By: Jacquelin Sauer
While most individuals infected with SARS-CoV-2, the virus that causes COVID-19, fully recover within a few days or weeks, others experience long-term symptoms and effects that can last for months or years after their initial diagnosis. This condition, commonly referred to as long COVID, can have drastic, episodic, and unpredictable effects on multiple organ systems, including the reproductive, respiratory, nervous, and gastrointestinal systems.1,2 There are many unknowns about long COVID, as research regarding diagnoses, symptoms, and treatment are relatively new. However, available research suggests that (1) long COVID may affect COVID-19 survivors, regardless of initial disease severity or age; (2) long COVID can have various clinical symptoms; and (3) individuals with long COVID can be associated with a worse clinical outcome and lower quality of life than those without.3,4
Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection that last four or more weeks.5 It is estimated that 10% of COVID-19 survivors develop long COVID.1,4 On a global scale, at least 65 million individuals are estimated to have long COVID, with cases increasing daily.1 Due to the probability of undocumented cases, these numbers are expected to be much higher.1 According to the United States Census Bureau, approximately 28% of the 127 million Americans who have had COVID-19 developed long COVID.6,7 There is inconsistent data on the risk factors for long COVID.4
Symptoms of long COVID can vary for each individual; however, the most common symptoms are fatigue, impaired memory, changes in taste and smell, sleep problems, brain fog, anxiety, heart palpitations and labored breathing.1,3,4,8 A longer, more in-depth list of long COVID symptoms can be found on the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) websites. Long COVID is associated with multiple adverse outcomes and new-onset conditions, including cardiovascular, thrombotic and cerebrovascular disease, type 2 diabetes, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and postural orthostatic tachycardia syndrome (POTS).1 While there are diagnostic tools, treatments, and management strategies for some components of long COVID, effective and validated diagnostic tools and treatments for long COVID are still in development.1
Long COVID can be a disability under the ADA, Section 504, and Section 1557 if it substantially limits one or more major life activities.9 Major life activities include, but are not limited to, caring for oneself, seeing, hearing, eating, sleeping, walking, standing, speaking, breathing, learning, reading, concentrating, thinking, writing, communicating, operating a major bodily function, and working.9 For individuals whose long COVID qualifies as a disability, they are entitled to protection from discrimination under the ADA. These protections ensure that reasonable modifications (i.e., flexible work schedules) are made to support and accommodate a person’s long COVID-related limitations, increasing their quality of life.9 Individuals whose long COVID does not qualify as a disability are not protected from discrimination under the ADA. A list of federal resources for individuals with long COVID can be found here: https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html.
Even though there is a lot we don’t know about long COVID, one thing is certain: it’s not just one illness. It is a multisystemic condition, affecting many parts of the body and making everyday life much harder for those impacted. As COVID-19 cases continue to rise globally, the number of cases of long COVID will also increase. To improve the quality of life for the millions of people who are dealing with long COVID now and in the future, we, as a community, need to focus on:
- Extending research efforts into definitions, diagnoses, and treatment of long COVID.
- Educating and preparing the next generation of health-care providers and researchers to better support impacted individuals.
- Creating public communications campaigns that will inform the public about the risks and outcomes of long COVID.1
- Developing policies and providing funding to sustain long COVID research efforts, disability support, and adequate, affordable, and equitable healthcare.
- Rethinking disability and the way we offer support to individuals with ‘invisible conditions.’10
Long COVID poses a global health challenge for our community. The NIH recognizes this challenge, and is actively working to increase our knowledge and understanding of long COVID. The RECOVER initiative was launched by the NIH in early 2021 to address the widespread and diverse impacts of long COVID.2 Users can navigate to the RECOVER website (https://recovercovid.org/) to find updated information on long COVID research, resources statistics, and ongoing studies.