For Many Patients With Long COVID, Additional Diagnoses Like ME/CFS Follow

A deep dive into long COVID demographics, overlapping conditions, and the role of integrated and comprehensive healthcare data.

Long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC), has emerged as a significant and complex challenge in modern healthcare, with both patients and providers largely unsure of the causes or the best approaches to treatment. Over 200 symptoms have been recorded in association with long COVID, some of the more common being significant fatigue, post-exertional malaise, and gastrointestinal and respiratory issues. The multifaceted nature of long COVID complicates both diagnosis and treatment, with a small number of experts serving a growing patient population. While most patients with long COVID recover within a few months, others experience symptoms for years after their initial infection, and many receive additional diagnoses. 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is one such condition, sharing certain key symptoms with chronic long COVID patients. ME/CFS is considered significantly underdiagnosed, underfunded, and undertreated. But the rise of long COVID has had a silver lining in a brining surge of awareness and funding while also helping to improve the stigma heavily associated with chronic fatigue. Conversely, the growing population of long COVID patients has exacerbated a serious shortage of medical experts available to treat ME/CFS and related diseases, as the few ME/CFS specialists, many nearing retirement, have been tasked with helping an overwhelming number of long COVID patients. 

Given the fast-changing landscape of long COVID, we aim to deepen the understanding of long COVID’s prevalence across demographics, focusing on trends in overlapping multisystem conditions like ME/CFS. We used the Patient Journey/Event Occurrence template from  Komodo’s MapView™ solution, which includes diagnoses between January 1, 2022, and December 31, 2023. (Note that diagnosis codes for long COVID were active starting October 21, 2021, and the contemporary ICD-10 code for ME/CFS, G93.32, became available on October 1, 2022. This update was the result of significant advocacy from the ME/CFS community.)

Here is what we found: 

About 0.4% of medically insured people in the U.S. had a diagnosis of long COVID in 2022 or 2023. Older adults, females, and White individuals were more likely to be diagnosed with long COVID.
In Komodo's data, 392 in 100,000 medically insured people were found to have a long COVID diagnosis. Looking at adults alone, this rate jumps to 479 per 100,000. In alignment with previous research, the highest rates of long COVID were seen among females (500 per 100,000) and those age 65 and older (774 per 100,000). 

White people were about 60% more likely than all other racial and ethnic census groups to receive a long COVID diagnosis. After adjusting for race and ethnicity by population, White individuals were about 84% more likely to receive a long COVID diagnosis than Hispanic and Latino individuals, 89% more likely than Asian or Pacific Islander individuals, and 42% more likely than Black individuals. This is in contrast to research that has found that Black and Hispanic individuals are more likely to report symptoms of long COVID compared to White individuals. This discrepancy likely reflects race-based disparities in care access and quality; it also may be influenced by several race- and ethnicity-based factors such as differences in overall health and life expectancy. 

Among patients diagnosed with long COVID in 2022 or 2023, 11% received a chronic fatigue diagnosis in the six months prior to or following. 
Among those with a long COVID diagnosis, 2% had a diagnosis of ME/CFS and 9% had a diagnosis of another fatigue syndrome, including postviral- and postinfection-related fatigue syndromes and unspecified chronic fatigue. It should be noted that overall rates of chronic fatigue are likely higher than what is reported here, as these conditions are considered largely  underdiagnosed. Additionally, ME/CFS is not typically diagnosed until key symptoms have been present for at least six months, while long COVID is defined as postinfection symptoms that have been present for at least three months.

We also looked at a group of diagnoses linked to long COVID and found that, in the six months prior to or following a long COVID diagnosis, 0.1% was diagnosed with mast cell activation syndrome, 0.3% with Ehlers-Danlos syndrome, 4.4% with fibromyalgia, and 0.8% with either postural orthostatic tachycardia syndrome (POTS) or, more broadly, dysautonomia. 

Among patients diagnosed with ME/CFS in 2022, nearly half (47%) also had a long COVID diagnosis. This number dropped to almost one quarter (23%) in 2023. 
In the three months of 2022 when the new ME/CFS ICD code became available (October-December), 47% of those diagnosed also had a long COVID diagnosis. In 2023, that rate dropped to 23%. 

Many patients with both long COVID and ME/CFS received both diagnoses simultaneously or in quick succession.
Looking at the journey of patients diagnosed concurrently with long COVID and at least one of ME/CFS, chronic fatigue, dysautonomia or POTS, fibromyalgia, and mast cell activation syndrome, a diagnostic peak was seen in all conditions simultaneously with, or up to 30 days following, a long COVID diagnosis. The strongest temporal associations were seen in chronic fatigue, dysautonomia or POTS, and ME/CFS, and the weakest in fibromyalgia, where diagnoses were relatively stable both before and after a long COVID diagnosis. Ehlers-Danlos syndrome and mast cell activation syndrome showed moderate increases around the long COVID diagnosis. 

One in 5 cases of long COVID was diagnosed by a nurse practitioner (NP) or physician assistant (PA), and family physicians played the largest role in treatment.  
Among long COVID cases, 42% were diagnosed by internal medicine physicians and 24% by family physicians. Looking at all healthcare visits by patients diagnosed with long COVID, 58% fell within family medicine or internal medicine. 

These findings emphasize the necessity for more specialist providers and greater awareness and education among all healthcare providers to improve diagnosis and treatment strategies. Integrated care models are crucial for effectively addressing the broad spectrum of symptoms associated with long COVID and its related conditions and to minimize the burden on patients. Uncovering the needed answers to help patients with these conditions will also require a multifaceted approach that combines experts and data across multiple specialties.

Patients often face complicated diagnostic and treatment journeys and frequently rely on self-advocacy. This means that there is an increasing need for comprehensive healthcare data that integrates disparate and siloed patient information to connect and encompass longitudinal patient journeys. This is especially true in therapeutic areas that are evolving as rapidly as the long COVID landscape, where high-quality, real-time data is essential to inform providers about advances in methods, locations, and timing ofr diagnosing and treating these conditions. Up-to-date trend visibility is key to informing approaches and clinical guidelines, ensuring that they most accurately reflect the fast-changing reality faced by patients.

Check out some of our recent stories on other recent healthcare trends like the rise in prescriptions for ADHD treatment and new diagnoses of colorectal cancer. 

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