As the nation continues to grapple with COVID-19, many Americans who’ve had the virus report persistent and often debilitating symptoms—long after their initial infection has passed. Referred to as "long COVID,” this condition is a growing concern for health care professionals and researchers, not to mention the people whose lives continue to be impacted.

According to recent data, long COVID affects roughly 6% of U.S. adults,¹ while 15% reported having had long COVID symptoms at some point.² More than a quarter of adults with long COVID (26.4%) reported significant limitations to their daily activity.¹

The topic of long COVID was explored during "The Impact of the COVID-19 Pandemic on Older Adults' Mental Health,” one of the breakout sessions at our 2023 Older Adults Mental Health Awareness Day (OAMHAD) Symposium. Learn more about what long COVID is, how it uniquely impacts older adults, and why it’s critical to raise awareness of this phenomenon that’s affecting the health and well-being of so many Americans.

What is long COVID?

Long COVID is defined by the World Health Organization (WHO) as “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.”

Other names for long COVID include:

• Long-haul COVID
• Post-COVID conditions
• Post-acute COVID-19
• Chronic COVID
• Post-acute sequelae of SARS CoV-2 infection (PASC)

The symptoms associated with long COVID can last for several weeks, months, or even years in some cases. Symptoms may be so severe that long COVID can now be considered a disability under the Americans With Disabilities Act (ADA).

What are the symptoms of long COVID?

There is a wide constellation of reported symptoms of long COVID—up to 200, in fact. Some may mimic the symptoms of an acute COVID infection, while others are more similar to myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

"Long COVID is a complex disorder,” said OAMHAD presenter JD Davids, founder of the Network for Long COVID Justice and Strategies for High Impact (S4HI), which sponsors the Long COVID Justice project. “It can have many different facets that include different diseases or conditions."

Symptoms of long COVID include:

• Severe fatigue
• Fever and chills
• Insomnia
• Brain fog
• Headaches and dizziness
• Cognitive problems
• Loss of or distorted sense of taste or smell
• Loss of appetite
• Nasal congestion
• Changes in vision
• Swelling in feet and legs
• Neck pain
• Hair loss
• Rashes
• Muscle aches
• Joint pain

For many people with long COVID, physical activity leads to a notable worsening of symptoms; this is called post-exertional malaise. Long COVID may also cause other health conditions to develop, such as diabetes and heart failure.

Who is more likely to get long COVID?

While anyone can experience lingering COVID symptoms, there are certain people who are at higher risk for developing long COVID. These include:

• People who experienced a severe COVID-19 infection, especially those who were hospitalized
• Those who aren't up to date on their COVID vaccines
• People with underlying health conditions (e.g., diabetes, HIV, obesity)
• People who are immunosuppressed
• Older adults

Older adults are more vulnerable to having long COVID due to a few reasons. For one thing, our immunity weakens as we age, making it more difficult to fight off infection. Older people are also more likely to have chronic health conditions that can lead to complications from the virus. In addition, older adults tend to have higher levels of systemic inflammation, which can increase the risk of severe COVID disease.

Health inequities also play a role in developing long COVID. Certain racial and ethnic groups, people with disabilities, LGBTQI+ communities, and those living in rural areas are just some of the populations with risk factors that make them more vulnerable to long COVID. These risk factors include lack of access to health care services, certain working conditions (e.g., working with the public), and higher rates of underlying chronic illnesses.

“When we look at people of color, Black, brown, and Indigenous people have much higher rates of COVID loss as well as higher rates of long COVID, and this may be attributable to 72% of those working outside the home,” Davids explained.

What is the treatment for long COVID?

Since this condition involves a vast range of symptoms, there is no specific long COVID test or treatment. Diagnosis is usually made through a physical exam, reported symptoms, and medical history (including any previous COVID-19 infections). If you’ve been diagnosed with long COVID, you should work with your health care provider(s) to create a plan to manage your individual symptoms. This can help improve your quality of life.

In the OAMHAD session, Davids talked about the importance of advocating for your own care.

"What's key is that if you feel like something is wrong, trust yourself,” he said. “Especially as older adults, we’re told, 'Well, that's just aging, we can't do anything.' But we have the right to care."

Davids also stressed the value of building a supportive community. In addition to being able to exchange helpful resources and tips, finding others on the same journey as you can help improve your social connectedness and emotional well-being.

How can I prevent long COVID?

When it comes to avoiding long COVID, the best strategy is to prevent getting infected with COVID-19. Beyond basic hygiene practices like washing your hands often, you can help protect yourself and the people around you by:

• Staying up to date on your COVID vaccines
• Avoiding close contact with people who have a confirmed COVID infection
• Wearing a well-fitting mask out in public or in crowded spaces (e.g., a KN95 mask)
• Seeking treatment if you have COVID and are at high risk for severe illness
• Isolating if you have a suspected or confirmed COVID infection

Can long COVID cause anxiety and depression?

The mental and emotional toll of long COVID cannot be understated. In 2023, the U.S. Department of Health and Human Services (HHS) issued an advisory about the mental health impact for both people who have long COVID and those who care for them. “Long COVID has a range of burdensome physical symptoms, and can take a toll on a person’s mental health. It can be very challenging for a person, whether they are impacted themselves, or they are a caregiver for someone who is affected,” said HHS Secretary Xavier Becerra in the statement.

Long COVID itself can cause neurological symptoms that affect mental health. Secondary factors—such as prolonged social isolation, extreme fatigue, physical limitations, and sleep disturbances—can also wreak havoc on a person’s well-being.

"If we can no longer safely attend social and public events, there is a myriad of research showing that older adults are harmed by isolation and loneliness,” said Davids. “This is even more likely amongst our LGBTQ elders and others who may have not had the family support that becomes so important as we age."

Which mental health conditions are linked with long COVID? They include:

• Depression
• Anxiety
• Post-traumatic stress disorder (PTSD)
• Psychosis
• Obsessive compulsive disorder (OCD)

Long COVID depression rates may be even higher for those facing socioeconomic barriers that cause additional stress—such as limited access to quality health care services and low income.

While there's no definitive treatment for mental health problems stemming from long COVID, some people may benefit from traditional interventions like talk therapy, medication, and stress management practices. Having a solid support network of trusted health care providers, family, and friends can help reduce stress and ease social isolation.

Below is a list of resources Davids recommended that can be helpful to long COVID survivors, families, caregivers, and professionals.

You’re not alone: Long COVID support resources

• The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next by Fiona Lowenstein: This book is available from Amazon, Barnes & Noble, and other book retailers.
• Long COVID Justice: This online resource features articles, webinars, and support group information for long COVID survivors and their families. It also explains how you can get involved in advocacy efforts.
• COVID-19 Longhauler Advocacy Project (C19LAP): This website outlines the basics of long COVID and includes a list of long COVID support groups on Facebook.
• Long COVID Physio Video Series: This is a set of educational videos about long COVID, available in multiple languages.
• Centers for Disease Control and Prevention (CDC) Long COVID Resource Center: These pages include information on long COVID risk factors, symptoms, research, and more.

While the COVID-19 public health emergency has ended, COVID should still be considered a national priority. Our long-term health—and that of the people we care about—depends on it.

Brush up on the latest news and knowledge at NCOA’s COVID-19 for Older Adults resource library.

Sources

1. Nicole D. Ford, PhD et. al. Long COVID and Significant Activity Limitation Among Adults, by Age — United States, June 1–13, 2022, to June 7–19, 2023. Morbidity and Mortality Weekly Report (MMWR). August 11, 2023. Found on the internet at https://www.cdc.gov/mmwr/volumes/72/wr/mm7232a3.htm

2. KFF. Long COVID: What Do the Latest Data Show? Jan. 26, 2023. Found on the internet at https://www.kff.org/policy-watch/long-covid-what-do-latest-data-show/

This project was supported, in part by grant number 90CSSG0048 and 90FPSG0051 from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.