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
Research findings are available on the RECOVER Publications page and in the RECOVER Results section. When new RECOVER studies are published, we share them on this website and through other NIH channels.
We also work 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.
People leading RECOVER studies are experts in many areas of clinical care, research, and science. They work together with participants to gather information about the ongoing health effects people are experiencing.
This information comes from clinical exams, health records, medical reports, records on the cause of death, and samples from human body tissue. The information is collected and stored securely in a set of data storage systems in a way that protects privacy and patient information.
Researchers and scientists across the country analyze the information so that we can quickly learn what’s needed to prevent and treat Long COVID.
We’re finished planning the full research protocols for adults and for children and families participating in RECOVER observational 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
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 — the virus that causes COVID. 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.
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.
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.
Those working within RECOVER believe that this research could benefit not only people with Long COVID but also shed light upon other post-infection conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia, and others.
RECOVER studies will help the scientific community better understand the ways the virus affects the bodily organs and systems and why for many, the effects of SARS-COV-2 infection linger. These studies are involving experts in post-infection conditions and they may also teach us about other conditions and diseases with similar symptoms. View the list of post-infection illness experts working on RECOVER (PDF, 195 KB).
For more information about ME/CFS, the RECOVER Initiative, and Long COVID, view our FAQs: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Fact Sheet (PDF, 82 KB).
How RECOVER is paid for
In December 2020, Congress directed the National Institutes of Health (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 the Data Resource Core (DRC) at Massachusetts General Hospital to develop and support 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 are actively engaged in community outreach and engagement to recruit a diverse representation of adults, pregnant people, children, and adolescents to take part in the studies. 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.
NIH has obligated about $811 million of the $1.15 billion in funding to establish and carry out a comprehensive, multi-pronged, and integrated research approach to address PASC.
RECOVER funding obligations to date include:
- $481.2 million to the RECOVER Clinical Science Core (CSC) at New York University Langone Health to start up and implement the Clinical Recovery Cohort Studies, real-world data analyses through Electronic Health Records, and basic research or pathobiology studies.
- $171.5 million to launch RECOVER Clinical Trials through the Clinical Trials Data Coordinating Center (DCC) at Duke Clinical Research Institute, in partnership with the RECOVER Clinical Trials Administrative Coordinating Center (ACC) at RTI International.
- $111.8 million to the RECOVER Data Resource Core (DRC) at Massachusetts General Hospital and the RECOVER Biorepository Core at the Mayo Clinic.
- $9.9 million to the Administrative Coordinating Center (ACC) at RTI International to support the Clinical Recovery Cohort Studies, real-world data analyses through Electronic Health Records, and basic research or pathobiology studies.
- $36.5 million is being used to support the NIH management of the RECOVER initiative through specialized administrative and technical expertise.
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 obligated approximately $516 million of these ARP funds to support the RECOVER Initiative. The total obligated funds for RECOVER for FY21 and FY22 are $811 million.
The amount included funds to support the clinical cohort studies (the RECOVERY Meta-Cohort), electronic health record studies, and the Biorepository Core. This amount also included previous awards for the Clinical Science Core, the Data Resource Core, the Human Tissue (Autopsy) cohort studies, and the Administrative Coordinating Center.
The NIH will soon be launching clinical trials to evaluate treatments to improve symptoms related to the long-term effects of COVID. RECOVER is prioritizing exploring symptoms deemed most burdensome by patients.
Congress allocated funds to support RECOVER research for four years. In addition to trials referenced above, the remaining $339M of RECOVER funds will be used to support outyear activities for ongoing studies and participant follow up through this period.
The people in the studies
RECOVER observational and tissue pathology 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. The groups for observational studies include adults, children and their caregivers, pregnant individuals, and newborn babies. View the locations of the different types of RECOVER observational and tissue pathology studies at studies.recoverCOVID.org.
RECOVER clinical trial studies will begin enrolling soon. More information will be posted to recoverCOVID.org when enrollment begins.
You can find a RECOVER observational study or tissue pathology (autopsy) study near you and volunteer to participate in that research at studies.recovercovid.org.
RECOVER clinical trials will also begin in the future. We will share the signup link on this site when those studies begin enrolling.
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.
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.
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 this site.
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.
The first groups of Representatives were nominated by researchers from RECOVER observational 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.
If you are nominated to be a RECOVER Representative, you will be asked to fill out a brief survey online or over the phone about your:
- Experience with COVID and Long COVID
- Experience with research
- Experience with community-engaged work (professionally or personally)
- Description of why you want to be a Representative
- Description of how you hope to contribute to RECOVER
- Interest in joining RECOVER Task Force/Oversight Committees or other engagement opportunities
- Availability to attend meetings
- Information about your background including: age, gender identity, race/ethnicity, and where you live
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.
Even if you are not picked to be a RECOVER Representative, there are many ways for you to help with the work of RECOVER. We will let you know about ways you can stay up to date about what is happening with RECOVER - including joining webinars and roundtables. Also, because people can be RECOVER Representatives for 2 years at most, we will be opening the nomination and survey process regularly. Therefore, if you are not selected in the first round there will be other chances for you to get picked. It is our hope that you will continue to be interested in working with us on the work of RECOVER.
If you have more questions about being a RECOVER Representative for observational or tissue pathology studies, please contact the RECOVER Clinical Science Core, who manages the National Community Engagement Group, at RECOVER_CSC@nyulangone.org.
To request agenda items for the National Community Engagement Group (NCEG) or Representatives related to aspect of interest from internal RECOVER parties or for opportunities to engage NCEG on specific RECOVER matters, please send a request to RECOVER_CSC@nyulangone.org and include “NCEG and Representative Request” in the subject line.
The request should include the following information:
- Detailed Information on the nature of the request (e.g., wish to present to or inform Representatives on matter and updates, desire inputs from Representatives on specific RECOVER related matters, desire recommendation for representation in activities or on groups, etc.). If your request is related to a specific cohort (e.g. adults, children and teens, etc.), please indicate that as well.
- Level of priority (e.g., related to an upcoming event/activity/action, notice of a finding to be released, information on additional awards, etc.)
- Information about payment: Confirmation that there is payment available for the Representatives in this opportunity and if so, how much? Please note: the CSC (Clinical Science Core) is not responsible for payment outside the current governance structure
- Any necessary materials or supporting documents for the request
- The best point of contact for the request
A member of the Community Engagement Team will review your request and follow up in accordance with the priority level of the request.
Study findings and reports
Right now, there are more questions about PASC and Long COVID than answers. RECOVER research is focused on rapidly getting answers to those questions. Learning more about how PASC affects our bodies and how to predict, prevent, and treat PASC, including Long COVID allows for more research and study ideas to evolve.
An example of this is with RECOVER clinical trials. NIH has asked researchers to share their study ideas and some of the most promising ideas are leading to specific types of studies called clinical trials. RECOVER clinical trials will test ways (like medicines and other therapies) to treat or prevent the long-term effects of COVID.
An important part of some RECOVER studies is that researchers will keep in touch with patients over a long period of time. For those studies, this allows RECOVER researchers to keep learning from participants over time and to adjust their study approaches as they understand more.
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.
Investigators and clinicians with research expertise and clinical experience with post-infection syndromes, ME/CFS, and other illnesses are contributing within the RECOVER Initiative and participating in the Initiative’s oversight committees and working groups.
The list currently represents only individuals who have confirmed their area(s) of expertise. However, the list is likely to expand as others confirm and as the Initiative continues, and we will update the list on this site. View the list of post-infection illness experts working on RECOVER (PDF, 195 KB).
For more information about ME/CFS, the RECOVER Initiative, and Long COVID, view our FAQs: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Fact Sheet (PDF, 82 KB).
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.
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.
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