Why Is No One Talking About Long COVID?

Over six years into the COVID-19 pandemic, its lingering impacts have been largely overlooked. In March 2024, approximately 17 million U.S. adults (7% of the population) reported experiencing symptoms associated with long COVID, a condition characterized by persistent symptoms for three months or more after infection. This chronic illness can impact any bodily system or organ, leading to symptoms such as fatigue, mental fog, concentration difficulties, severe exhaustion post-exercise, dizziness and irregular heartbeat.

These symptoms often hinder individuals from performing work or attending school, resulting in substantial disability comparable to diseases like Alzheimer's and asthma. Beyond immediate patient and family concerns, long COVID incurs significant economic losses, with economists estimating over $3 trillion in societal costs over five years due to reduced quality of life, increased medical expenses, and lost productivity.

However, research indicates long COVID might be underdiagnosed. While estimates suggest millions of Americans suffer but go undiagnosed, the annual new diagnoses are far fewer than anticipated. This discrepancy raises concerns about the seriousness of the disease. Some experts deny long COVID's severity, potentially leading to inadequate governmental responses. In February 2025, the Trump administration disbanded the Secretary's Advisory Committee on long COVID and shut down the Office of Long COVID Research and Practice.

Understanding the gap between research findings and clinical observations is crucial for addressing long COVID effectively. We investigated potential reasons for this gap to answer: if millions have the disease, where are they? First, long COVID might be overlooked by patients or misdiagnosed by healthcare providers. The disease's symptoms vary widely in severity, and many may experience mild symptoms that don't significantly affect daily life, leading them to avoid medical attention.

However, 20% to 65% of long COVID patients report debilitating symptoms. Since there's no lab test for long COVID, doctors might misdiagnose symptoms as depression, low thyroid function, vitamin deficiencies, anxiety, or early dementia. Some studies suggest long COVID symptoms can mimic aging-related issues or severe burnout among healthcare workers.

Second, effective treatments exist for long COVID, yet they don't uniformly work for everyone. Options like occupational therapy to manage energy levels and medications like fluvoxamine to alleviate fatigue exist, but their efficacy varies. This lack of a simple cure may frustrate some patients, leading them to self-treat instead of seeking medical help.

Third, how long COVID is measured and diagnosed differs from research methods. Doctors have limited time during patient visits to diagnose, while researchers use detailed criteria and checklists. Classification of long COVID in medical records also varies; many doctors may not recognize the specific diagnosis code or may base it solely on symptomatic criteria, leading to underdiagnosis.

Despite its potential for chronic and severe symptoms, it's important to note that some patients recover. Up to 25% of long COVID patients may fully recuperate within two years. However, accurately determining the current number of Americans with long COVID remains challenging. Despite billions invested in long COVID research and care expansion, the disease receives only a fraction of the funding warranted by its disability impact.

Advocates continue to push for increased funding, considering the estimated $3 trillion economic burden. A unified approach to diagnosing, monitoring, and measuring long COVID at the population level is needed. The CDC should establish a working group to provide evidence-based recommendations for public health responses and medical care, including experts from public health, patient advocacy, and research.

Until such collaborative efforts are in place, there's a risk of either misallocating healthcare resources or neglecting millions who suffer.