Honoring the many lived experiences with Long COVID
The RECOVER Initiative recognizes International Long COVID Awareness Day on March 15—a day established by the Long COVID community to increase visibility of the condition, share resources, and educate the public.
“I think people are often confused by the fact that there are more than 200 documented Long COVID symptoms. The diversity of symptoms follows the diversity of underlying conditions [that] COVID affects and shows the incredible strain Long COVID can put on the body—turning minor ailments that patients like me didn’t even notice into life-altering conditions.”
— Leto Sapunar, RECOVER Patient Representative
Each person living with Long COVID has a unique experience with the condition. Some people may have Long COVID symptoms that last many months, whereas others experience symptoms that come and go. Over 200 Long COVID symptoms have been recognized, and people living with the condition can also experience different numbers and combinations of symptoms and associated medical conditions.
To better understand people’s varied experiences, a new RECOVER study describes different Long COVID symptom patterns (trajectories) seen in adults. The 8 distinct trajectories that researchers identified show some of the ways that Long COVID can present and progress in a person’s life.
Continued research can help improve Long COVID prevention, diagnosis, and treatment—and RECOVER researchers continue to search for answers about what causes the differences in how Long COVID presents. This International Long COVID Awareness Day, which is officially recognized on March 15, RECOVER honors Long COVID community members and their participation in the initiative’s studies to help answer important research questions.
Community contributions advance RECOVER research
“Long COVID continues to be a challenging medical condition for patients and physicians alike. It requires good communication, advocacy, and resilience to deal with its ever-changing symptoms as we work to find solutions for living alongside Long COVID.”
— Cynthia Garbutt, RECOVER Patient Representative
Members of the Long COVID community have contributed their time, perspectives, and health information to RECOVER to help understand how and why Long COVID looks different for everyone.
- Nearly 30,000 adults, children, and pregnant women have participated in RECOVER observational studies.
- RECOVER study participants have shared with researchers more than 82 million datapoints and 1.4 million biosamples to advance observational and pathobiology studies.
- More than 3,000 people participated in the first phase of the RECOVER Clinical Trials (RECOVER-CT) program to test possible treatments for Long COVID.
- 110 RECOVER Patient, Caregiver, and Community Representatives are sharing their experiences and providing input to inform the direction of RECOVER studies.
- Individuals submitted nearly 600 possible treatments for consideration as RECOVER-Treating Long COVID (RECOVER-TLC) plans new clinical trials. Of these submissions, 72% came from people living with Long COVID.
- Over 60 volunteers have joined RECOVER-TLC working groups to help review and prioritize possible treatments to test.
Participants enable learning about Long COVID across the lifespan
“When my oldest daughter—then 16 years old—and I contracted COVID-19 in March 2020, we felt at sea as we searched for information about the virus and tried to understand why we didn't recover within a few weeks. When my youngest became severely debilitated by Long COVID a few years later, also at age 16, her illness looked very different than her sister’s or mine. I felt like I was once again wading into the unknown despite my years of experience navigating Long COVID.
Both of my daughters participate in the RECOVER Initiative so other families might learn from our experiences. Longitudinal studies like this are vital for helping us better understand the complexities of Long COVID and for helping develop effective treatments.”
— Ann Wallace, PhD, RECOVER Patient and Caregiver Representative
RECOVER research has shown that important differences in symptoms and medical conditions can depend on factors like a person’s age. The initiative includes people of all ages and life stages in its studies, enabling new discoveries about Long COVID across the lifespan. Study participants who have supported these efforts include:
- Babies, toddlers, and preschool-aged children.
- School-aged children and adolescents.
- Pregnant women.
- Older adults.
People from many walks of life help to understand Long COVID risk factors
“I’m a young adult and college student, and I feel that people my age are the shifters of the future. Being able to share how Long COVID is affecting my generation’s physical and mental health helps move RECOVER’s research forward.”
— Kian Nguyen, RECOVER Patient Representative
Long COVID can affect anyone and RECOVER researchers have worked to identify who may be at higher risk for developing the condition. Understanding these risk factors could support Long COVID prevention and diagnosis. RECOVER study participants have shared survey responses, biosamples, and health data to support discoveries about who may be at higher risk for the condition.
- Different factors, such as a person’s sex or the social risk factors they experience, can impact whether they develop Long COVID.
- People with other physical health conditions, such as chronic kidney disease or cancer, or with mental health conditions like depression or schizophrenia, may be more likely to develop Long COVID.
- Having COVID-19 more than once can be associated with a higher risk of developing Long COVID, as seen in this paper describing a study of children and adolescents.
- People of certain racial or ethnic backgrounds, like Black or Hispanic adults, may be more likely to develop Long COVID. Similarly, children who are part of these groups may be more likely than White children to experience certain symptoms of Long COVID.
Research to understand Long COVID continues
“A lot of this research takes time, because anything as data driven as RECOVER takes time. But I hope keeping people aware of the findings being published helps them understand that the work is continuing—that the research is evolving and we’re constantly learning.”
— Brittany D. Taylor, MPH, RECOVER Community Representative
Long COVID awareness—including awareness of the many forms the condition can take—is key to moving research into the condition forward. RECOVER researchers continue to search for answers about what causes differences in Long COVID and what treatments may be helpful for those living with the condition.
- RECOVER observational cohort studies are examining how Long COVID affects different parts of the body, including the heart, brain, and lungs.
- RECOVER electronic health record studies continue to examine the relationships between Long COVID and other medical conditions, as well as possible medications that could help prevent Long COVID.
- More than 60 pathobiology studies funded by RECOVER continue their work to understand what happens inside the bodies of people with Long COVID.
- RECOVER-CT will share more findings this year about possible treatments for Long COVID.
- RECOVER-TLC is launching the next phase of clinical trials to study additional possible treatments for specific Long COVID symptoms.
This International Long COVID Awareness Day, you can make a difference by sharing what you know about the condition. Share RECOVER findings with your community and help more people understand lived experiences with Long COVID.
