Curious about the long COVID Survey? Jump to How We Are Learning More
Post-COVID Conditions are physical and mental health problems that can be ongoing or develop four or more weeks after being infected with SARS-CoV-2, the virus that causes COVID-19. Post-COVID conditions can cause a wide range of new health problems with ongoing symptoms.
Post-COVID conditions are called many names, including: long COVID, PASC (post-acute sequelae of SARS-CoV-2 infection), long-term COVID-19, or chronic COVID. Some people with post-COVID conditions call themselves "long-haulers." People with post-COVID conditions experience new, returning, or ongoing symptoms and/or new health conditions long after they had COVID-19. The symptoms and severity of post-COVID conditions differ from person to person.
What we know about long COVID
There is still a lot to learn about COVID-19 and post-COVID conditions. Most people with COVID-19 recover and return to their normal lives within a couple of weeks. Yet, some people experience new or ongoing symptoms that last for weeks or months. Additionally, others may develop new health conditions after having COVID-19. We still don't know exactly why some people develop post-COVID conditions and what determines the type of condition(s) they will experience. We do know that post-COVID conditions can impact an individual’s overall health and keep people from being able to do their usual daily activities.
- Post-COVID conditions can include a wide range of ongoing symptoms and health problems that can last weeks, months, or even years.
- Anyone who gets sick with COVID-19 can develop post-COVID conditions. However, it is more common for people who had severe COVID-19 illness to experience post-COVID conditions.
- People who are not vaccinated against COVID-19 and get sick may be at a higher risk of developing post-COVID conditions compared to people who were vaccinated. Research suggests that people who are vaccinated and test positive for COVID-19 are less likely to report post-COVID conditions, compared to people who were not vaccinated.
Who can get long COVID?
Anyone who had COVID-19 can get post-COVID conditions, even children, and young adults. Most people with post-COVID conditions have previously tested positive for COVID-19. It is possible for someone to develop a post-COVID condition even if they had a mild or asymptomatic SARS-CoV-2 infection. There is currently no test to diagnose post-COVID conditions. This can make it difficult for health care providers to recognize and diagnose post-COVID conditions.
Studies on post-COVID conditions have shown that some people, especially those who had severe COVID-19 illness, may be more likely to develop new health conditions such as diabetes, heart conditions, or a neurological condition compared with people who have not had COVID-19.
The best way to stay protected against post-COVID conditions is to protect yourself against COVID-19. Practicing prevention strategies like staying up to date on COVID-19 vaccines, isolating and quarantining when necessary, and wearing a well-fitting mask when recommended, can help keep you and others from getting sick. Current research shows that people who are vaccinated are less likely to develop post-COVID conditions compared to people who are not vaccinated.
Some people are more likely to experience post-COVID conditions. This includes:
- People who did not get a COVID-19 vaccine and became infected with SARS-CoV-2
- People who experience multisystem inflammatory syndrome (MIS) during or after their COVID-19 illness
- Some people affected by health inequities, including people from racial or ethnic minority groups
- People with disabilities
- Older adults
- People with underlying health conditions
- People who were very sick or hospitalized when they had COVID-19
DHS recognizes that structural racism, discrimination, and other factors have contributed to the disproportionate impact of COVID-19 on Black, Brown, Indigenous, and other communities of color.
What are the symptoms associated with post-COVID conditions?
Symptoms of post-COVID conditions are likely to begin about four weeks after initial infection with SARS-CoV-2. People who experience ongoing symptoms likely have a post-COVID condition if they are still experiencing symptoms four or more weeks after the initial infection. We are still learning about post-COVID conditions, but the most common symptoms include:
- Shortness of breath
- Chest pain
- Trouble sleeping
- Difficulty thinking, concentrating, or remembering things (sometimes referred to as "brain fog")
- Depression or anxiety
- Joint or muscle pain
- Tiredness or fatigue
- Loss or change of smell or taste
- Dizziness on standing
- Fast-beating or pounding heart (also known as heart palpitations)
- Symptoms that get worse after physical or mental work
New health conditions
People, especially those who had severe COVID-19, may experience multiorgan effects or autoimmune conditions as a result of having COVID-19. If you experience multiorgan effects, it means organs in your body, such as the heart, lung, kidney, skin, or brain, may have may have become damaged from COVID-19. This causes your organs to act differently. Research suggests that people who have experienced these effects may be at an increased risk of developing new health conditions such as diabetes or heart disease, compared to those who have not had COVID-19.
Is there a treatment for long COVID?
There is currently no proven treatment for long COVID. Health care providers can provide care to reduce symptoms of long COVID. Some people with long COVID may experience symptoms that are not explained by medical tests, making these conditions difficult to explain and manage. For example, clinical evaluations of post-COVID conditions may not be detectable through routine blood test chest x-rays and electrocardiograms since these tests may come back normal.
DHS, along with the Centers for Disease Control and Prevention (CDC), is working to learn more about long-term COVID-19 symptoms and who is most at risk for getting long COVID.
If you are experiencing post-COVID conditions, support is available. You can get medical care at Post-COVID Care Clinics throughout Wisconsin. You can also talk with your doctor or a health care provider about your long COVID symptoms. Social support is available too. See the list below to learn about options for medical care and social support groups.
If you do not have health insurance or need help finding a doctor or mental health support, call or text 211 Wisconsin.
Medical care for long COVID in Wisconsin
If you have symptoms of long COVID, call your doctor or a health care provider to discuss options for care. The following Wisconsin health systems provide care for people with long COVID. This list may not include all of the options for care in Wisconsin
- Ascension Wisconsin Health Center
- The Post-acute COVID Care program at Ascension treats long COVID symptoms for both current Ascension patients and non-patients
- Appointments for those experiencing long COVID are available at the following Ascension Health Center locations:
- Call 1-833-660-1642 to learn more and schedule an appointment.
- Froedtert and Medical College of WI:
- The Post COVID Care Program treats long COVID symptoms for Froedtert and Medical College of Wisconsin patients.
- Only Froedtert and Medical College of WI patients are eligible and must get a referral from their doctor to the Post COVID Care Program.
- Call your doctor at Froedtert or Medical College of WI to schedule an appointment.
- Courage Kenny Rehabilitation Institute - Allina Health:
- Courage Kenny Rehabilitation Institute in River Falls, WI, offers three COVID-19 recovery programs for both current patients and non-patients.
- Services include inpatient care, behavioral health care, fitness based physical therapy, and more.
- Call 612-262-7900 to learn more and schedule an appointment.
- Mayo Clinic Health Systems:
- Mayo Clinic offers two programs to help treat long COVID symptoms for both current Mayo Clinic patients and non-patients. You do not need a referral from a doctor.
- If you are experiencing long COVID and it has been less than 90 days from when you first tested positive for COVID-19, call 507-284-4340 to learn more and schedule an appointment.
- If you are experiencing long COVID and it has been more than 90 days from when you first tested positive for COVID-19, call 507-284-4852 to learn more and schedule an appointment.
Western and Northeast Wisconsin
- Prevea Health:
- The Prevea health COVID Recovery Clinic treats long COVID symptoms for both current Prevea patients and non-patients.
- Call your doctor at Prevea to learn more and schedule an appointment.
- If you do not currently have a doctor at Prevea, call a Prevea Health Clinic near you to learn more and schedule an appointment.
- Bellin Health
- Bellin Health treats long COVID symptoms for both current Bellin patients and non-patients
- Call your doctor at Bellin Health to learn more and schedule an appointment.
- If you do not currently have a doctor at Bellin Health, call the Bellin Health long COVID Hotline at 920-445-7395 to get connected to the care you need.
Long COVID support groups and opportunities to share your story
Support groups can help people with long COVID feel connected and heard. DHS does not endorse any of the following sites and encourages anyone who is interested in joining a group to research them before joining or attending. If you need help finding a doctor or mental health support, call or text 211 Wisconsin for help.
- Wisconsin COVID Long Haulers - Private Facebook group
- Support and advise for Wisconsin residents and their families who have long COVID.
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.
- Patient Safety Learning
- A guide for talking with a doctor about your long COVID symptoms.
- Support for Rehabilitation Self-Management after COVID-19-Related Illness (World Health Organization)
- Tips for managing stress, daily activities, and symptoms of long COVID through diet, exercise, health care, and at-home activities.
- Survivor Corps
- An online group that offers connection, support, and education for those affected by COVID-19.
Support for employees with long COVID
Long COVID symptoms can make it difficult to return to your daily responsibilities. If long COVID symptoms have made it difficult or impossible for you to return to work, connect with a Disability Benefit Specialist for support.
Resources for health care providers
- CDC provides an overview on post-COVID conditions for health care providers.
- CDC provides interim guidance for evaluating and caring for patients with post-COVID conditions.
- Survivor Corps has created a post-COVID Best Practice Guide for health care providers, and facilities seeking to establish a multi-disciplinary Post-COVID Care Center.
DHS is conducting a study involving approximately 30,000 Wisconsinites to help us better understand long COVID. The results of this survey will help the CDC develop a well-informed case definition for long COVID and help us better meet the needs of people with COVID-19 in the future.
How is DHS recruiting participants?
DHS is contacting a proportion of Wisconsinites who have been tested for COVID-19 about completing the survey. Some people received an email from DHSSelf-Reporting@dhs.wisconsin.gov in May or June 2021; other people may receive a phone call in the coming months about the survey.
The survey is being distributed in two phases. The first phase was an online survey. People who participated in the first phase will not be contacted again for the second phase of the project.
The second phase, which is ongoing, is a phone survey among people who previously tested positive for COVID-19, and also those who have tested negative. Surveying people who have tested both positive and negative helps us get a better idea of which symptoms are more common across all people and which are specific to those who have had COVID-19.
Why is this survey important?
As with any new virus, there is still much more to learn. We know that there are individuals who become sick with COVID-19 and continue to experience symptoms for weeks, or even months.
This survey asks people who have previously tested either positive or negative for SARS-CoV-2 to report their symptoms. This survey will help inform health care providers and the general public about long-term COVID-19 symptoms. Understanding long COVID is an important step toward providing support for individuals experiencing long-term symptoms of COVID-19.
How is privacy maintained?
Your answers to the survey questions will be stored in a secure, password protected electronic database. Any data shared with the CDC will be de-identified from your personal information before being shared with the CDC.
What if I have questions?
If you have questions about the long COVID survey, you can email DHSCOVIDPublicHealthSurvey@dhs.wisconsin.gov.
To learn more about long COVID and the other Post-COVID conditions including multiorgan effects of COVID-19 and effects of COVID-19 treatment or hospitalization, please visit the CDC Post-COVID Conditions webpage.