Public Health > Divisions & Offices > Offices > Office of Epidemiology Surveillance Emerging Diseases > Non-Communicable Diseases > Long COVID Program

Living With Long COVID

The U.S. Department of Health and Human Services, Administration for Community Living’s programs may be able to help you find services and support for people with disabilities, including those who may not identify as having a disability but struggle with daily tasks. To learn more, visit How ACL's Disability and Aging Networks Can Help People with Long COVID (PDF).

Do you need help applying for disability benefits? HCPH Connectors are available: HCPH Connect: Resource Navigation.

The following is not medical advice. Always consult with a health care provider before managing symptoms at home.

World Health Organization: Support for Rehabilitation Self-Management after COVID-19-Related Illness
Tips for managing stress, daily activities, and symptoms of long COVID through diet, exercise, health care, and at-home activities.
National Health Service (England): Your COVID Recovery: I think I have long COVID
Tips for resuming activities, managing your energy, and more.
CDC: Patient Tips: Healthcare Provider Appointments for Post-COVID Conditions
Tips for talking with a doctor about your long COVID symptoms.

Research studies you can take part in:

RECOVER Initiative: The National Institutes of Health (NIH) has launched a nationwide research initiative on long COVID and is inviting long-COVID sufferers to participate in studies. Visit recovercovid.org to learn more.

Resources for employees and employers

U.S. Department of Labor, Office of Disability: Coronavirus Resources: COVID-19 and Long COVID - Information on job accommodations, returning to work, employee rights and benefits, and more.
U.S. Equal Employment Opportunity Commission: What You Should Know About COVID-19 and the ADA, the Rehabilitation Act, and Other EEO Laws - Up-to-date technical assistance questions and answers for employers and employees.
Office of Disability Employment Policy Job Accommodation Network (JAN): Accommodating Employees with COVID-19-Related Symptoms - Includes ideas for workplace accommodations. Employees and employers may also contact JAN for one-on-one consultation: 800-526-7234.
U.S. Department of Health & Human Services (HHS): Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557 - Information on long COVID as a disability under the Americans with Disabilities Act (ADA).
Social Security Administration: Disability Benefits | How You Qualify
Employer Assistance and Resource Network on Disability Inclusion: COVID-19 Workplace Resources and Tools - Resources to help employers protect the health and safety of their employees during the COVID-19 pandemic as well as during the recovery.

Resources for caregivers, schools, and more

Children and teens with post-COVID conditions can experience challenges with concentration, memory, mental health, and/or physical activity. Accommodations may be needed to help them attend school, complete schoolwork, or perform usual activities.

School administrators, counselors, and nurses can work with families and health care professionals to provide extra time for tests, scheduled rest periods throughout the day, a modified class schedule, or similar accommodations. Arrangements should also be considered for activities outside of school, such as sports, clubs, scouting, etc.

Resources:

Long COVID under Section 504 and IDEA Resource to Support Children, Students, Educators, Schools, Service Providers, and Families (PDF) - From the U.S. Department of Education’s Office for Civil Rights (OCR) and the Office of Special Education and Rehabilitative Services (OSERS).
National Association of School Nurses: Long COVID—The New “Invisible” Illness: How School Nurses Can Support the Nursing and Educational Teams for Student Success (PDF) - Includes suggestions for assessments, plans, and accommodations. Published December 2021.
Inside Higher Ed: Supporting Students with Long COVID: A Workbook for Disability Service Providers (PDF) - Considerations for intake interviews and documentation.
Inside Higher Ed: Supporting Students with Long COVID (article)
Kennedy Krieger Institute: Supporting a Student with Long COVID (PDF) - Considerations for educators.
American Academy of Pediatrics (AAP): Post-COVID-19 Conditions in Children and Adolescents - For health care providers navigating follow-up care of infants, children, and adolescents after COVID-19.
AAP: COVID-19 Interim Guidance: Return to Sports and Physical Activity - Considerations for returning to sports and physical activity.
Long COVID Kids: Supporting Children Living with Long COVID to Manage Their Energy with Pacing Penguins - Information to help kids and parents understand and describe fatigue, plus a poster with graphics to help support recovery.

Long COVID advocacy and support groups

Online support groups:

Body Politic COVID-19 Support Group - A support group for people who are experiencing long COVID. Members can chat online with people who also have long COVID and support each other.
COVID-19 Recovery Collective - An online space for people to share their COVID-19 recovery story.
Long COVID Kids - Support, education, and advocacy opportunities for parents and caregivers of children with long COVID.
Patient-Lead Research Collaborative - A self-organized group of people with long COVID working on long COVID research based around their personal experience. The group has developed surveys for people who have long COVID to help learn more about the condition.
Survivor Corps - An online group that offers connection, support, and education for those affected by COVID-19.
Long COVID Alliance - A network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
Voices of Long COVID - The Voices of Long COVID campaign features testimonials from a diverse group of people ages 18-29 who are suffering from long-term complications of COVID-19 infection.