PEM symptom code proposal - a dog's breakfast

Deadline to comment to U.S. CDC is November 15

Nov 10, 2023

March 16, 2024 UPDATE

Based on the following post on X (twitter), the proposal to add a PEM symptom code to the US ICD codes has been tabled at this time.

I view this as a positive outcome. See issues explained in original article below.

Patient-Led Research Collaborative (@patientled) posted on March 8, 2024.

Update: Unfortunately the ICD-10-CM code for PEM/PESE was not approved by CDC for implementation in Oct 2024. It will not be revisited at the March 2024 meeting due to lack of consensus on coding placement and additions, but it is possible it could be revisited in the future 1/
Huge thank you to everyone who submitted comments in support last fall! If PLRC presents a code for PEM/PESE in future meetings, we’ll share the proposed code and coding structure as soon as it is finalized as we’ve done in meetings past. /2

It sounds like the PLRC may consider resubmitting a code for PEM/PESE in the future. If anyone becomes aware that this is happening, please let me know.

Original post

If you are reading this before Nov 15, 2024 please consider sending a comment to email: nchsicd10CM@cdc.gov

(If you are reading this after the deadline, there is information here that applies to what is happening now with the current codes and discusses what happens if the proposal is adopted.)

I have sent the following comment.

Re: addition of code R68.85 to ICD-10-CM
I do not support adding the code R68.85 (PEM/PESE) to the ICD-10-CM diagnosis codes.
I advocate for our coding system to improve tracking of the distinct disease myalgic encephalomyelitis.
Based on my decades of experience with this disease and having worked with many medical professionals to properly code my own case, I think the result of implementing this proposal risks losing the ability to track myalgic encephalomyelitis.
I urge the committee to consider alternative options to more effectively track those with Long COVID who have PEM that will not complicate diagnostic coding of ME. Possibly add a code under the Long COVID code (U09. 9) to stratify out those patients who have Long COVID + PEM without requiring a six month wait.
Sincerely,
Colleen Steckel
34 year patient with M.E. / independent advocate

All are welcome to copy any of what I have written for your own submission.

Anyone in the world can submit comments. What happens in the United States often follows suit in other countries.

If approved, the symptom code for post exertional malaise would become effective October 1, 2024.

Red australian cattle dog resting on grass — Our dog Fancy is no longer with us, but many fond memories remain.

Because this situation is complicated, I created a bullet list to provide an overview of what follows.

A code for PEM/PESE symptom is being considered by U.S. CDC to be added to 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.

Why comment?

It is important for the historical record that there is evidence the CDC has feedback reflecting concerns about how their actions impact our M.E. community. Because of the way the CDC handled the presentation of the proposal, advocates in queue during the meeting were not permitted to speak.

Overall, there has been a lack of opportunity for public engagement open to all stakeholders about this matter. It is important that sufficient public discourse takes place before implementing a proposal that will affect millions of Americans.

Links to the agenda and meeting presentation from Sept 12 & 13 can be found HERE. (PEM proposal starts on page 109 of the packet)

The more you know…

There have been several helpful discussions about this topic on X (Twitter) including this thread by DX Revision Watch and on Science 4 M.E. HERE.

Concerns discussed in previous articles about the original proposal are still valid.

See the following articles from myself and long time M.E. advocate Eileen Holderman:

Along with the concerns previously noted about how PEM could be added to more common conditions like POTS, this newer proposal specifically suggests diagnosing people with G93.31 (Postviral fatigue syndrome) or G93.39 (other post infection and related fatigue syndromes) with the PEM code.

Considering how confusing this mess is, I can see doctors choosing this easier approach and completely avoiding the G93.32 diagnosis which would essentially “disappear” people with M.E.

I especially appreciate this explanation from Suzy Chapman (dx revision watch) which inspired the title "a dog's breakfast" found HERE.

“Significant changes to the G93.3 code block were implemented in October 2022. These proposed additional revisions will likely present a challenge for clinicians, coders and insurers to navigate. I have described the proposed code sets as a "dog's breakfast" and I stand by that.”

Myths about PEM code proposal

If I have a G93.32 diagnosis for M.E., M.E./CFS or CFS, will my Dr add the PEM code to my records?
No
G93.32 is understood by the CDC to already have PEM as a symptom. Therefore that PEM symptom code cannot be used in conjunction with that dx code.
Is PEM only seen in M.E./CFS?
No
PEM is seen in a portion of patients diagnosed with Long COVID.
PEM is also listed as happening in other conditions. See list HERE.

I think we need research to determine if the "PEM" in those other conditions is akin to what is experienced in Myalgic Encephalomyelitis. I think adding a PEM code before that has been determined will muddy the waters as to who has the post exertion symptom exacerbation we experience.
Is PEM exactly the same as post-exertional neuroimmune exhaustion?
No
The description of these 2 symptoms are different. See article about that HERE.
Will this new code proposal include post-exertional neuroimmune exhaustion?
No
This symptom was removed from the original proposal.

A fixable mess?

The CDC has created a mess of the coding system when it comes to ME. See my article, International Classification of Diseases (ICD) codes: Why do they matter?, I think adding a PEM symptom code will compound this mess.

Health record companies have taken the CDC guidance and created an even bigger mess.

For example, EPIC added conditions not specified in the G93.32 coding by the CDC. The conditions that don’t include post-exertional malaise are in conflict with the premise of the proposal that PEM should not be coded with G93.32 because PEM is always seen in conditions diagnosed under the G93.32 code.

CFS as defined by Fukuda does NOT require PEM, as well as Long COVID (Post-COVID-19) or “chronic fatigue”

The following are conditions that the EPIC health record’s system includes under G93.32 that I don’t think include PEM.

CFS (chronic fatigue syndrome)
Chronic fatigue disorder
Chronic fatigue syndrome with Fibromyalgia (M79.7)
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 CDC and EPIC also means there is no way to track how many contract or die from M.E.

If doctors are educated that having a G93.32 code is an indicator a person has PEM, they will incorrectly assume that all those in the list also have PEM.

I am also aware that Athena (another health records system) automatically applies the label chronic fatigue syndrome when doctors input G93.32 into their system. And yet the Fukuda definition does NOT require PEM.

I think the CDC needs to reevaluate the way the distinct disease M.E. is coded.

We need doctors to understand that CFS and M.E./CFS are not the exact same as M.E.

See my previous articles here about the differences.

Whatever happens with this code mess, we need better education and research that is specific to myalgic encephalomyelitis. I continue to recommend the materials based on the International Consensus Criteria (ICC). See M.E.-I.C.C. Info Table of Contents.

For all the reasons stated above, I oppose this harmful proposal. Please send in your comments in opposition to adding a PEM code to the U.S. ICD codes.

Colleen

PS: My apologies for the late notice about this deadline. Understanding the issues and writing this article took up much of the 60 days allotted to respond. 60 days probably seems like plenty of time to respond for the average person... it isn't adequate time for someone with M.E.

Information provided here or in comments is not to be considered medical advice

View from the Trenches of Myalgic Encephalomyelitis

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