Communicating About Long COVID

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While many people recover quickly from COVID-19, some have symptoms long after their initial infection.  Help community members recognize signs and symptoms of Long COVID and get care they need.  

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Here are some answers to questions you may hear from people in your community. Hearing something different? Email us at [email protected] to tell us what questions you need answered!

What is Long COVID?

Long COVID affects people for weeks, months, or even longer after getting COVID-19. The symptoms may make it hard to carry out daily activities.

Are there other names for Long COVID?

Long COVID may also be called long-haul COVID, post-COVID conditions, chronic COVID, and post-acute sequelae of SARS-CoV-2 (PASC).

When do symptoms start? How long do they last?

Long COVID symptoms can start soon after infection, or they may not start until after recovery from COVID-19 sickness. Symptoms may come and go. They may also go away completely with time.

Are the symptoms of Long COVID the same as the symptoms of COVID-19?

The symptoms of Long COVID may be different than the symptoms of COVID-19. Some people who didn’t feel sick when they first got infected go on to develop Long COVID.

What are the symptoms?

Long COVID does not affect everyone the same way. It can affect many different parts of the body. Common symptoms include:

  • Feeling weak and tired
  • Trouble breathing
  • Trouble thinking
  • Fast-beating or pounding heart
  • Trouble sleeping
  • Headache
  • Fever
  • Feeling anxious or depressed

Who is more likely to get Long COVID?

Scientists are working to understand this question. They think people are more at risk if they:

  • Had severe COVID
  • Had other health conditions such as diabetes or a lung condition before getting COVID
  • Did not get a COVID vaccine

Is Long COVID preventable?

Vaccination lowers the chances of getting COVID-19 and then getting Long COVID. Community members can also take other steps to avoid COVID-19, like wearing a mask indoors in areas with high CDC COVID-19 Community Levels.

Get Involved

Talk to people about Long COVID

Long COVID is real. Here are some tips for how to discuss it with people who have symptoms.

  • Affirm the significance of their symptoms and let them know what they are feeling is real. 
  • Ask them to talk to a health care provider. While there is no specific test or treatment for Long COVID, a health care provider may do tests to better understand each person’s symptoms. They can also work with the person to create a treatment plan that manages their symptoms.
  • Help people get ready for a health care appointment by reminding them to have the following information with them:
    • A brief history of their experience with COVID-19 and Long COVID
    • A list of medications
    • A list of questions and concerns

Volunteers can help scientists understand Long COVID

The Researching COVID to Enhance Recovery (RECOVER) Initiative is a study that aims to understand, prevent, and treat Long COVID. RECOVER hopes to understand how many people have Long COVID, who is at risk, and why some people recover while others do not.

Anyone can help us learn more about Long COVID by volunteering to participate. This includes people who currently have COVID, people who had COVID in the past, and people who have never had COVID. Recovercovid.org has more about how to join the study.

It is important that people from all walks of life participate in research, including children and pregnant people, to better understand how Long COVID affects different people. Studies need to include people of all races and ethnicities, genders, ages, jobs, education levels, incomes, health conditions, and U.S. locations. It is especially important that communities of color are represented in research because they have been hit especially hard by COVID-19.

Bring community voices to Long COVID research

The RECOVER Initiative values the perspectives of patients, caregivers, and community members. Feedback from people across the country has shaped RECOVER research from the beginning and continues to shape the Initiative’s activities and communications. RECOVER wants to hear from more people about their lived experiences, even if they don’t participate directly in the study. Contact RECOVER to share your voice.

Share how research volunteers are more protected than ever before

Volunteers’ rights and well-being are protected when they enroll in a research study. Scientists have learned from mistakes of the past and have made major changes to how they conduct research. They take great care to protect people and their personal information. Every study undergoes rigorous review at each phase: before, during, and afterwards.

Researchers are required to protect personal information. All government-funded studies in the United States, including RECOVER, have several groups that watch over the research. This includes independent groups that are separate from the people conducting the studies. To read more about some of the people working to protect research participants, check out the CEAL Scientific Pathway.

Published: December 7, 2022