Find answers to questions about RECOVER
Have questions about the RECOVER Initiative?
FAQs share important information about the RECOVER Initiative and can help you understand what we currently know about the long-term effects of COVID.
As RECOVER learns more about Long COVID, we'll update these FAQs and add new ones. Please check this FAQs page regularly for the latest information.
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The study plan
What support can RECOVER offer people with PASC, including Long COVID?
Research findings are available in the RECOVER Results section. When new RECOVER studies are published, we will share them on this website and through other NIH channels.
We're also working with providers, patients, caregivers, researchers, other federal agencies, and organizations to:
- connect survivors of PASC and Long COVID with research sites where they can join a study;
- connect people who have PASC and/or Long COVID with experts to share their experiences in the search for answers about these conditions; and
- share what we're learning and help create connections between researchers, participants, and studies to quickly understand, prevent, and treat PASC, including Long COVID.
What is NIH doing to address the ongoing health effects of SARS-CoV-2 infection?
People leading RECOVER studies are experts in many areas of clinical care, research, and science. They are working together with participants to gather information about the ongoing health effects people are experiencing.
This information will come from clinical exams, health records, medical reports, records on the cause of death, and samples from human body tissue. The information will be collected and stored securely in a set of data storage systems in a way that protects privacy and patient information.
The information will be analyzed by researchers and scientists across the country so that we can quickly learn what is needed to prevent and treat PASC.
Have you finished planning the study? Who can look at the study plans?
We’re finished planning the full research protocols for adults and for children and families participating in RECOVER studies. Keep in mind that the study plans may change over time as we learn more. If the protocols change, we’ll update them on the RECOVER website, recovercovid.org.
We’ll continue to share the study plans for other RECOVER studies on recovercovid.org. We’ll share summaries of these plans in words that will make sense to more people. This way, scientists and people around the world can
- view them,
- ask questions,
- share ideas, and
- work together to make the research better.
We’ll also share the study plans with the people taking part in the RECOVER study (called study participants). Families, loved ones, caregivers, local support groups, or anyone else can look at the study plans.
About the science
What is PASC?
Currently, many words are being used to describe what can happen to people's health after they have been infected with the SARS-CoV-2 virus. It can be confusing when more than one word is used to mean the same thing, so we want to make it clear what these words mean.
What We Know: PASC, or post-acute sequelae of SARS-CoV-2, refers to the effects that the virus causing COVID can have on the body after the initial part of the illness.
The term "post-acute" means that the symptoms happen after the initial part of the illness. The word "sequelae" means "consequence."
PASC is a term that scientists are using to mean the possible long-term consequences of an infection from the virus that causes COVID after the initial part of the illness is over.
For some people, symptoms last weeks or months after the early infection is over. You may hear this condition referred to as Long COVID. Other people can get new symptoms later, even if they didn't have symptoms at the beginning of the disease.
We are also learning about symptoms from people living with Long COVID and those who call themselves "long haulers," along with other terms that have come up.
What is known about my symptoms and Long COVID?
Scientists are working hard to find out what symptoms can occur with Long COVID and why symptoms occur. Some people continue to have the symptoms they had when they were sick with COVID for weeks or months after they were first sick. Other people develop new symptoms later, even after they felt like they were no longer sick. Other people do not feel sick at all in the beginning, but show new symptoms weeks and months later.
Long COVID symptoms may happen in different parts of the body, like the lungs, heart, or brain. Many people have reported different types of symptoms like:
- problems breathing,
- a hard time concentrating or a feeling of "brain fog,"
- problems remembering things,
- feeling anxious,
- having a racing heart, and
- tiredness or weak muscles.
Others have reported headaches, loss of smell and taste, cough, and fevers that come and go. Sometimes symptoms seem to go away for a while, but then they come back.
Doctors and scientists are working to figure out why these symptoms occur and if they will go away on their own or need medical treatment, but we do not have answers yet.
Where can I learn more about symptoms others are experiencing?
There may be millions of people with long-term effects from infection with the virus that causes COVID-19. When it comes to Long COVID and more broadly, PASC (post-acute sequelae of SARS-CoV-2 infection), there are more questions than answers. All people who have PASC, including Long COVID, can have different kinds of effects for different amounts of time.
We are working with participants in RECOVER research studies to understand the symptoms that people with Long COVID have. Learn more about some of the common symptoms and ways that people experience Long COVID on the What is Long COVID page. As we learn more, we will share what we know on the RECOVER website and through other channels. To stay up to date on symptoms and research findings, sign up for email updates.
How RECOVER is paid for
How is RECOVER funded?
In December 2020, Congress directed the NIH to devote $1.15 billion to studying the long-term effects of COVID, including Long COVID. The NIH established the RECOVER Initiative in February 2021 and it has allocated funds provided through the American Rescue Plan (ARP) Act of 2021 (Sec. 2401) to support this effort. RECOVER awards were made 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 plan for RECOVER studies. To help manage the administration of the RECOVER initiative, Research Triangle Institute (RTI) International was selected to serve as the Administrative Coordinating Center (ACC).
In the summer of 2021, the NIH funded awards for the RECOVER Clinical Science Core (CSC) to New York University (NYU) Langone Health and Data Resource Core (DRC) at Massachusetts General Hospital to develop a network of sites across the country to study Long COVID. The Clinical Recovery Cohort Studies, led by the CSC, include more than 200 researchers from more than 25 institutions that have enrolling sites across the country. The DRC manages RECOVER data and biological samples to enable tracking and searchability across all data sources and provide expertise in statistical analyses and data standardization, access, and sharing. Read the press release describing this award.
These Cores help plan, set up, and supervise the studies. In addition to developing the materials needed to support the studies, these institutions are actively engaged in community outreach and engagement, striving to recruit all types of people to join and take part in the studies.
How have RECOVER funds been distributed to date?
For FY21 NIH has obligated about $510 million of the $1.15 billion in funding to establish the RECOVER Initiative, including the RECOVER research studies with active enrollment across the US.
RECOVER FY21 funding obligations include:
- $448.3 million to the RECOVER Clinical Science Core (CSC) at NYU Langone Health.
- $49.3 million to establish the RECOVER Data Resource Core (DRC) at Massachusetts General Hospital and the RECOVER Biorepository Core at the Mayo Clinic.
- $3.5 million established the RECOVER Administrative Coordinating Center (ACC) at RTI International.
- $8.9 million is being used to support the NIH management of the RECOVER initiative through specialized administrative and technical expertise.
The NIH is working to make more information about each of these investments available through the public research funding database NIH RePORTER.
Has there been any disruption or reallocation of RECOVER funds since they were originally granted that delayed RECOVER?
No. There has been no reduction to the $1.15 billion originally devoted to studying the long-term effects of COVID, and there has been no disruption of NIH activities.
A change did occur, however, in the primary funding source for RECOVER. After the initial funding, most of the funds were transferred to the Administration for Children and Families to cover COVID-related expenses of the Unaccompanied Children program at the Southwestern US border. RECOVER’s funding source then became the American Rescue Plan (ARP) Act of 2021 (Sec. 2401). These ARP funds are administered by the NIH under delegated authority from the Department of Health and Human Services.
For fiscal year 2021 (FY21) the NIH has obligated approximately $510 million of these ARP funds to support the RECOVER Initiative.
The amount includes funds to support the clinical cohort studies (the RECOVERY Meta-Cohort), electronic health record studies, and the Biorepository Core. This amount also includes previous awards for the Clinical Science Core, the Data Resource Core, the Human Tissue (Autopsy) cohort studies, and the Administrative Coordinating Center.
What is next for RECOVER and how will the remaining funds be used?
The NIH is now seeking applications to support clinical trials of treatments for people affected by the long-term effects of COVID. These trials are expected to be in two categories and the NIH is aiming to start the trials as soon as possible:
- Trials of treatments that have shown promise for other conditions related to Long COVID, such as sleep disorders, chronic pain, postural orthostatic tachycardia (POTS), post-intensive care unit (ICU) rehabilitation, and other conditions.
- Medicines targeting specific disease processes that have been identified by RECOVER observational studies or by other groups.
Congress allocated funds to support RECOVER research for four years. In addition to trials referenced above, remaining RECOVER funds will be used to support outyear activities for ongoing studies through this period.
The people in the studies
Who can participate in RECOVER studies?
RECOVER studies are underway at places all across the country. RECOVER is working hard to include groups of people that reflect the nation's population.
Different studies are enrolling different groups. These groups will include adults, children and their caregivers, pregnant individuals, and newborn babies. View the locations of the different types of RECOVER studies at studies.recovercovid.org.
How can I sign-up to join a RECOVER research study?
You can find a study near you and volunteer to participate in research using this link.
Clinical trials will also begin in the future. We will share the signup link on this site when those studies begin enrolling.
How can I find a research site near me?
RECOVER studies are enrolling groups of people at sites across the country. You can see the study sites at this link.
Study information from all the sites will be shared with all RECOVER researchers to help answer key questions faster. You can learn more about RECOVER studies on the How Research Works page.
Why is it important that RECOVER includes patients, caregivers, and community representatives?
The goal of the RECOVER Initiative is to improve our understanding of the long-term effects of COVID, enable treatments for people affected by COVID, and find ways to prevent these long-term effects.
We want to include patients, caregivers, and community representatives to help make plans for and provide suggestions on the research being done.
We also need to involve patients, caregivers, and community representatives as partners in the research process to help frame research questions, promote participation in the RECOVER studies, and ensure that people from all communities and backgrounds are included.
How can patients, caregivers, and community members get involved in RECOVER?
You don’t need to be enrolled in a RECOVER study to be involved. For example, anyone can stay informed by signing up for email updates. Over the next several months, there will be more opportunities to learn about the research and hear about the study findings. Information will be posted on recoverCOVID.org.
The National Community Engagement Group (NCEG) is central to RECOVER. NCEG provides a forum that promotes meaningful dialogue through authentic partnership and shared decision-making. The NCEG recognizes that equity and the experiences of patients, caregivers, and community representatives are critical to address the long-term effects of COVID.
Members of the NCEG are part of the Executive Committee, Steering Committee, 12 RECOVER Task Force Committees, 6 RECOVER Oversight Committees, and the PASC Intervention Prioritization Panel. Other patients, caregivers, and community representatives are engaging at local study sites and will contribute to developing RECOVER communication messages and materials.
How is RECOVER finding representatives?
The first groups of representatives were nominated by researchers from RECOVER study sites and through input from other researchers working on different initiatives across NIH, such as the Community Engagement Alliance (CEAL) Against COVID-19 Disparities. In the future, RECOVER will also consider people who nominate themselves to be representatives.
What happens after I am nominated to be a RECOVER representative?
If you’re nominated to be a RECOVER representative, we’ll ask you to fill out a brief survey online or over the phone.
This survey asks about:
- Your personal experience with COVID and Long COVID
- Your experience with research
- Your experience with community-engaged work (either on a profession or personal level)
- Why you want to be a representative
- How you hope to contribute to RECOVER
- Your interest in joining RECOVER Task Force and Oversight Committees or other engagement opportunities
- Your availability to attend RECOVER engagement meetings
- You and your background, including age, gender identity, race/ethnicity, and where you live
How are RECOVER representatives selected from those who are nominated?
A team from RECOVER reviews all survey responses for people who are nominated. Our goal is to include people with Long COVID and people from communities hardest hit by COVID.
We’ll include representatives
- from different backgrounds, including those who are of different races and ethnic groups, genders, ages, and education levels, and who live in different places;
- who can talk about issues important for children and teens;
- who can talk about issues related to human tissue donation; and
- who are and are not part of groups that advocate for and support people with Long COVID.
What happens if I am not selected as a RECOVER representative?
Even if you are not selected to be a RECOVER representative, there are other ways for you to help with the work RECOVER is doing. You can sign up for emails to stay up to date about what's happening with RECOVER, including joining webinars and related events.
The nominations process for RECOVER representatives will occur regularly. Representatives will serve for no more than 2 years. So if you’re not selected the first time around, there will be other chances for you to be selected.
How can I get more information about being a RECOVER representative?
If you have more questions about being a RECOVER representative, please contact the RECOVER Clinical Science Core, who manages the National Community Engagement Group, at RECOVER_CSC@nyulangone.org.
Study findings and reports
Where can I find research findings about Long COVID?
RECOVER research is now being published. Read about RECOVER Results on the Research page, including video summaries of recent findings.
Stay tuned to this website and sign up for email updates to be alerted when more study findings become available.
How will RECOVER change over time?
Right now, there are more questions about PASC and Long COVID than answers. So the research is now focused on rapidly getting answers. Learning more about PASC allows research and study ideas to evolve.
NIH will ask researchers to share their study ideas and the most promising ideas will lead to specific types of studies, called clinical trials. Clinical trials will test ways (like medicines and other therapies) to treat or prevent the long-term health effects of SARS-CoV-2 infection.
An important part of the RECOVER Initiative is that researchers will keep in touch with patients over a long period of time. This way, they can keep learning from participants and change their study approach as they understand more.
Where can I find Long COVID medical treatment in my area?
There are many different symptoms of Long COVID. You may need help from different types of doctors to treat your Long COVID symptoms and get the help you need. The types of doctors, or specialists, that can help might include cardiologists (heart doctors), pulmonologists (lung doctors), neurologists (brain and nervous system doctors), physical therapists, occupational therapists, or speech and language specialists. Some clinics now have many different specialists to treat patients with Long COVID.
Survivor Corps is a grassroots organization that keeps track of care centers that focus on taking care of people after they have COVID. You can find information about the care centers on their website (Post-COVID Care Centers — Survivor Corps). More clinics are joining this group every day. Your own doctor also may be able to help you find the right care for your needs.
Where can I find out about disability coverage?
Long COVID is a disability under the Americans with Disabilities Act (ADA) if it significantly limits one or more major "life activities" or "bodily functions." Some examples of life activities include caring for oneself, seeing, hearing, eating, sleeping, walking, speaking, breathing, thinking, and working. Some examples of bodily functions include the immune system, which fights infections; the heart and blood vessels; and the nervous system.
A health care provider will need to decide if a person's Long COVID condition or symptoms mean they have a disability.
You can learn more about disability coverage for Long COVID at this link from the U.S. Department of Health and Human Services.
How can I share my story and connect with other people impacted?
As the RECOVER Initiative changes, we will bring together and share the stories and experiences of people affected by PASC, including Long COVID. Stay informed about these events and the latest research findings by signing up for emails from NIH RECOVER.
What can I do to help prevent the long-term effects of SARS-CoV-2 infection?
The best way to protect yourself against long-term effects is to get vaccinated. Also, encourage your friends, family, and neighbors to get the vaccine. Here are ways you can find a COVID-19 vaccination site near you:
- Visit and search the Vaccines.gov website
- Text your zip code to 438829
- Call 1-800-232-0233