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

NCHS proposes Addition of "Use additional code, if applicable, for post-exertional malaise (R68.85)" to both these existing codes:

G93.31 Postviral fatigue syndrome

and the "residual" code:

G93.39 Other post infection and related fatigue syndromes


By what criteria are clinicians supposed to differentiate between G93.31 Postviral fatigue syndrome + PEM and G93.32 ME/CFS?

I do support the PLRC in their non support of these two specific proposals.

From their FAQ:

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.​

 

US ICD-10-CM September 12-13 Coordination and Maintenance Committee.

Topic Packet/Diagnosis Agenda now posted:

https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm

Topic Packet: https://www.cdc.gov/nchs/data/icd/Topic-packet-September-2023-Final.pdf

ICD-10 TIMELINE A timeline of important dates in the ICD-10 process from page 6.


Gulf War Illness from page 74

Post-exertional malaise/post-exertional symptom exacerbation from page 109

Serotonin Syndrome from page 112



November 15, 2023 Deadline for receipt of public comments on proposed new codes and revisions discussed at the September 12-13, 2023 ICD-10 Coordination and Maintenance Committee Meeting being considered for implementation on October 1, 2024.

Comments on the diagnosis proposals presented at the ICD Coordination and Maintenance Committee meeting should be sent to the following email address:

nchsicd10CM@cdc.gov

 

Patient-Led Research Collaborative
@patientled

Todd Davenport
@sunsopeningband

Dx Revision Watch
@dxrevisionwatch
7:39 AM · Sep 10, 2023

At the March C&M meeting, there was no time left for Qs from the public at the end of the PEM presentation because all time was given over to proposal supporter, Dr. Ziyad Al-Aly. I hope any who wish to raise Qs will be allocated time at the forthcoming C&M meeting, on Wednesday.

 

Recordings of the ICD-10-CM Sept 12-13 Coordination and Maintenance Committee Meeting are now available.

CMS has posted links and passwords for the Zoom recordings for meeting Day 1 and Day 2 in this PDF:

https://cms.gov/files/document/recording-september-2023-icd-10-coordination-and-maintenance-committee-meeting.pdf


Day 1 Meeting Recording of procedure code topics led by CMS, followed by diagnosis code topics led by CDC/NCHS:
https://cms.zoomgov.com/rec/share/W3UKW54P1vJApeYkw08y1FYtKBbzYtjYIa4wmeSHvtJuaHKZ3GNgmfn8OqW9i9_G.5ycZFpgcam6s9j5W

Access Password: 7@fa!YLF


Day 2 Meeting Recording of the diagnosis code topics led by CDC/NCHS:
https://cms.zoomgov.com/rec/share/C9qpPmWih9sn2e5PYbZCXsrNvFaFPa75CMUZVtU3TDO_hooRiaXhXmbVVExWfJz.wHHid2qO8Mpd4P7L

Access Password: bij2.PP@

Links to the recordings will also be available at: https://cdc.gov/nchs/icd/icd10cm_maintenance.htm

but are not yet posted. Nor are the presentation slides available yet.


The afternoon session of Day Two starts at 3:29:14 in from the start, directly after the break for lunch, with Lisa McCormick's re-presentation on behalf of the Patient Led Research Collaborative of the proposal for addition of a code for Post-exertional malaise/post-exertional symptom exacerbation

which can be found on Page 109 in the Topic Packet: https://cdc.gov/nchs/data/icd/Topic-packet-September-2023-Final.pdf

A proposal (Topic Packet Page 107) had been previously discussed at the March '23 meeting but a more complex iteration with revisions and additions by NHCS/CDC was re-presented for consideration at the September meeting.



I have prepared a transcript of the PEM presentation from the auto generated transcript that displays on the right hand side of the Zoom screen with the caveat that this has been corrected where obvious mis-transcription errors are evident, but not checked against the audio recording for correction of indecipherable word/phrases.

A copy of this 10 page transcript can be download from Google Drive here and a copy is also attached to this post:

https://docs.google.com/document/d/1mslqOxn0HqUAFke4jH2KxSIbyJaneTKxjUahF4UdEx0/edit?usp=sharing



During the presentation, Lisa McCormick did not raise that the PLRC has publicly stated that it does not support this part of the NCHS/CDC's proposal:

G93.31 Postviral fatigue syndrome
Add Use additional code, if applicable, for post-exertional malaise (R68.85)

or

G93.39 Other post infection and related fatigue syndromes
Add Use additional code, if applicable, for post-exertional malaise (R68.85)

​

Two callers raised questions at the end of the presentation and Dr Todd Davenport also spoke. As with the previous meeting in March, at least one caller who had requested to ask a question was denied a platform.


Submitting comments:

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

Comments on diagnosis proposals should be sent to the following email address:

nchsicd10CM@cdc.gov

 

ICD-10-CM Sept 12-13 Coordination and Maintenance Committee Meeting:

Presentations for the Diagnosis code topics are now available from the CDC site:

https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2023/

> Zip file for all 18 meeting presentations:

https://ftp.cdc.gov/pub/Health_Stat...ICD10CM/2023/September-2023-Presentations.zip

>Open PDF file: Post-Exertional Malaise .pdf

Copy of PEM presentation also attached to this post.

 

https://twitter.com/user/status/1720558324700131657


https://twitter.com/user/status/1720558325891236202


https://twitter.com/user/status/1720558327204020278





The Tweets Texts -

Eileen @TurnItUp4ME

" 1/3 At the September ICD-10-CM C&M meeting, I was shut out by @CDCgov/@NCHStats
to voice my opposition to the proposal to code the symptom, PEM which could harm patients with #MyalgicEncephalomyelitis


"2/3 Orgs like Solve@PlzSolveCFS and one Long Covid org are pushing their proposal, knowing medical personnel could code the symptom, PEM but never circle back to code the actual disease #MyalgicEncephalomyelitis of a prospective/existing patient"


"3/3 Please voice your opposition to this harmful proposal by sending your comments via email to CDC/NCHS: nchsicd10CM@cdc.gov by November 15th."

 

At the March C&M meeting, there was no time left for questions or comments from the public at the end of the PEM presentation because all remaining time was given over to one proposal supporter, Dr. Ziyad Al-Aly.

I had hoped that those who planned to raise questions at the September meeting would be afforded time; but once again, what little time there was given over to supporters of the proposal and to Todd Davenport.

 

https://twitter.com/user/status/1720837709260898383





Tweet text:

Eileen @TurnItUp4ME
"... The symptom, PEM, is already included in the criteria for #MyalgicEncephalomyelitis, so there is no need to separate it out and assign its own code. Doing so could result in a patient getting only a code for PEM, not the disease itself."

 

Its possible for a person to have PEM but not meet the full criteria for ME. Right now, we are not tracking that

 

This is a complicated topic and the function of the ICD codes in the U.S. is not currently working effectively. What the government does and what actually happens in the free market health care system are two different things. Planning appropriately means taking the issue of what is happening in the real world into account.

I try to explain in my article here.

https://colleensteckelmeiccinfo.substack.com/p/pem-symptom-code-proposal-a-dogs

A brief synopsis of what is covered in the article:

• A code for PEM/PESE symptom is being considered by U.S. CDC to be added the US ICD code system. (Does not apply to other countries.)
  
  
• Comments about concerns about implementing this code were blocked during the presentation
  
  
• Deadline for comments is Nov 15 (send to nchsicd10CM@cdc.gov)
  
  
• Submission of comments will put in the permanent a record of the voice of people with M.E.
  
  
• Those with M.E., M.E./CFS or CFS (G93.32) will NOT receive a PEM code
  
  
• Concerns include PEM code will cause doctors to avoid using the G93.32 code thus disappearing M.E.
  
  
• Post-exertional neuroimmune exhaustion P.E.N.E. is NOT included in the proposed code for PEM.
  
  
• Health records system has made a mess of the G93.32 code.

 

Here's a good example. When the G93.3 code block was restructured for implementation from October 2022 and a number of new sub-codes introduced under G93.3, the G93.3 Postviral fatigue syndrome term was revised to:

G93.3 Postviral and related fatigue syndromes

with this instruction inserted underneath:

"Use additional code, if applicable, for post COVID-19 condition, unspecified (U09.9)"


So in theory, the new code, G93.3 Postviral and related fatigue syndromes could also have the additional code, post COVID-19 condition, unspecified (U09.9) added, if applicable to the patient.

However, according to the commercial medical coding information site, https://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.3, the G93.3 code was converted to what is known as a "Parent code" and is now designated thus:

• Non-Billable/Non-Specific Code

• G93.3 should not be used for reimbursement purposes as there are multiple codes below it that contain a greater level of detail.

According to cms.gov (my bold, italic):

MCD
Medicare Coverage Database

Revision History Date Revision History Number Revision History Explanation

10/01/2022 R2
Article revised and published on 10/20/2022 effective for dates of service on and after 10/01/2022 to reflect the Annual ICD-10-CM
Code Updates. ICD-10-CM code G93.3 has been deleted and therefore has been removed from ICD-10-CM Codes that Support Medical Necessity Group 1. The following ICD-10-CM codes have been added to ICD-10-CM Codes that Support Medical Necessity Group 1: G93.31; G93.32; G93.39.​

It's often mentioned by NCHS/CDC officials while presenting proposals at C & M meetings, that NCHS does not concern itself with the way in which the coding industry deploys the codes within ICD-10-CM.

In fact, half way through the PEM proposal presentation on Day Two of the September meeting, CDC's Traci Ramirez said:

"And before I go to the Tabular Modification, I just want to remind everyone on the call that during this meeting we do not address reimbursement or insurance coverage issues, so I just want to make that a reminder for everyone going forward, thank you."


So yes, Colleen is correct to emphasize: "What the government does and what actually happens in the free market health care system are two different things."

 

Yes, it is true that G93.3 is no longer billable because it is now a parent code for which additional subcodes have been added. That means providers have to use one of the subcodes instead.

But NCHS has stated that instructions placed at the parent level G93.3 apply to ALL subcodes under G93.3, including the code for ME/CFS. The instruction is highlighting that post-COVID condition (U09.9) should also be highlighted if appropriate. Given the prevalence of ME in Long COVID, that's a good thing.

This link didn't work. But when I search that page for G93.3, it does state that the parent has been deleted and the three subcodes added.

This site is the Medicare Coverage Database (MCD), maintained by the Center for Medicare Services. The US insurance system is complicated but generally think of Medicare as health insurance used by many retirees, those on disability, and some others.

According to this MCD page, this database contains information related to what’s covered and not covered by Original Medicare." So I'm not surprised that G93.3 was deleted and the other subcodes were added since G93.3 is no longer billable and Medicare would no longer cover it.

 

So what NCHS are saying then is that:

G93.31 Postviral fatigue syndrome

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome

Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis
​

and:

G93.39 Other post infection and related fatigue syndromes​

can all three have "U09.9 Post COVID-19 condition, unspecified" added, if appropriate to the patient.

 

I continue to ask: how are G93.31 Postviral fatigue syndrome and G93.31 Postviral fatigue syndrome + (proposed) R68.85 Post-exertional malaise to be differentiated from G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome and G93.32 Chronic fatigue syndrome?

I don't have the time to do it, but it would be interesting to list all the various permutations that these proposed changes to the G93.3; (proposed) R68.85; and U09.9 code blocks offer clinicians.

 

Do we actually have any meaningful epidemiology that establishes the prevalence of ME in Long COVID ? Indeed how is it that ME/CFS is "prevalent in Long COVID" rather than "Long COVID being prevalent in ME/CFS" ? It all looks horribly circular and open to whatever fanciful or self serving interpretation any clinical provider, researcher or academic authority wants to put on it.

Data on ME/CFS prevalence and incidence is woefully inadequate and we have no idea what recovery rates actually are, something which is key to understanding the number of new cases a year, however it's not unreasonable to suggest that there are between 40,000 and 125,000 new cases of ME/CFS in the US each year. With perhaps 80% COVID infection in the US population how is the incidence of ME/CFS in COVID infected individuals to be distinguished from the background incidence of ME/CFS ? It may satisfy individual patients charging/diagnostic circumstances to get a chargeable US ICD label but it likely renders any data based on that system as unparsable.

The proposals may all be about US ICD, and the intent may be about improving US charging practices, but the US is the World's largest health market and as such has an inordinate global influence and from that we may see any unintended consequences of change in the US, extend well beyond the US health market.

 

I was asked today whether these proposals, if approved, might influence the WHO's international version of ICD-10. The answer is that the WHO's ICD-10 reached the end of its update and revision life with the release of Version: 2019. No further changes can now be made to the international version of ICD-10.

(A few countries, which includes parts of Spain, use an adaptation of the US's ICD-10-CM - so Spanish patients are stakeholders.)

If a code for PEM were approved for addition to ICD-10-CM, at some point a reciprocal Concept code would need to be added to the US edition of the SNOMED CT terminology system for the SNOMED CT US Edition to ICD-10-CM crosswalk code tables. When proposals are submitted to national editions, they are sometimes forwarded on to SNOMED International for consideration for adding first to the International Edition.

If a new SNOMED International Concept code is implemented in the International Edition, it would automatically be absorbed into all the various national editions with their next scheduled update, unless the managers of the individual national extensions specifically elect not to include that new term for use in their country's health system.

 

My comment was only referring to those LongCOVID research studies that have evaluated ME/CFS criteria in Long COVID cohorts. The numbers are all preliminary and vary but some studies have found as many as 50% of the Long COVID patients met ME/CFS criteria.

 

If I am interpreting the proposed coded sets correctly, as set out in the September C & M meeting Topic Packet, the possible choices a clinician might select from are:


G93.31 Postviral fatigue syndrome

G93.31 Postviral fatigue syndrome + U09.9 Post COVID-19 condition, unspecified
G93.31 Postviral fatigue syndrome + R68.85 Post-exertional malaise

G93.39 Other post infection and related fatigue syndromes

G93.39 Other post infection and related fatigue syndromes + U09.9 Post COVID-19 condition, unspecified
G93.39 Other post infection and related fatigue syndromes + R68.85 Post-exertional malaise

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
G93.32 Chronic fatigue syndrome
G93.32 Myalgic encephalomyelitis

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome + U09.9 Post COVID-19 condition, unspecified
G93.32 Chronic fatigue syndrome + U09.9 Post COVID-19 condition, unspecified
G93.32 Myalgic encephalomyelitis + U09.9 Post COVID-19 condition, unspecified

(But note: R68.85 Post-exertional malaise is excluded under G93.32. Both codes cannot be assigned together, as PEM is a cardinal symptom of ME/CFS.)

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

R68.85 Post-exertional malaise

R68.85 Post-exertional malaise + U09.9 COVID-19 condition, unspecified


Source: September 12-13, 2023 Diagnosis Agenda Topic Packet (from page 109):
https://www.cdc.gov/nchs/data/icd/Topic-packet-September-2023-Final.pdf


This is based purely on the options from the three proposed codes sets: G93.3; R68.85; and U09.9. "Long Covid" can have other symptoms coded alongside it (some are listed in the Tabular List section for the U09.9 code) or other diseases coded for, such as POTS or other co-morbidities.

 

I was rather hoping for some refs to epidemiology of post COVID matched to ME/CFS or vice versa - I can't find anything using >2023 data on Google Scholar. There's all sorts stuff (often making wild claims) using data from the early stages of the pandemic but nothing that I can see that gives support to a nosological development. I don't understand what preliminary means in this context nor why preferentially selecting studies is appropriate.

 

Preliminary meant just that. We don't have proper epidemiological studies yet. But we do have some studies that show people with Long COVID meet ME/CFS criteria and we know people with Long COVID are being diagnosed with ME/CFS. Documenting that connection in medical records through ICD codes will help us to understand what the true prevalence actually is.