Long COVID: What It Is & What You Need to Know

En español

Welcome back to DRT’s blog series related to the end of the COVID-19 Public Health Emergency (PHE). This is our third blog post in a series acknowledging that the end of the PHE does not equate to the end of the pandemic’s lingering effects, which include Long COVID. Today, we are defining Long COVID, which can be a bit of a challenge given the range of symptoms experienced by those who have it and the varying timelines in which those symptoms may arise, but generally this refers to persistent health effects experienced by some individuals after COVID-19 infection. To understand how Long COVID may qualify as a disability (the next blog topic in this series), we must first grapple with what it looks like.

The Origin of “Long COVID” and Studies Related Thereto

While many people with COVID-19 get better within weeks, some people continue to experience symptoms that can last months after first being infected or may have new or recurring symptoms develop at a later time. Long COVID is a term that originated with anecdotal reports, dating back to April 2020, from previously healthy individuals who were experiencing lingering symptoms after being infected with COVID-19. These individuals formed support groups, started to refer to themselves as “Long Haulers,” and named their conditions Long COVID. After surveying their membership, Long Haulers published a landmark survey in May 2020 identifying the range of symptoms they experienced. Studies detailing organ dysfunction in people with Long COVID were published in late 2021 (click here for the 2021 study) and early 2022 (click here for the 2022 study). These early efforts by the patient community have led to breakthroughs in understanding the condition.    

Long COVID is Broadly Defined

Click here for the National Research Action Plan on Long COVID, which notes that Long COVID is “a multifaceted disease that can affect nearly every organ system.” About 200 symptoms of Long COVID have been reported. It can manifest as new onset chronic disease (such as heart disease, diabetes, and kidney disease), blood conditions, and mental and neurological conditions. Accordingly, the National COVID Research Acton Plan broadly defines Long COVID as “signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions:

• are present four weeks or more after the initial phase of infection;
• may be multisystemic;
• and may present with a relapsing–remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection.”

The U.S. Department of Health and Human Services Office for Civil Rights and the U.S. Department of Justice Human Services Civil Rights Division published guidance on Long COVID as a disability, which you can find by clicking here, and included some examples of common symptoms, while noting this is not an exhaustive list:

• Tiredness or fatigue
• Difficulty thinking or concentrating (sometimes called “brain fog”)
• Shortness of breath or difficulty breathing
• Headache
• Dizziness on standing
• Fast-beating or pounding heart (known as heart palpitations)
• Chest pain
• Cough
• Joint or muscle pain
• Depression or anxiety
• Fever
• Loss of taste or smell

Because Long COVID is broadly defined, more specific definitions have been developed to facilitate communication and research related thereto. These include “Post-COVID-19 conditions” (PCC) and “Post-acute Sequelae of SARS-CoV-2 infection” (PASC). PCC is interchangeable with Long COVID, in that it includes both direct and indirect effects of the virus. On the other hand, PSAC includes only the direct effects of the virus. When we use the term “Long COVID,” it is meant to include both PCC and PASC.

Risk of Developing Long COVID

Long COVID can happen to anyone who has had COVID-19, regardless of the severity of the initial infection. Estimates of the risk of Long COVID vary, but click here for a recent study from the Centers for Disease Control and Prevention (CDC), which suggests that one in five adult COVID-19 survivors aged 18 to 65 years and one in four survivors aged 65 years and over have a health condition related to COVID-19 infection. Click here for another CDC study estimating that millions of U.S. adults have new long-term symptoms that limit their daily activities after having COVID-19 and that women may be disproportionally impacted.

While additional research into racial disparities in Long COVID is needed, the National Research Action Plan on Long COVID notes that some racial and ethnic minority communities are disproportionately impacted by COVID-19 and that “the higher burden of co-morbid chronic disease conditions seen in these communities can put people at a higher risk for severe illness and complications related to COVID-19, including Long COVID.” Furthermore, it emphasizes that Long COVID outcomes are likely influenced by social determinants of health, e.g., housing and income, which could further contribute to the disproportionate toll that Long COVID likely takes on certain communities. Other factors that may impact the burden of Long COVID include age, gender, race and ethnicity, rurality, insurance coverage, economic disadvantage, pregnancy status, and disability status.

Societal and Economic Implications of Long COVID

The negative impact on health status related to Long COVID is only one consequence of the pandemic that persists despite the end of the PHE. Longer-term disease and disability will have ongoing economic and societal impacts related to a decreased ability to work (in one survey highlighted by the National Research Action Plan on Long Covid, 44% percent of patients with Long COVID reported not being able to work at all, and 51% had reduced their working hours) and increased health care costs for the treatment of Long COVID, as well as new chronic conditions that may be attributable to COVID-19.

Next time, we will explain how Long COVID may qualify as a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act.