:
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.
Click to expand...


Looks like the New Zealand National Release Centre was responsible for the addition of the term "Functional neurological disorder" to the SNOMED CT International Edition's January 2021 Release (under SCTID 20734000 Psychological conversion disorder).


https://www.health.govt.nz/system/f...asenotes_current-en-us_nz1000210_20210401.pdf

SNOMED CT New Zealand Extension PRODUCTION Release Notes - April 2021

See Page 8.


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

Edited to add: The SNOMED CT International Edition has historically released twice yearly updates, in January and July, accompanied by detailed Release Notes.

Since January 2022, an update of the International Edition has been released monthly. (Previous releases can be accessed via a dropdown from the "Version" tab.)

National extensions appear to continue to mostly release bi-annual updates.


https://www.nlm.nih.gov/healthit/snomedct/us_edition.html

"The March 2023 SNOMED CT United States (US) Edition release is now available for download. This release contains 398 new active concepts specific to the US Extension. The March 2023 US Edition of SNOMED CT is based on the content published in the December 2022 SNOMED CT International Edition and includes any SNOMED CT COVID-19 Related Content published in the December 2022 SNOMED CT International Edition. This latest version of the US Edition also includes the SNOMED CT to ICD-10-CM reference set, with over 126,000 SNOMED CT source concepts mapped to ICD-10-CM targets. . .While the SNOMED CT International Edition has moved to monthly releases, the US Edition of SNOMED CT will remain on the current bi-annual release schedule of March and September."
 
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Patient-Led Research Collaborative (PLRC) is soliciting comments in support of adding an ICD code for the symptom of PEM to the US ICD-10-CM.

To sign on in support of this proposal, you can fill out this form and your name will be added to PLRC's public comment.

Note PLRC's public comment is also urging expedited implementation in October 2023. Otherwise, it would not be implemented until October 2024.

PLRC's proposal is here and their Q&A on the proposal is here
 
Medfeb said:
Patient-Led Research Collaborative (PLRC) is soliciting comments in support of adding an ICD code for the symptom of PEM to the US ICD-10-CM.

To sign on in support of this proposal, you can fill out this form and your name will be added to PLRC's public comment.

Note PLRC's public comment is also urging expedited implementation in October 2023. Otherwise, it would not be implemented until October 2024.

PLRC's proposal is here and their Q&A on the proposal is here
Click to expand...
Applying judgements I'd expect of any piece of research I can't say I'm wildly enthused by claims that: "the majority of people with Long COVID report or meet scoring thresholds for PEM/PESE" when the two quoted studies are small relative to the reported numbers experiencing PASC and are wholly dependent on self selection online. I agree with the comments of @Jonathan Edwards on the larger study:

"I would be more cautious about the validity of a study like this. Having looked at the 'Body Politic' site I think we have to consider to what extent this will be a biased sample in all sorts of ways. This is why I think DecodeME should steer well clear of international recruitment because the only chance of a vlid result is ensuring the samples as representatives possible of a population based cohort.

I would worry that this sort for study is what seeds ideas like 'ME is commoner in high achievers and perfectionists' or that it is associated with various ill-defined syndromes, based on case series from physicians and psychiatrists.

The data are of some interest but crucially the paper fails to indicate exactly how the recruitment process worked - how wide it would have gone and how much it was likely to have been affected by inevitable biases. People getting better are less likely to have answered so the curves will be distorted.

Basically you cannot do meaningful biomedical research with this sort of sampling. It is too likely to lead astray. That is not to say that it may not tell us some useful things, about what is missing for instance."
 
Dx Revision Watch said:
Comments on proposals presented at the March meeting of the ICD-10-CM Coordination and Maintenance Committee should be sent to:

nchsicd10CM@cdc.gov

Deadline for comments: May 5, 2023.
Click to expand...


Note that two days before the meeting the comment deadline date was given by PLCR as May 5.




Now the PLRC's public comment (published on Monday) states, "...and urge for its expedited implementation in October 2023."

for which the comment deadline date would be April 7 - just 16 days away.
 
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Important update: Clarification of deadline for public comments on proposal to add a code for Post-exertional malaise/post-exertional symptom exacerbation at the March 7-8, 2023 meeting of the ICD-10-CM Coordination and Maintenance Committee:


As far as I can see, there was no reference in the PLRC's Topic Packet proposal rationale to consideration for October 2023 implementation. During the meeting presentation, I don't recall Lisa McCorkell referencing fast track implementation. Nor have I found a reference to consideration for early implementation in her presentation slides.

The PLRC's Proposal FAQ says:

"6. What comes next?

"Lisa McCorkell, co-founder of PLRC, will present the proposal to the ICD-10 Coordination and
Maintenance Committee on March 8, 2023 (scheduled for 11:10am ET). Public comments
will be open following this until May 5, 2023. Full agenda is located here.

"If the ICD code is accepted, it will be implemented October 1, 2024, unless NCHS decides it
qualifies for expedited implementation."​



But the PLRC is asking supporters to sign up to a Public Comment document by close of business, April 6, 2023 and this document includes the text: "We also urge for this code to be considered for expedited implementation on October 1, 2023 due to its importance to Long COVID research and tracking."


Yesterday, I had sight of a clarification obtained by David Steckel, President, ME International from NCHS/CDC's Traci Ramirez regarding the confusion over whether the deadline for comments on this proposal is April 7 (for consideration for early implementation in October 2023) or May 5 (for consideration for implementation the following year, in October 2024) [1].

Ms Ramirez has confirmed that the proposal for PEM/PES is not being considered for early implementation and that public comments are due by May 5, 2023.


1 Source: Ramirez, T, CCA, Medical Classification Specialist, ICD-10-CM Classification Team, Classification & Public Health Data Standards, National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC) Email correspondence to David Steckel, President, ME International, 22 March 2023.
 
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[US] National Committee on Vital and Health Statistics (NCVHS) Workgroup on Timely and Strategic Action to Inform ICD-11 Policy aka "ICD-11 Workgroup":

https://ncvhs.hhs.gov/wp-content/uploads/2023/03/Final-ICD-11-Workgroup-Charge-January-2023.pdf

January 2023

"This document defines the activities, membership, and administrative requirements associated with the establishment of the National Committee on Vital and Health Statistics (NCVHS) Workgroup on Timely and Strategic Action to Inform ICD-11 Policy, (“ICD-11 Workgroup”). The purpose of the Workgroup is to gather information from a broad range of sources to bring to the full Committee in its effort to develop advice and recommendations to HHS regarding adoption of ICD-11 as a Health Insurance Portability and Accountability Act (HIPAA) code set...

"...NCVHS finds that immediate action is needed if the U.S. is to avoid repeating for ICD-11, the many costs and resource burdens that characterized its late implementation of ICD-10. One important goal in the adoption of ICD-11 is to avoid, if possible, a full U.S.-specific clinical modification as occurred for ICD-10.* In its role as an advisory committee to the Secretary, NCVHS intends for this project to support HHS in leading the U.S. in preparation for policy and implementation decisions regarding ICD-11...

"Areas of focus may include:

"a) Assessing available evidence and make initial observations regarding whether or what type of clinical modification to ICD-11 may be necessary to achieve adequate content coverage with ICD-11 codes, or whether more research on this is needed, or whether WHO ICD-11 is adequate for U.S. purposes.

"b) Identifying anticipated benefits, and costs, of moving to ICD-11 for morbidity classification including barriers to implementation, e.g., readiness as a reimbursement tool, effect on Diagnosis-related Groups (DRGs) and grouper software, preparation of older databases to integrate ICD-11 with prior ICD-9 and ICD-10 data, etc..."​



*Ed: If it were to be decided that a "full U.S.-specific clinical modification" could be avoided, the way this would work is that the US would adopt ICD-11 as it stands but with the addition of US specific codes.

My understanding is that the WHO is still formulating policies around the licensing of ICD-11 for adaptation for national extensions (aka "country modifications" or "clinical modifications"). WHO's position, in the recent past, has been a preference for limiting development of national modifications and instead, providing country-specific linearizations within the core ICD-11 MMS which would display additional country-specific codes. In theory, such an arrangement could expedite the US's implementation of ICD-11 for morbidity use.
 
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If you are not happy with the proposal to add a Symptom chapter code for post-exertional malaise (PEM)/post-exertion symptom exacerbation (PESE) to the US's ICD-10-CM, there is still time to submit comments and concerns.

Send your comments via email to CDC by Friday, May 5.



https://meglobalchronicle.wordpress...myalgic-encephalomyelitis-me-using-icd-codes/

ME Global Chronicle

BURYING MYALGIC ENCEPHALOMYELITIS (ME) USING ICD CODES

Published: 23 April 2023

Colleen Steckel
Independent US advocate

Due to the potential harm which could come from the proposal to add a symptom code for post-exertional malaise (PEM)/post-exertion symptom exacerbation (PESE), I have decided to submit the following comment to nchsicd10CM@cdc.gov.

Deadline for comments is May 5, 2023.

To: nchsicd10CM@cdc.gov

I do not support adding a symptom code for PEM/PESE.

The proposal to add R68.A could lead to tracking data for myalgic encephalomyelitis being further lost. As it stands now, the G93.32 code has become muddied by electronic health record systems expanding how it is used.

By creating a symptom code for PEM/PESE doctors could opt to use their preferred code of chronic fatigue, unspecified (R53.82) along with this new PEM/PESE code instead of G93.32. This coding approach would further bury the ability to track myalgic encephalomyelitis.

Alternatively doctors may diagnose with diseases they are more familiar with that are often seen in our charts like fibromyalgia, postural orthostatic tachycardia syndrome, orthostatic intolerance, depression etc., in conjunction with PEM/PESE instead of diagnosing ME.

In order to make sure those who have Long COVID with PEM/PESE are most accurately tracked, I recommend giving those with Long COVID who have PEM/PESE a unique diagnosis code. I suggest U09.91 be used to enable tracking these patients as a distinct group. A specific code for this subset of Long COVID patients is required if they are going to get the most effective research and treatment protocol as quickly as possible.

Colleen Steckel
Independent patient/advocate myalgic encephalomyelitis


Background

Why diagnosis codes matter

1. Ability to track how many people have ME

2. Ability to track how many people die from ME

3. Ability to get appropriate care covered by insurance

4. Ability to get disability benefits


Proposal to add new symptom code R68.A

In March, a proposal was submitted by Long COVID advocates to NCHS/CDC to add a code for post-exertional malaise/post exertion symptom exacerbation (PEM/PESE) to the US healthcare system, ICD-10-CM. The new code, if approved, would be R68.A.

We have all seen the challenges that come with trying to get a diagnosis of myalgic encephalomyelitis. Most doctors prefer to use the less controversial codes like chronic fatigue, unspecified (R53.82) or codes that focus on one aspect of ME. For instance, those with pain are often labeled with fibromyalgia. Doctors may also focus on the dysautonomia symptoms and code accordingly.

Because of this tendency to avoid the G93.32 code, concerns have been raised that the addition of a symptom code for PEM/PESE may compound this problem. Up until now, patients who have symptoms of orthostatic intolerance, pain, and cognitive issues combined with PEM/PESE could point their doctors to the G93.32 code because that is the only code that encompasses PEM/PESE.

The potential to cause harm may be that doctors will rely on the more common codes like chronic fatigue, unspecified or fibromyalgia and then just combine those with the PEM/PESE code.

This may lead to those with ME being categorized outside of the G93.32 code. The result being that ME would become even more invisible.

The following chart shows how a medical provider could code patients without using ME/CFS.

colleen-afb.1.png


The list of possible treatments offered in this chart are based on historic patient experience.

In the US, ICD codes are also used for decisions made by insurance companies about what care is covered. To learn more about concerns about this proposal to add PEM/PESE to the US ICD codes, please read HERE.

This proposal is discussed at Science for ME beginning HERE.

Submit your comments about this proposal by May 5, 2023 to nchsicd10CM@cdc.gov


Problems with G93.32

The following explains how G93.32 is now being used for more than just ME, ME/CFS and CFS.

Outside of the US, tracking information has not been available for myalgic encephalomyelitis separate from chronic fatigue syndrome because the World Health Organization combines both under the G93.3 code.

In the US, up until October 2022, ME was coded G93.3 and CFS was coded in the Symptoms, signs chapter under R53.82. After October 1, 2022, ME, CFS & ME/CFS were all combined under G93.32. Read about that change HERE.

colleen-afb.2.png


Continued in Part Two.
 
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Part Two:

It has come to light that one of the largest providers of electronic health records information services, EPIC, is informing doctors that G93.32 also applies to “Long Covid with chronic fatigue” along with several other labels.

The following is how EPIC is directing doctors to use the G93.32 code. Info originally found from a tweet by @Neuralgroover on December 12, 2022 ).

I confirmed this list in March with my doctor who also uses EPIC.

G93.32 usage per EPIC electronic health record (included with codes in parenthesis)

ME

● ME (myalgic encephalomyelitis)

● Myalgic encephalomyelitis syndrome

● Benign myalgic encephalomyelitis

● Encephalomyelitis, epidemic myalgic

● Myalgic encephalomyelitis

● Epidemic myalgic encephalomyelitis

CFIDS

● Chronic fatigue and immune dysfunction syndrome (D89.9)

● CFIDS (Chronic fatigue and immune dysfunction syndrome) (D89.9)

CFS

● CFS (chronic fatigue syndrome)

● Chronic fatigue disorder

● Chronic fatigue syndrome with Fibromyalgia (M79.7)

ME/CFS

● Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

● Myalgic encephalomyelitis/chronic fatigue syndrome

Post-COVID / Long hauler

● Post-COVID-19 syndrome manifesting as chronic fatigue (U09.9)

● COVID-19 long hauler manifesting chronic fatigue (U09.9)

● Post-COVID chronic fatigue (U09.9)


This broadening of the meaning of the G93.32 code by EPIC also means there is no way to track how many contract or die from ME.


Who is behind these ICD-proposals

R68.A

The proposal to add the symptom code of R68.A for PEM/PESE was presented by Lisa McCorkill of Patient-led Research Collaborative (PLRC), group of Long COVID patients who are also researchers, at the ICD-10-CM Coordination and Maintenance Committee meeting on March 8, 2023. This proposal listed the following orgs and advocates as supporting this proposal.

colleen-afb.3.png


G93.32

The proposal to put ME, CFS and ME/CFS under the G93.32 code was presented by Mary Dimmock in September 2021. The request listed the following orgs as supporting that proposal:

1. The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME)
2. #MEAction
3. Open Medicine Foundation
4. Solve M.E.
5. Massachusetts ME/CFS & FM Association
6. the Minnesota ME/CFS Alliance
7. Pandora Org

See details HERE

Conclusion

The proposal to add the PEM/PESE code in conjunction with the previous decision to lump CFS, ME/CFS & ME under G93.32 has tremendous potential to cause serious harm to patients as this approach by the CDC does not allow for tracking of ME as a distinct disease. This makes it much harder to find biomarkers, treatments or cures for this patient group. It also compounds the confusion doctors have about the full spectrum of biological abnormalities seen in ME as it moves the medical community’s focus toward the vague symptom of PEM/PESE.

Please join me in raising awareness about the danger of vague criteria and ICD codes that impede progress toward tracking ME as a distinct patient group.

Colleen Steckel
Independent US advocate

Founder of Faceboook’s ME-ICC and other marginalized diseases (public on Facebook)
co-editor at ME Global Chronicle
Committee member at www.MEadvocacy.org

Follow on twitter – @kcsteckel

With gratitude to Suzy Chapman (@DxRevisionWatch), Eileen Holderman (@TurnItUp4ME) and David Steckel for their valuable input.
 
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Update on the outcome of the 07/02/23 request submitted via NHS Digital's UK SNOMED CT Submission Portal to add a Concept for Functional neurological disorder (FND) under suggested Parent identifier, 102957003 Neurological finding:

https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=43826


This request was referred on to SNOMED International's terminology team for consideration. Note that the name of the individual or organisation which had requested a code for FND is not included in the public version of the SNOMED CT UK submission archive.


At the point of this submission, the term "Functional neurological disorder" was already included in SNOMED CT International and in national extensions as a Synonym term under: SCTID: 20734000 Psychologic [sic] conversion disorder.

The New Zealand National Release Centre appears to have been responsible for the addition of the term "Functional neurological disorder" to the SNOMED CT International Edition's January 2021 Release, under SCTID 20734000 [1].


A change of relationship for the April 2023 release:

SNOMED CT International has historically released twice yearly updates, in January and July, accompanied by detailed Release Notes. Since January 2022, an update of the International Edition has been released monthly. (National extensions appear to continue to mostly release bi-annual updates.)

For the SNOMED International release for April (release 2023-04-30) the SCTID 20734000 Psychologic conversion disorder Concept has been retired.

Retired (aka "Inactive") Concepts display thus on a pink background:
https://browser.ihtsdotools.org/?pe...edition=MAIN/2023-04-30&release=&languages=en


For the April release, Functional neurological disorder has been relocated under Synonyms under existing Concept, SCTID: 735541006 Dissociative neurological symptom disorder - which is the ICD-11 term - along with addition of the acronym, "FND - functional neurological disorder".

The term "Conversion disorder", also previously under Synonyms to Psychologic conversion disorder, has also been relocated to the Dissociative neurological symptom disorder Synonyms list.


Functional neurological disorder's new parental relationship can be viewed here:
https://browser.ihtsdotools.org/?pe...edition=MAIN/2023-04-30&release=&languages=en


SNOMED CT International release for April 2023 (release 2023-04-30):

fnd-snomed-3.png




It appears that the UK request for creation of a Concept code for FND under 102957003 Neurological finding was rejected in favour of retaining the term under Mental disorders but relocating as a Synonyms term under Dissociative disorder (disorder) > Dissociative neurological symptom disorder (disorder), which is the ICD-11 term.



SNOMED CT strives where possible for alignment with ICD-11. The ICD-11 preferred term is code "6B60 Dissociative neurological symptom disorder", with "Functional neurological disorders" and "Conversion disorder" under Synonyms to code 6B60.

Stone, Shakir et al had lobbied hard for FND (or a similar term) plus sub classes to be primary parented under the Neurological chapter for ICD-11. Their proposals were robustly opposed by the ICD-11 Revision of MH chapter classification team and the ICD-11 term of choice, Dissociative neurological symptom disorder, was retained in the MH chapter under parent class, Dissociative disorders.

Secondary and tertiary parents are permissible within the ICD-11 Foundation Linearization: as a concession to Stone and Shakir, the term, Dissociative neurological symptom disorder was secondary parented under the Neurology chapter. So both a primary parent and a secondary parent are listed for Dissociative neurological symptom disorder:

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

ICD-11 Foundation:

Dissociative neurological symptom disorder

Parent(s)
Dissociative disorders
Diseases of the nervous system

Description
Dissociative neurological symptom disorder is characterised by the presentation of motor, sensory, or cognitive symptoms that imply an involuntary discontinuity in the normal integration of motor, sensory, or cognitive functions and are not consistent with a recognised disease of the nervous system, other mental or behavioural disorder, or other medical condition. The symptoms do not occur exclusively during another dissociative disorder and are not due to the effects of a substance or medication on the central nervous system, including withdrawal effects, or a Sleep-Wake disorder.

Synonyms
  • Functional neurological disorders
  • Functional neurological symptom disorder
  • Conversion disorder
Exclusions
  • Factitious disorders ⇒
Diagnostic Requirements etc.

________________________________________________________________________________________________

1 Source: SNOMED CT New Zealand Extension PRODUCTION Release Notes - April 2021
https://confluence.ihtsdotools.org/...tension+PRODUCTION+Release+Notes+-+April+2021

See Table 3, under heading: "Description statistics The SNOMED NZ NRC promoted 5 new descriptions to the SNOMED International Edition January 2021 release. Table 3. New descriptions in the SNOMED International January 2021 release"
 
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No idea whether anything new or noteworthy in this:


---------- Forwarded message ---------
From: Dr. Marc-Alexander Fluks
Date: Mon 29 May 2023 at 13:51
Subject: WHO discussing PFS/CFS/ME, FM, and Lyme disease



WHO discussing PFS/CFS/ME,
https://icd.who.int/icd10updateplatform/PropD.aspx?prop=2211
https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome
https://icd.who.int/browse10/2010/en#/G93.3
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

WHO discussing FM,
https://icd.who.int/icd10updateplatform/PropD.aspx?prop=1299
https://icd.who.int/browse10/2010/en#/M79.7
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/849253504

WHO discussing Lyme disease,
https://icd.who.int/icd10updateplatform/PropD.aspx?prop=2204
https://www.who.int/standards/classifications/frequently-asked-questions/congenital-lyme-disease
https://icd.who.int/browse10/2010/en#/A69.2
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1600014919

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ICD Update Platform: Search engine,
https://icd.who.int/icd10updateplatform/search.aspx

ICD Frequently discussed topics (including PFS/CFS/ME and Lyme disease),
https://www.who.int/standards/classifications/frequently-asked-questions/

ICD-9,
https://en.wikipedia.org/wiki/List_of_ICD-9_codes

ICD-10,
https://icd.who.int/browse10
https://en.wikipedia.org/wiki/ICD-10

ICD-11,
https://icd.who.int/browse11
https://www.researchgate.net/public...tion_of_diseases_for_the_twenty-first_century
https://en.wikipedia.org/wiki/ICD-11
 
Colleen Steckel said:
The proposal to add the PEM/PESE code in conjunction with the previous decision to lump CFS, ME/CFS & ME under G93.32 has tremendous potential to cause serious harm to patients as this approach by the CDC does not allow for tracking of ME as a distinct disease. This makes it much harder to find biomarkers, treatments or cures for this patient group. It also compounds the confusion doctors have about the full spectrum of biological abnormalities seen in ME as it moves the medical community’s focus toward the vague symptom of PEM/PESE.
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Source: https://me-international.org/en/blog/clarity-for-all/ as quoted in DX Revision Watch's earlier post
I disagree with that. ME, CFS, and ME/CFS are just different names for the same thing. And a code for PEM is useful for people experiencing PEM not long enough to qualify for an ME diagnosis, like in LC.
 
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Dolphin said:
...During the revision of ICD-11, a number of proposals were received arguing for the re-positioning of chronic fatigue syndrome from its current position to the Chapter 01: Certain infectious or parasitic diseases...

...Literature review and findings
In response to the proposals, WHO conducted an extensive literature review of research relating to chronic fatigue. The review found that there remains insufficient evidence to classify chronic fatigue as an infectious disease, at this time.

Source of quoted extract: WHO, FAQ Chronic fatigue syndrome
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The above are odd statements.

There is no evidence in the archives of the ICD-11 Proposal Mechanism of any requests for relocating "chronic fatigue syndrome" to Chapter 01: Certain infectious or parasitic diseases.

If any such proposals had been submitted to WHO Revision at any point during the development process between 2007 and 2019, they must have been submitted directly to ICD-11 Revision and ICD-11 Revision must have responded directly to whichever individuals or bodies had submitted these requests, without making their rejection responses publicly available, since they are not archived in the Proposal Mechanism (which is the official channel for submitting proposals).

I note the FAQ makes no mention at all of Dr Dua's (WHO, former secretariat to Topic Advisory Group for Neurology) November 2017 proposal that "chronic fatigue syndrome" should be deleted from the Diseases of the nervous system chapter and relocated under the Symptoms, signs chapter, as a child of Symptoms, signs or clinical findings of the musculoskeletal system - a proposal that ICD-11 Revision had rejected, publicly, via the Proposal Mechanism, in November 2019.


ICD-11 had posted the following Rationale statement on the Proposal Mechanism in response to Chapman & Dimmock (March 2017); Dr Lily Chu on behalf of IACFS/ME (March 2017); and Dr Tarun Dua (November 2017) when rejecting their respective submissions:

Rationale for decision:

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

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

"Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter. The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision." Team3 WHO 2019-Mar-04 - 22:52 UTC


That statement contains no allusions to any earlier proposals for relocating "chronic fatigue syndrome" to Chapter 01: Certain infectious or parasitic diseases, nor the source of these apparent proposals.
 
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RedFox said:
I disagree with you. ME, CFS, and ME/CFS are just different names for the same thing. And a code for PEM is useful for people experiencing PEM not long enough to qualify for an ME diagnosis, like in LC.
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To clarify, the text you are responding to was authored by Colleen Steckel, Independent US advocate - not authored by me.
 
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