Coding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
New codes give this condition legitimacy and help coders report ME/CFS with specificity.
If a healthcare provider diagnoses a patient with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), how would you code it? The first thing you need to understand is what ME/CFS is, and what it isn’t. The second thing you need to know is that coding for this condition has changed effective Oct. 1, 2022.
What is ME/CFS?
The Institute of Medicine (IOM) published an evidence review of ME/CFS and new diagnostic criteria in 2015, which have since been adopted by the Centers for Disease Control and Prevention (CDC) and many other stakeholders. In addition to the new clinical diagnostic criteria, the IOM recommended a new name, “systemic exertion intolerance disease SEID.” However, the CDC and others chose to adopt the term ME/CFS.
According to the IOM report, ME/CFS is characterized by the hallmark symptoms of post-exertional malaise (PEM), unrefreshing sleep, profound fatigue, and significant impairment in function. Patients also may experience cognitive impairment, orthostatic intolerance (inability to be upright without symptoms), pain, and sensory sensitivity (to light, noise, etc.). Even small amounts of cognitive exertion can worsen symptoms for days, weeks, or sometimes months, resulting in some patients experiencing neurological, immunological, autonomic, and energy metabolism impairment.
It’s estimated that 25 percent of patients with ME/CFS are homebound or bedbound and as many as 75 percent are unable to work or go to school.
Prior to the 2023 update to ICD-10-CM, there was not a specific code for myalgic encephalomyelitis/chronic fatigue syndrome. You may have used ICD-10-CM code R53.82 Chronic fatigue, unspecified, which includes chronic fatigue syndrome. Unfortunately, this lack of specificity made it difficult to track ME/CFS separate from the symptom of chronic fatigue, according to stakeholders at the ICD-10 Coordination and Maintenance Committee meeting, Sept. 14-15, 2021.
Alternatively, you may have used ICD-10-CM code G93.3 Postviral fatigue syndrome (PVFS), which includes benign myalgic encephalomyelitis. Under this classification, however, some doctors declined to diagnose ME when viral illness was not proven, even though, according to IOM criteria, ME can be triggered by both viral and nonviral precipitants. Another issue with using this code was that ME and ME/CFS definitions specify that symptoms should persist for at least six months, while PVFS has no such minimum time requirement.
To remedy the situation, one thought was to have coders separately report both codes, G93.3 and R53.82, when the provider diagnosed ME/CFS. An Excludes1 note for postviral fatigue syndrome prohibited this, however. Not to mention, this did “not capture the name of the disease as specified by the doctor or in clinical guidance and medical education,” stakeholders said. Instead, the code description for G93.3 is revised.
The resulting ICD-10-CM Tabular List changes for fiscal year 2023 are as follows:
Under A85 Other viral encephalitis, not elsewhere classified, the Excludes1 is revised from “benign myalgic encephalomyelitis (G93.3)” to “myalgic encephalomyelitis (G93.32).” This same revision was made to the Excludes2 note under G04 Encephalitis, myelitis and encephalomyelitis.
Under G93 Other disorders of brain, G93.3 is revised to “Postviral and related fatigue syndromes,” the inclusion term “benign myalgic encephalomyelitis” is deleted, and “neurasthenia (F48.8)” is added to the Excludes1 note.
New codes include G93.31 Postviral fatigue syndrome, G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome, which includes chronic fatigue syndrome, ME/CFS, and ME, and G93.39 Other post infection and related fatigue syndromes.
Under R53.82, “chronic fatigue syndrome NOS” is deleted as an inclusion term; G93.32 and G93.39 are added to the Excludes1 note; and the code for postviral fatigue syndrome is revised in the Excludes1 note to the new expanded code, G93.31.
Revisions to the ICD-10-CM Index were made to reflect these changes. Additions include postbacterial fatigue and postinfectious fatigue, coded with G93.39. Also added to the Index is SEID (systemic exertion intolerance disease), coded with G93.32, although you won’t find SEID in the Tabular List.
Spread the News
Make sure your providers are aware of these new and revised codes for ME and CFS to help improve care for patients with ME/CFS through improved data tracking.
Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2015. https://nap.nationalacademies.org/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness
ICD-10 Coordination and Maintenance Committee meeting, Sept. 14-15, 2021.