Chapter 1: The Inclusivity Challenge

I genuinely want to assist individuals grappling with long COVID, but there’s a significant issue at hand. To put it simply, our approach to inclusivity may be counterproductive. A fundamental aspect of studying disease epidemiology is the necessity of a precise case definition. Unfortunately, the current definition of long COVID leaves much to be desired. Recently, the National Academies of Sciences, Engineering, and Medicine (NASEM) released a definition aimed at enhancing “consistency, documentation, and treatment.” This is promising, but let’s examine the definition provided:

“Long COVID is a chronic condition associated with infection, occurring after SARS-CoV-2 infection and lasting for at least three months in a continuous, relapsing, and remitting, or progressive manner, affecting one or more organ systems.”

However, this definition lacks clarity. Symptoms can manifest across any organ system, and they can either be continuous or episodic. Essentially, if you’ve had COVID—an experience that many of us share—and you exhibit any symptom, even one that fluctuates, for three months post-infection, you are categorized as having long COVID. The definition doesn’t clarify that the symptom must be new.

This isn’t to suggest that long COVID isn’t real or that it doesn’t present in various forms. However, such a broad case definition complicates our understanding of the condition, making it difficult to identify effective treatments. It conflates individuals with genuine long COVID with a multitude of others, thus diluting scientific inquiry into the syndrome. A recent study gaining significant media attention claims that one in five individuals may be affected by long COVID, which further emphasizes the difficulties in researching this condition.

The video "Long COVID Has An Inclusivity Problem" explores how the broad definition of long COVID complicates treatment and understanding of the condition.

Chapter 2: Insights from NIH Studies

To delve deeper into the long COVID phenomenon, the NIH utilized 14 ongoing cohort studies. These longitudinal studies track various groups over time, such as the REGARDS study, which assesses cardiovascular risks in the southern US, and the ARIC study, focusing on heart disease in four US communities. The NIH leveraged these existing studies to incorporate questions about COVID-19 into their annual surveys.

Participants were asked, “Do you believe you have had COVID-19?” and “Would you say you are fully recovered now?” Those who reported not being fully recovered were then asked how long it had been since their infection, with anyone indicating longer than 90 days categorized as having long COVID.

This approach relies on self-reported data regarding infection, symptom duration, and recovery. While individual health perceptions are important, the inconsistencies in these self-reports can obscure our understanding of the long COVID syndrome.

The findings were noteworthy: of 4,708 individuals surveyed, 842 (17.9%) had not recovered after 90 days. This study included not only hospitalized patients but also those who self-diagnosed or tested at home, providing a broad reflection of the US population.

Several trends emerged from the data:

1. Recovery times were longer during the initial COVID waves compared to the Omicron wave.
2. Individuals who smoked, those with diabetes, and those who were obese experienced longer recovery times.
3. Generally, the severity of the disease correlated with longer recovery durations, although it was noted that women had extended recovery times despite having lower average illness severity.
4. Vaccination appeared to correlate with shorter recovery times.

This information is intriguing, as it demonstrates that many individuals perceive lingering symptoms following COVID-19. However, it remains unclear whether these symptoms arise from lasting effects of a severe infection or if they indicate an ongoing syndrome—what we refer to as long COVID—that has a physiological basis and could potentially be treated.

The video "Is Long COVID Even Real?" questions the legitimacy of long COVID and its classification, shedding light on the ongoing debate.

In summary, the complexities surrounding long COVID require a more refined case definition. Until we can narrow our focus, we may struggle to progress in understanding this condition. As articulated in "The Incredibles," if everyone has long COVID, then effectively, no one does.