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

I stumbled across the FAQ page at

https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome

several weeks ago and was tempted to contact WHO and request information on which individuals/bodies had "[argued] for the re-positioning of chronic fatigue syndrome from its current position to the Chapter 01: Certain infectious or parasitic diseases", the dates on which these requests were submitted; when they were rejected and copies of rejection statements. (The development process has been touted as an open and transparent process.)

But getting information out of the WHO and a meaningful response is like pulling teeth; I decided not to bother.

 

Note that the most recent (and final) version of the WHO's ICD-10 is Version 2019: https://icd.who.int/browse10/2019/en not Version 2010, for which links have been given above.

 

I have asked Dr Tedros Ghebreyesus, today:

Why does this FAQ: https://who.int/standards/classification s/frequently-asked-questions/chronic-fatigue-syndrome
state: "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." for which there is no evidence of these proposals in the Proposal Mechanism whilst failing to mention that TAG Neurology and WHO's Dr Dua had proposed in November 2017 to delete PVFS/ME/CFS from its legacy Neurology chapter and relocate under the Symptoms, signs chapter?

 

2024 release of ICD-10-CM:

The files for the FY2024 ICD-10-CM codes have been posted on the CDC's website.

These codes are to be used from October 1, 2023 through September 30, 2024 and replace the FY2023 – April 1, release.

The FY2024 Guideline document, Addenda, Tabular List, Index etc can be downloaded as standalone PDFs, or in some cases, within Zip files from:

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

For ease of access, PDF copies of the Tabular List and Index can be downloaded from my website:

FY2024 Tabular List [7MB]:
https://dxrevisionwatch.files.wordpress.com/2023/07/icd10cm-tabular-2024.pdf

FY2024 Index [9MB]:
https://dxrevisionwatch.files.wordpress.com/2023/07/icd10cm-index-2024.pdf


Update on status of March 2023 proposal for a unique code for PEM/PESE to be added to Symptoms, signs chapter:

There has been no approval and implementation of the proposal for a unique code for PEM/PESE to be added to the Symptoms, signs chapter of ICD-10-CM for the FY2024 release. (It had been clarified by CDC's Traci Ramirez, in March, that the proposal submitted by the Patient-Led Research Collaboration was not being considered for fast track implementation.)

According to the Patient-Led Research Collaborative, the proposal to add a code for PEM/PESE is going to be revisited at the September '23 meeting "with minor changes in response to feedback".

P-LRC has said they do not yet have final details on what the changes presented at the next meeting will be. It is also unclear to me at this point whether the revised proposals are going to be presented by CDC, or by both CDC and on behalf of the P-LRC.

The next virtual meeting of the ICD-10-CM C&M Committee is scheduled for September 12 – 13.

The Tentative Agenda is usually released a month or so before the meeting via a Notice in the Federal Register and is also posted on the CDC's ICD-10-CM C&M Upcoming Meetings page. The Tentative Agenda only lists some of the topics for consideration at the next meeting and no rationales or setting out of proposed coding structures.

The full agenda (Topic Packet) which should include the full list of topics for discussion and the proposal rationales is usually released a day or two before meeting Day 1. So this may not be publicly available until Monday, 11 September.

It's unclear at this point whether P-LRC will be informed of the proposed revisions prior to the meeting and if so, whether they will publicly circulate what they know in good time, in order that advocacy groups, patients and their carers might review these proposed revisions prior to the meeting taking place.

 

[US] NCVHS ICD-11 Workgroup Meeting

An Expert Roundtable Meeting of the National Committee on Vital and Health Statistics (NCVHS) Workgroup on Timely and Strategic Action to Inform ICD-11 Policy was held yesterday, August 3:

https://ncvhs.hhs.gov/meetings/icd-11-workgroup-meeting/

The meeting was accessible in-person and virtually (for which registration was required).

At some point, a full transcript and recordings of the meeting are anticipated to be posted on the NCVHS meeting pages. In the meantime, if anyone is interested in following the work of the NCVHS ICD-11 Workgroup these meeting materials are available to download:

• Responses to RFI-NCVHS Workgroup on Timely and Strategic Action to Improve ICD-11 Policy
• Agenda-ICD 11 Expert Roundtable Meeting-August 3 2023
• Participant List-NCVHS ICD-11 WG-August 3 2023
• Presentation-NCVHS ICD-11 WG-RFI Responses Summary-Romano
• Presentation-NCVHS ICD-11 WG-Priorities-Ferguson
• Presentation-NCVHS ICD-11 WG-Meeting Design-Ferguson_Watzlaf
• Presentation-NCVHS ICD-11 WG-Continuity Sustainability-Fenton
• Presentation-NCVHS ICD-11 WG-Learned-Fung: A practical strategy to use the ICD-11 for morbidity coding in the United States without a clinical modification, August 3, 2023, Kin-Wah Fung, Julia Xu, Olivier Bodenreider, Donna Pickett, Shannon McConnell-Lamptey.

• Bios-NCVHS ICD-11 WG-August 3 2023
• Presentation-NCVHS ICD-11 WG-Summary of Small Group Discussions

 

Upcoming Meeting: ICD-10-CM Coordination and Maintenance Committee, September 12 – 13, 2023

https://federalregister.gov/documents/2023/07/31/2023-16105/national-center-for-health-statistics-icd-10-coordination-and-maintenance-committee

Federal Register
Publication Date: 07/31/2023

Document Number: 2023-16105
PDF: https://www.govinfo.gov/content/pkg/FR-2023-07-31/pdf/2023-16105.pdf

Tentative Agenda

(Note the Tentative Agenda may not include all the topics that will be scheduled for discussion in September. The September meeting Topic Packet is expected to be published between Friday, 8 September - Monday, 11 Sept.)

Extract:



The proposal for adding a Symptoms, signs chapter code for PEM/PENE which was submitted at the March 2023 meeting is being re-presented with revisions at this forthcoming September meeting. Not yet known what revisions are being proposed or who will be presenting these revisions, ie CDC or the original submitters, P-LRC.

See Post #682 for PDF of March 2023 Topic Packet and PDF of March 2023 slide presentation for PEM/PENE proposal.

 

[US] Upcoming virtual meeting: ICD-10-CM Coordination and Maintenance Committee Sept 12-13

Register in advance: https://cms.zoomgov.com/webinar/register/WN_lWLKuwKzQU6iJdvcDvXhdA

After registering, you will receive a confirmation email containing information about joining the virtual meeting.

PDF for Tentative Agenda: https://cdc.gov/nchs/data/icd/Tentative-Agenda-September-2023.pdf


Full Agenda (Topic Packet), meeting materials, presentation slides are usually posted on the CDC's C&M page one to three days in advance of meeting Day One. Topic Packet also contains proposal rationales and sets out proposed new codes/proposed changes to existing code structure.

The proposal for addition of a new Symptoms, signs chapter code for PEM, PESE, which was submitted for consideration at the March meeting, is being re-presented with revisions at this forthcoming September meeting. As soon as the Topic Packet is available, I will post it.

Unknown yet what revisions to the PEM proposal, as it had stood in March, are being proposed by NCHS/CDC or who will be re-presenting, ie CDC or Patient Led Research Collaborative, or both.

 

Update on proposals for addition of a code for PEM to the US's ICD-10-CM:

The Patient-Led Research Collaborative (PLRC) has released a revised set of proposals scheduled to be presented on Day Two of the September 13 meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee.

The Topic Packet for this meeting and meeting materials are expected to be posted a day or so before meeting Day One.

Lisa McCorkell and Todd Davenport will be presenting on September 13 (scheduled for 12:10pm ET*). Public comments will be open following for 60 days following the meeting.

*Agenda items do not always run to time and may be presented out of order to their listing on the Agenda.


The previous proposals as presented at the March 7-8, 2023 meeting were:




NCHS has revised the proposals for re-presentation at the September meeting to these:

Extract: https://docs.google.com/document/d/1D1f9p2Qt-q2KAi7zyxlvF1AdliOvrwXCc_FIc-j_les/edit




Cont/

 

/continued from previous post #708:


The Patient-Led Research Collaborative has published this document setting out the rationale for its proposals (and for the NCHS's proposed revisions):

https://docs.google.com/document/d/1D1f9p2Qt-q2KAi7zyxlvF1AdliOvrwXCc_FIc-j_les/edit

They have also published a revised FAQ document:

https://docs.google.com/document/d/1xyzd1T4ortptprzkxusc1NvsJbV1ioEMk36zIBMEzn8/edit


I am not going to reproduce the rationale document in full here or the full FAQ document but would like to highlight the following extracts from the FAQ (my highlighting in brown):

Extract:

https://docs.google.com/document/d/1xyzd1T4ortptprzkxusc1NvsJbV1ioEMk36zIBMEzn8/edit


4. If it is introduced as a code, how should the code for the symptom of PEM/PESE be used?

The tabular modifications for the proposed PEM/PESE code R68.85 include “Code First,” “Use additional code, if applicable,” and “Excludes1” coding instructions that were added by the National Center for Health Statistics (NCHS) in response to feedback following the last meeting.

Currently, PLRC is not supportive of the “Code first” and “Use additional code, if applicable” additions with G93.31 (Postviral fatigue syndrome) and G93.39 (Other post infection and related fatigue syndromes) because, to our knowledge, these additions are not supported by robust evidence. However, we look forward to seeing what feedback other stakeholders have on this aspect of the proposal.

NCHS has alerted PLRC that the addition of the “Excludes1” instructions on G93.32 (Myalgic encephalomyelitis/chronic fatigue syndrome) will assist in ensuring coders follow the rule that a symptom from the ICD-10-CM Signs and Symptoms chapter should not be coded when that symptom is a core part of a diagnosed condition. Examples of symptoms in this chapter include pain, fever, chronic fatigue, cough, and cognitive difficulties. Therefore, since a diagnosis of ME/CFS requires PEM, the provider should code the condition ME/CFS (G93.32) but not code the symptom PEM/PESE.

In the case of Long COVID, if a person has Long COVID and PEM and also meets ME/CFS criteria, the provider would code Long COVID (U09.9) and ME/CFS but not PEM/PESE. But if the person has Long COVID and PEM but does not meet ME/CFS criteria, the provider would code Long COVID (U09.9) and PEM/PESE. If at a later visit, the patient meets criteria for ME/CFS, the provider would then code ME/CFS and Long COVID but not PEM/PESE.

We do not know at this point if NCHS will provide specific instructions for this code outside of these proposed tabular modifications.

5. Will the code be limited to people who have Long COVID?

No. Anyone who experiences PEM/PESE could have the code assigned to them, as long as they don’t meet the diagnostic criteria for ME/CFS (which has PEM as a core part of that condition).

However, to date, robust clinical evidence has shown PEM/PESE as a distinctive symptom notably observed in people with ME/CFS and Long COVID. Clinicians will need to apply best practice in identifying and diagnosing this symptom. Given the implications that PEM/PESE has for treatment recommendations, it’s important for clinical coordination that doctors document the presence of PEM/PESE and that a specific code is available for that when ME/CFS is not present.

[Extract ends] See full FAQ and rational document​

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


Comment: My concern remains that prospective G93.32 ME and ME/CFS patients may be at risk of being assigned the proposed symptom code R68.85 Post-exertional malaise but not have their cases subsequently reviewed by their clinicians and revised to G93.32; or that the onus would be on the patient to return to the clinician and negotiate for the status of their diagnosis to be reviewed.

I remain concerned that being stranded in the hinterland of the Symptoms, signs chapter may impact on what treatments insurers are prepared to consider and approve and may result in other unintended consequences for the patient.

Moreover, since 2022, there have been radical changes to the G93.3 code structure, which has included introducing sub-codes under G93.3 and relocating CFS from the R chapter to code G93.32 (to which ME; ME/CFS; and CFS are now all coded and to which SEID is indexed).

What is currently being proposed for PEM and these additional "Code first" and "Use additional code, if applicable" and "Excludes1" insertions being suggested by NCHS to some of the existing G93.3 sub-codes (some of which the PLRC do not support, themselves) risks rendering the structure of the G93.3 parent class and its sub-codes a dog's breakfast that clinicians will feel daunted by and reluctant to navigate.

 

Thank you very much Suzy for keeping track of this and reporting on this. And especially for your *Comment* on the coding proposals.

 

November 15, 2023 is the Deadline for receipt of public comments on proposed new codes and revisions being considered at the September meeting for implementation on October 1, 2024.

The PLRC's FAQ says: "If the ICD code is accepted, it will be implemented October 1, 2024." So the deadline for receipt of public comment is November 15 (around 63 days from the date of the meeting).

Comments on the diagnosis proposals presented at the September meeting should be sent to the following email address: nchsicd10CM@cdc.gov

You can pre-register to listen to the meeting here:

https://cms.zoomgov.com/webinar/register/WN_lWLKuwKzQU6iJdvcDvXhdA

After registering, you will receive a confirmation email containing information about joining the meeting.

 

I'm glad that Todd Davenport is part of this. He is as good an ally and as professional as it gets.

I'm not especially concerned with the possibility of coding for PEM not leading to coding for ME, people aren't being coded for ME already, and encouraging the use of the PEM code can easily backtrack to an ME diagnosis. Health data is not about go get any smaller. The mess is in how medicine do their thing, we can't really force them to improve on the entire system before we get a small bit of usefulness out of it.

I find that this thread summed it up well:

The argument for a PEM/PESE ICD-10-CM code just keeps making itself. The constant studies looking at scattershots of Long Covid signs and symptoms like nothing has existed before to organize them need the organization that post-exertional behavior might provide.

You know, forests and trees and stuff.

I mean, how many barely statistically-coherent studies published in prestige journals is it gonna take before we have a major replication crisis that adds to the “mystery” narrative surrounding this illness? We need better data gathering tools, and we need them fast.

Look, I’m not here to cause confusion for identifying ME. It has its own code. I’m interested in making sure we find people with PEM/PESE who don’t meet criteria (yet?) for ME but may be diagnosed with some other syndrome. Paraphrasing Hickam, people can have more than one thing.

When the alternative to a PEM/PESE ICD-10-CM code is our current reality of 1. disorganized EHR studies and 2. no prompt for clinicians to consider ME as a complementary or competing diagnosis leading to its under-recognition, then I favor doing something about that.

As a clinician, I imagine the power of having a PEM/PESE modifier for Post Covid Condition, post-infectious fatigue, and POTS. That’s powerful information that instantly makes phenotyping easier and can help us point people toward treatments that might prevent more deterioration.

Having a PEM/PESE ICD-10-CM code doesn’t fix everything overnight obviously. Just having a code doesn’t obviate the need to teach clinicians how to use it. Having a code doesn’t change we need to update consensus on operational definitions. But we absolutely know enough to start.

It is important to avoid letting perfect be the enemy of very good.​

Medicine is broken in ways that explicitly work against us. This is as good as we are going to get for now. They are not going to change any time soon, and especially are not going to bend that broken system to accommodate us. If anything, they break it so they can fuck with us.

 

As fast as we are losing new ME diagnoses to FND - we could lose new ME diagnoses to ICD PEM. ... medics go to lengths to not diagnose ME.

 

Well, they're not coding for ME. Or even CFS. And we're not fixing this broken ass profession any time soon.

There's no requirement to wait 6 months, or any arbitrary period, for PEM, and that's often used as an excuse for ME.

It's disturbing how unmotivated this profession is at knowing. Just knowing. They don't want to know certain things. Coming from an engineering profession, it never ceases to shock me. How they even manage to do anything with this mindset.

It's also disturbing just how absurdly superior AI systems will be at it, including the human side. Can't happen soon enough, and will do away with a lot of this silliness.

 

Clinicians know that they are to code the disease, not the symptom, when that symptom is a core part of the disease. So the only way I could see a doctor diagnosing PEM and not ME/CFS in when ME/CFS exists is if the doctor knows about and is able to identify PEM - and yet does not know about ME/CFS. I think this is highly unlikely. As @rvallee notes, more likely is that doctors are not recognizing either and this not coding either. Or that because they are now starting to recognize PEM, they are also starting to recognize ME.

As PLRC's document makes clear, the Code First/Use Additional Code Instructions only applies to G93.31 (postviral fatigue syndrome) and G93.39 (other postinfection and related fatigue syndromes). Those instructions do not apply to G93.3 or G93.32.

So how do you believe this will render the structure of the parent class or G93.32 a dog's breakfast?

As you know, the US had unilaterally moved CFS from the neurological chapter of ICD-10 where WHO has placed it, to the symptom chapter of ICD-10-CM where CFS was equated to the symptom of chronic fatigue. This was a real problem for US patients - people with ME/CFS were being coded as having the symptom of chronic fatigue and did not show up separately from the symptom of chronic fatigue in tracking systems. We didn't track cases of ME/CFS from October 2015 when ICD-10-CM was implemented, until October 2022 when this error was fixed.

No other country had done this. In ICD-10 and the clinical modifications in other countries, both CFS and ME are in the neurological chapter. And notably, in the ICD-10, ME and CFS have the same code.

 

I don't know what your point is, Mary.

I mentioned CFS being relocated under the G93.3 parent as one example of the substantial changes made to the G93.3 parent class in the last couple of years - for which providers and payers have had to educate themselves.

In my submission in response to the September 2018 proposals, I supported the NCHS's proposal to relocate CFS under G93.3. I also supported the 2018 proposal to create three discrete sub-codes for PVFS; ME; and CFS.

What I did not support was the 2018 proposal to also include SEID under G93.3 and assign a discrete sub-code (as "G93.30 Systemic exertion intolerance disease, unspecified SEID, NOS").

Nor did I support the proposal for a "G93.39 Other postviral and related fatigue syndromes".

But as far as relocation of CFS to the G93.3 parent (bringing ICD-10-CM back in line with the WHO's international classification) - I supported that publicly and in my feedback submission. So I am struggling to understand what your point is.

 

Extract from the PLRC's most recent FAQ document:

9. Would an ICD-10-CM code for PEM/PESE affect the chances of a patient being given an ME/CFS diagnosis when they meet ME/CFS criteria?

If a healthcare provider stops the diagnosis process when they recognize PEM/PESE and does not check the full ME/CFS criteria, that would be a mistake on the part of the doctor. Fixing this issue requires medical education, not withholding the code for PEM/PESE.
​

This is my concern, that a patient presenting in the early months of ME/CFS might potentially be assigned a symptom code for PEM but is not reviewed further down the line for removal of the PEM symptom code and assignment of the G93.32 code.

PEM is not restricted to ME/CFS and LongCovid. A growing number of diseases and conditions are listing PEM as a symptom.


Extract from the PLRC's most recent FAQ document:

4. If it is introduced as a code, how should the code for the symptom of PEM/PESE be used?

. . .We do not know at this point if NCHS will provide specific instructions for this code outside of these proposed tabular modifications.​

This is a concern.

Other than Chapter 5 Mental, Behavioral and Neurodevelopmental disorders, instructions for the application of codes are not usually included within other chapters of ICD-10-CM.

 

I did not mention G93.32 specifically. What I said was:

So I am talking here about the G93.3 parent class, in its entirety.


This is how the G93.3 parent class currently stands since the 2022 changes:




This is what is being proposed at the September C & M meeting:



I stand by my opinion that the above is a dog's breakfast.