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Frequently Asked Questions

Find answers to common questions about how RECOVER is conducting research to understand, diagnose, prevent, and treat Long COVID.

About Long COVID

PASC stands for post-acute sequelae of SARS-CoV-2 (PASC). Scientists often use this term to describe what can happen to a person’s health after the SARS-CoV-2 virus—the virus that causes COVID-19—infects them.

The term ”post-acute” means that the symptoms of PASC happen after the initial (acute) part of the illness, which is when a person is first sick with COVID. The word “sequelae” means “consequences” and refers here to the different long-term effects COVID-19 can have on the body.

People experiencing these long-term health effects created the term Long COVID to describe their own experiences. Many scientists and medical professionals have also adopted this term.

Long COVID can affect different parts of the body, like the lungs, heart, and brain. People experiencing Long COVID have reported over 200 distinct symptoms. 

These symptoms can last for months or they can come and go. They can also begin at different times. Scientists have found that people develop Long COVID symptoms in one of 3 ways:

  1. COVID symptoms continue for months or years after a person first gets sick. 
  2. New symptoms develop later, even after a person thought they had gotten better.
  3. Although a person had no symptoms when they first had COVID, they begin feeling sick weeks later.

For more information about Long COVID, its symptoms, and how it develops, visit the What is Long COVID? page.

Long COVID can affect anyone, including children and young adults between the ages of 0 (babies) and 25. Even if a baby, child, or young adult experiened a mild or symptom-free SARS-CoV-2 infection, they can develop Long COVID. 

Common symptoms of Long COVID in children and adolescents (pre-teens and teens as old as 17) include:

  • Feeling very tired and/or having trouble sleeping
  • Pain, including headaches, stomach pain, or aching muscles
  • Cough
  • Mood changes, including feeling sad, worried, angry, or easily upset 
  • Loss of smell or change in taste and/or loss of appetite 

However, younger children can experience symptoms that are different from those of older children and adolescents. 

Learn more about how to get care for a child or adolescent with Long COVID symptoms in our fact sheet, "Getting Ready to Talk about Long COVID with Your Child's Doctor" (PDF, 1 pages).

Millions of people live with Long COVID. The Long COVID symptoms they experience can differ widely and last for different amounts of time.

In collaboration with people affected by Long COVID, RECOVER scientists study these symptoms, their causes, and possible treatments. Visit the Impact page to explore what RECOVER is learning about Long COVID. You can also sign up for email alerts to receive news on the latest RECOVER research findings.

In addition to taking part in RECOVER studies, people affected by Long COVID are sharing information about their symptoms via CURE ID. An online platform created by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH), CURE ID lets patients, caregivers, and healthcare professionals share and explore Long COVID treatment options. Visitors to the platform can browse case reports on symptoms, the treatments people have tried, and the outcomes of those treatments. Anyone who creates a CURE ID account can comment on others’ case reports or contribute their own. 

Studies

RECOVER works with patients, caregivers, healthcare providers, scientists, federal agencies, and other organizations to:

  • Help people affected by Long COVID find and join research studies.
  • Give people affected by Long COVID a voice in research by connecting them with experts and providing opportunities to contribute as Representatives.
  • Gather information on the ongoing health effects of COVID-19, including Long COVID, from clinical exams, health records, medical reports, patient surveys, records on the cause of death, medical imaging (scans), and samples of human body tissue (biospecimens).
  • Use study plans (or research protocols) to ensure that all RECOVER studies of the same type follow the same guidelines and collect data that can be compared.
  • Share research findings and build connections to better understand, diagnose, prevent, and treat Long COVID.

Anyone can find information about RECOVER’s research findings on the following webpages:

Select a study or clinical trial below to review the full study plan, plain-language summaries of the plans, and other documents related to study enrollment and participation.

As we learn more about Long COVID, these study plans may change. The links above will always have the most current information.

As part of the observational study plans, participants visit the study researchers at planned intervals over a period of months or years. RECOVER observational study participants may take tests, have measurements taken, or be asked health or medical questions at each visit. 

RECOVER observational study researchers use consistent and compatible questionnaires and question libraries, or sets of questions, to make sure every question is asked the same way at every study site. This makes it possible to compare research findings from all the studies.

The Adult Survey Question Library (XLSX, 61 KB) lists where each question in the RECOVER adult observation study came from. The list does not include clinical measurements or laboratory tests that may also be used in other studies. Learn more about the observational study plans. 

RECOVER clinical trials will explore 13 study interventions using 5 platform protocols. The protocol for each platform describes the goals of the research, who can enroll, possible treatments, study activities, and more. View the clinical trial protocols to learn more.

RECOVER studies are designed to better our understanding of other health conditions that develop following an infection. These post-infection conditions, also known as Infection-Associated Chronic Conditions (IACCs), include:

  • Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A serious illness that causes extreme fatigue (tiredness), problems sleeping, and trouble thinking or paying attention.
  • Dysautonomia: A disorder that affects automatic body functions, such as breathing, heart rate, and digestion.
  • POTS (postural orthostatic tachycardia syndrome): A form of dysautonomia that causes a person to experience fast heart rate, dizziness, and fatigue when standing up.

More than 60 post-infection illness experts contribute to RECOVER research. Learn more about them and the conditions they study by viewing the Post-Infection Illness Expert List (PDF, 12 pages).

Note: This list currently includes only individuals who have shared their specific area(s) of expertise with RECOVER. We will update this list as more experts participate in RECOVER’s observational cohort, electronic health record (EHR), tissue pathology (autopsy), pathobiology, and clinical trial studies.

Learn more about RECOVER research on the relationships linking Long COVID, post-infection illnesses, and other (either pre-existing or new onset) health conditions by visiting the Publications page, with the new-onset and pre-existing Conditions findings filter selected.

To stay informed about RECOVER’s progress, impact, and latest research findings, sign up for email updates. You can sign up to receive:

Funding

RECOVER is funded by Congress and the National Institutes of Health (NIH). These funds have been distributed in various phases since 2020.

2020

In December 2020, Congress appropriated $1.15 billion to NIH to study the long-term effects of COVID-19, including Long COVID. The NIH established the RECOVER Initiative in February 2021, and it has allocated funds provided through the American Rescue Plan Act of 2021 (Sec. 2401) to support this effort.

The NIH initially awarded RECOVER funding to more than 30 groups, including researchers from hospitals, health centers, and other places. These researchers, along with people affected by Long COVID and representatives from advocacy organizations, worked together to develop the main protocols that serve as the study plans for RECOVER studies. To help administer the RECOVER Initiative, RTI International was selected to serve as the initiative’s Administrative Coordinating Center (ACC).

2021

In mid-2021, the NIH funded awards for two core research arms: the RECOVER Clinical Science Core (CSC), to New York University (NYU) Langone Health; and the Data Resource Core (DRC), to Massachusetts General Hospital. Both awardees were charged with developing and supporting a network of sites across the country to study Long COVID. 

For the Clinical Recovery Cohort Studies, led by the CSC, more than 200 researchers from more than 25 institutions—and at hundreds of sites—became actively engaged in community outreach and engagement. The research teams recruited a diverse representation of adults, pregnant people, children, and adolescents to take part in observational cohort studies. 

The DRC was tasked with managing RECOVER data and biological samples (biospecimens) to enable tracking and searchability across all data sources. The DRC also began providing expertise in statistical analyses and data standardization, access, and sharing.

2022

In August 2022, the Duke Clinical Research Institute (DCRI) was named as the RECOVER Clinical Trials Data Coordinating Center (CT-DCC). Continuing to date, the CT-DCC develops and implements large-scale national research studies aimed at understanding and improving the treatment of the most burdensome symptoms of Long COVID. 

As the data coordinating center, DCRI partners with RTI International as the RECOVER-CT Administrative Coordinating Center (CT-ACC) to design clinical trials to explore possible treatments for Long COVID. The CT-DCC supports protocols designed to simultaneously test multiple possible treatments for Long COVID, including drugs, behavioral and cognitive interventions, devices, and other therapies. RECOVER clinical trials began enrolling patients in August 2023.

2024

In February, 2024, the NIH invested an additional $515 million to support the RECOVER Initiative. In December 2024, the Public Health and Social Services Emergency Fund (PHSSEF) enabled the NIH to reallocate $147 million to support the RECOVER Initiative.

The initial $1.15 billion appropriated to NIH in December 2020 funded the following RECOVER activities: 

  • Clinical research studies
  • Clinical trials
  • Data management, analytics, and biospecimen repository
  • Research management services
  • Administrative coordination, review, and communication

As indicated in the timeline above, in February 2024, the NIH invested an additional $515 million and in December 2024, NIH received approval from the PHSSEF to reallocate $147 million to support RECOVER’s ongoing efforts to understand, diagnose, prevent, and treat Long COVID. These additional funds are being allocated over fiscal years 2025–2029 to support:

  • RECOVER-Treating Long COVID (RECOVER-TLC).
  • Completion of RECOVER observational studies (adults and children).
  • Additional pathobiology studies.
  • Preservation and broader access to RECOVER data and biospecimens.
  • Maintenance of RECOVER-supported research infrastructure.

Enrollment

People who have Long COVID symptoms, as well as people who don’t—including those who never had COVID-19—participate in RECOVER studies. RECOVER includes these participants so researchers can compare health experiences between those with and without Long COVID. This helps them figure out which symptoms are unique to Long COVID, what factors might increase the risk of developing it, and how best to treat it.

RECOVER has finished enrolling children and adults (including pregnant women) in observational cohort studies. 

The RECOVER Clinical Trials (RECOVER-CT) program has also finished enrolling people in it's studies investigating the safety and effectiveness of treatments for Long COVID symptoms: RECOVER-AUTONOMIC, RECOVER-NEURO, RECOVER-VITAL, RECOVER-ENERGIZE, and RECOVER-SLEEP.

To stay up to date on the enrollment status of RECOVER studies, including future clinical trials, sign up for the RECOVER Report, RECOVER’s monthly email newsletter.

RECOVER research—including observational studies and clinical trials—is ongoing at more than 200 locations (study sites) across the United States, Puerto Rico, and Canada.

View a map of the locations of the observational studies. Use the search feature to narrow the options by study or by state or territory.

Visit trials.recoverCOVID.org to find the ClinicalTrials.gov study records. These records list the activated sites for each trial.

RECOVER shares study information from all of its sites with all RECOVER researchers. This collaboration and the resulting information sharing across RECOVER help researchers answer key questions more quickly. Because Long COVID can affect everyone differently, sharing information also helps researchers find answers that work for as many people (and groups) as possible.

Community Engagement

People affected by Long COVID have helped RECOVER design studies, raise awareness about Long COVID, and build connections with people affected by related health conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Read the Patient and Community Engagement Strategy (PDF, 7 pages) to learn how RECOVER has involved patients, caregivers, and community Representatives as partners in the research process. This document also discusses how RECOVER works with people from different backgrounds, walks of life, and communities. 

The NCEG is the leading body of RECOVER’s patient, caregiver, and community Representatives. The NCEG offers a forum for meaningful dialogue and informed decision making regarding the Initiative’s research on the long-term effects of COVID. There are 20-25 Representatives who serve on the NCEG. More than 100 Representatives contribute to RECOVER.

Representatives also serve as members of the Observational Consortium Steering Committee (OCSC) and the RECOVER-Clinical Trials (RECOVER-CT) Steering Committee. Other patient, caregiver, and community Representatives engage at study sites located near them and contribute to the development of study materials and communications.

View the Representatives page to learn more about Representatives, the valuable contributions they make to RECOVER, and the NCEG.

Interested parties can ask to engage with Representatives. They can also ask to have agenda items added to NCEG meetings. To submit either request, email RECOVER_ACC@rti.org. Please include the following information in your email.

  • Subject line:
    • Set your email’s subject line to “NCEG and Representative Request.”
  • Topic of the request: 
    • Specify the topic of the request, including but not limited to:
      • Upcoming event, activity, or action.
      • Inquiry about published research findings.
      • Potential funding awards.
    • Please include available web links if possible.
  • Nature of the request: 
    • Specify the reason briefly, such as:
      • Present to or inform Representatives on topics related to COVID, Long COVID, medical research, etc.
      • Collect Representative input on specific RECOVER-related matters.
      • Recommend Representative participation in activities or in groups. 
  • Population: Specify if your request relates to a specific RECOVER study population (cohort), such as adults, children, or teens.
  • Payment details: RECOVER Representatives are compensated for many of their RECOVER-related activities. Please specify whether your request will include compensation to the Representatives for their contributions and engagement. Note: RECOVER is not responsible for payments associated with activities that have not been pre-approved as part of the RECOVER Initiative.
  • Supporting materials or documents.
  • Name of the point of contact and their contact details. 

The RECOVER ACC Community Engagement Team will review and respond to your emailed request.

You can get involved with RECOVER even if you’re not enrolled in a study or serving as a Representative.

Check this site regularly for new opportunities to learn about, support, and contribute to RECOVER’s Long COVID research.

Support Resources

Research shows that vaccination is a highly effective way to protect yourself, your friends, family, and neighbors against the long-term effects of COVID-19, including Long COVID.

To find a COVID-19 vaccination site:

Because there are many different symptoms of Long COVID, you may need help from different types of doctors. The types of doctors and specialists who might be able to treat your symptoms include the following:

  • Pulmonologists (lung doctors)
  • Cardiologists (heart doctors)
  • Neurologists (brain and nervous system doctors)
  • Physical and occupational therapists
  • Speech and language specialists

Some clinics now have teams of specialists who work together to treat patients with Long COVID. The Long COVID Alliance maintains a list of these Long COVID clinics organized by state. The Alliance is a group of patients, advocates, and scientists who work together to make sure patients and their caregivers benefit from the latest discoveries about the long-term effects of COVID-19. 

Long COVID can affect people physically, mentally, and emotionally. Long COVID is considered a disability under the Americans with Disabilities Act (ADA) if it significantly limits one or more major “life activities” or “bodily functions.”

Examples of life activities include essential day-to-day activities like sleeping, eating, walking, paying attention, and working.
Some examples of bodily functions include the following:

  • The cardiovascular system, which includes the heart and blood vessels.
  • The gastrointestinal system, which includes the stomach and intestines.
  • The nervous system, which includes the spinal cord and brain.
  • The immune system, which fights infections.

Even if the limitations caused by Long COVID co and go, those limitations may still be considered disabilities if they would seriously limit a major life activity when active. Examples of limitations include the following: 

  • Lung damage that causes shortness of breath or fatigue
  • Pain in the intestines or nausea
  • Memory troubles and  brain fog (difficulty concentrating or thinking clearly)

A health care provider must decide if a person’s Long COVID condition or symptoms qualify as a disability under the ADA.

Learn about disability coverage for Long COVID by reviewing “Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557,” published by the U.S. Department of Health and Human Services (HHS).

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