​Understanding Long COVID

Posted by Reeve Staff in Daily Dose on July 21, 2022 # COVID-19

covid blocksThe COVID-19 pandemic led to several personal, work, and social changes. At first, no one knew what to expect or how to keep themselves safe from it to protect themselves. COVID-19 was a challenge to public health officials across the globe.

Globally people were struggling with the effects COVID-19 had on their mental and physical health. Those who were diagnosed with COVID-19 experienced different levels of the disease. In addition, the people affected by COVID-19 reported several other side effects. While there are too many to list, there are at least 98 symptoms people have felt from the disease. In many cases, these symptoms, initially felt when someone had COVID-19, can carry over and become long-term COVID-19 symptoms.

Defining Long COVID

The World Health Organization (WHO) released a definition for long COVID in 2021. The WHO acknowledges that most do recover from COVID-19. Approximately 10% to 20% will experience new, returning, or lingering effects weeks or months after their initial infection. Yet, until the WHO came up with a standard definition, medical officials and scientists faced difficulties diagnosing and providing the necessary care. The objective of defining the long-term effects of COVID-19 as long COVID was to advance advocacy, research, care, and recognition of patients' needs. The definition of long COVID is "occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset of symptoms that last for at least two months. Another diagnosis of a disease cannot explain these symptoms." Common symptoms include

  • Fatigue
  • Shortness of breath
  • Cognitive dysfunction – for example, brain fog
  • Partial or complete loss of taste
  • Depression
  • Anxiety
  • Sleep issues

The symptoms listed above and other symptoms associated with COVID impact your everyday life. You may not feel like yourself. If you're unsure if you have long COVID, see the Centers for Disease Control and Prevention's (CDC) web page for more symptoms.

Long-Term Effects of COVID-19

Continued research has produced several insights into the long-term effects of COVID-19. Initially, researchers and medical professionals viewed COVID as a respiratory disease. However, over time researchers discovered that COVID-19 also affects the brain and nervous system. Researchers also report that there doesn't appear to be extensive damage to the brain cells by COVID-19. Instead, the neurological effects may result from immune activation, neuroinflammation, or damage to the blood-brain cells.

As public health researchers and medical experts learned more about the disease, they shared their information with the public. The experts also warned those in high-risk groups, the elderly, immunocompromised, and those with disabilities, to help protect themselves by getting vaccinations. The officials believed people who received vaccinations would be protected from getting COVID-19 or experiencing lesser symptoms. However, officials continue to encourage those in high-risk groups and the general population to get a vaccination or a booster shot.

At-Risk Populations

FAIR Health released a study stating that most people suffering from long COVID were not hospitalized when diagnosed. In addition, the study found the elderly are the most vulnerable and have a heightened risk of serious complications. Yet, those between the ages of 36 to 50 had a higher chance of developing long COVID.

The level of risk between men and women was also highlighted in the study. The majority of long COVID patients were women. However, they have a decreased risk of death from COVID-19 than men. Although most people with long COVID were not hospitalized, a higher percentage of women than men diagnosed with long COVID were not hospitalized.

Researchers also discovered that almost one-third of people diagnosed with long COVID did not have a pre-existing condition. That is good news for those without a pre-existing condition, but those with pre-existing conditions need to pay attention to how they feel.

The FAIR Health study doesn't include the racial or ethnic breakdown of those affected by long COVID. Because of this, patient advocates, clinicians, and lawmakers worry that those disproportionately affected by long COVID aren't being recognized. Therefore increased attention to accounting for the impact on vulnerable populations is crucial. COVID-19 patient advocates explain there is an issue with core equality in every step of COVID-19 research and treatment. They call for real-world, patient-generated evidence in long COVID research. Additionally, they want partnerships between the long COVID community and critical stakeholders like those in the medical community.

The lack of evidence-based data leaves several unanswered questions: Why are some groups harder hit than others, and how can those patients receive the care they need? Researchers emphasize the need to pay more attention to long COVID because they believe long COVID is a shadow pandemic that won't disappear.

President Biden's Long COVID Strategy

President Biden's Presidential Memorandum directing the Secretary of Health and Human Services to coordinate an effort across government agencies to address long COVID strategy is exciting.

President Biden's long COVID strategy focuses on the symptoms and lingering effects people experience with long COVID. His objective is to increase research and discover ways to treat long COVID. In addition, the strategy will find ways to act on recommendations from the Presidential COVID-19 Health Equity Task Force.

The Department of Health and Human Services (DHHS) will lead the coordination of a comprehensive action plan to address long COVID. The government plans to take a three-pronged approach to help those with long COVID. First, the DHHS intends to release a report 120 days after the initiative starts to let those with long COVID know where resources for services and support exist, increase efforts to enroll individuals in clinical trials, and work on providing federal protections for those with long COVID.

The goal of increasing access to services and support includes raising awareness of the increased risk long COVID poses as a potential cause of disability. Additionally, the strategy plans to translate research into an inclusive disability policy. As the scientific community discovers more about long COVID and its effects, the government will update its disability policy guidelines. Additional protection for those with disabilities resulting from long COVID is defined as a disability under the Americans with Disabilities Act (ADA).

The push to increase enrollment in clinical trials will include a focus on engaging communities that might be overlooked. Without participation from all communities (disabled, LGTBQ+, or ethnic), studies won't comprehensively understand how long COVID affects the whole population.

Advancing or creating federal protections for those with long COVID can help those experiencing social or workplace discrimination. In addition, increased protections address the financial, mental, and physical needs of long COVID sufferers.

The Presidential Memorandum also includes a provision for the DHHS to release a report detailing services and support systems across agencies to aid those with long COVID, experiencing the loss of a loved one due to long COVID, or mental or substance use issues. Acknowledging the full effect of long COVID on an individual or their family helps others understand why there is a need for increased research.

Another part of the strategy is to expand the networks of long COVID clinics run by the Department of Veterans Affairs. Experts say they're already discovering and sharing new ways to care for long COVID patients. Federal officials are using a new patient-based project called Health + project to solicit responses from those with long COVID.

Researchers and medical professionals studying the effects of long COVID see President Biden's plan as a positive step forward in helping those with long COVID. But, first, the strategy is acknowledging the existence of long COVID.

Available Resources

There are other sources of help if you have long COVID. The Administration for Community Living has several programs. Furthermore, disability and aging or elderly networks also have programs that can assist you. All the programs these networks provide support your needs as a person with a disability.

Knowing where to start is a challenge. While several helpful programs are available, learning how to access them is crucial. You can begin by calling the Disability Information and Assistance Line (DIAL). DIAL's services include letting you know what services or programs you may qualify for and connecting you to them. The organization will also help you get a vaccination, keep an appointment, make one, or find a site. You can contact them at (888) 677-1199 Monday-Friday from 9 am to 8 pm (EST). Or you can email them at [email protected]. Another agency that can help you is the Aging and Disability Resources Centers (ADRCs). These agencies are found through Eldercare Locator.

Long COVID affects your life and the lives of those who love you. The combination of President Biden's Long COVID Memorandum, a push for research, and the voices of patients and advocates can bring awareness to the plight of those with long COVID.

Christina Sisti, DPS, MPH, MS is a bioethicist and health care policy advocate. She works to create awareness and improve health care policy for those with long-term health issues.

This publication was supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $160,000 with 100% funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, ACL/HHS or the U.S. government.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.