What you need to know

The federal government’s Household Pulse survey estimates that approximately 10% of people infected with SARS-CoV-2 — the virus that causes COVID-19 — live with ongoing, relapsing, or new symptoms that can affect nearly every tissue and organ in the body. These health problems are called Long COVID and can last for weeks, months, or years. Because Long COVID has been associated with a wide range of symptoms, it has been difficult to differentiate between people with Long COVID and people with an unrelated disease.

In a large study supported by the Researching COVID to Enhance Recovery (RECOVER) Initiative, researchers have uncovered insights that lay the foundation for defining Long COVID and classifying it as a condition uniquely linked to SARS-CoV-2 infection.

What did the researchers do?

Researchers looked at surveys completed by nearly 10,000 people across the United States (including Puerto Rico and Washington, D.C.) to understand the symptoms that participants reported experiencing 6 months or more after a COVID-19 infection. Next, the researchers assigned points to each symptom, creating a symptom-based scoring system that helped identify people who had Long COVID.

What did they learn?

Study participants frequently reported more than 30 symptoms across multiple organ systems and parts of the body. After more analysis, the researchers identified 12 symptoms that were most common in participants with Long COVID:

• Fatigue

• Dizziness

• Gastrointestinal symptoms

• Heart palpitations

• Issues with sexual desire or capacity

• Changes to or loss of smell or taste

• Increased thirst

• Chronic cough

• Chest pain

• Abnormal movements

• Difficulty thinking or concentrating (brain fog)

• Worsening of symptoms after mild physical or mental activity (post-exertional malaise)

The researchers also found that certain symptoms occurred together in “clusters” and had a range of impacts on the participants’ health.

Why is this research important?

The results of this study will help researchers build a meaningful symptom-based definition for identifying Long COVID. The findings may serve as a starting point for early diagnosis and patient monitoring as well as a tool for future studies. Having a clear definition of Long COVID will help patients, caregivers, clinicians, and scientists better predict, treat, and possibly prevent the condition in the future.

Where can I go to learn more?

Large study provides scientists with deeper insight into long COVID symptoms

• Researchers supported by the RECOVER Initiative identified the most commonly reported symptoms of Long COVID.

Long COVID

• NIH shares additional resources and information about Long COVID in children and adults.

Guidance on Long COVID as a Disability Under the ADA

• The U.S. Department of Health and Human Services provides information on resources for people with symptoms of Long COVID that cause physical or mental impairment.

Sources

Thaweethai, T., Jolley, S. E., Karlson, E. W., Levitan, E. B., Levy, B., McComsey, G. A., McCorkell, L., Nadkarni, G. N., Parthasarathy, S., Singh, U., Walker, T. A., Selvaggi, C. A., Shinnick, D. J., Schulte, C. C. M., Atchley-Challenner, R., Horwitz, L. I., Foulkes, A. S., & RECOVER Consortium. (2023). Development of a definition of postacute sequelae of SARS-CoV-2 infection. JAMA, 329(22), 1934–1946. https://doi.org/10.1001/jama.2023.8823