Experts estimate that up to 23 million Americans have been affected by long COVID, leaving nearly one million unable to work, with others having to reduce their work hours and/or responsibilities. Researchers are still investigating the full scope of long COVID’s health and economic impacts, and policymakers seek answers regarding how best to support patients and their families. Here is an overview of what we know so far, and what’s being done about it.

Symptoms, Risk Factors, and Causes

Long COVID is a post-viral syndrome that can damage multiple organs and tissues. Common symptoms include fatigue, cognitive impairment, muscle and/or joint pain, shortness of breath, racing or irregular heart beat, mood changes, and difficulty sleeping. Patients have reported approximately 200 symptoms possibly related to long COVID.

To-date, scientists have identified several potential risk factors, among them severe COVID-19 illness and preexisting medical conditions (particularly type 2 diabetes). Evidence indicates that COVID-19 vaccination may reduce the risk of developing long COVID. 

Researchers have identified several possible causes of long COVID and have suggested that causes may vary from person to person:

• An antibody that mimics SARS-CoV-2, triggering an autoimmune response 
• The SARS-CoV-2 virus persisting in hidden reservoirs throughout the body 
• Organ damage resulting from the acute COVID-19 illness
• The formation of microscopic clots that block blood flow and cause tissue damage
• Immune system disruption that reactivates dormant viruses such as Epstein-Barr 

The National Institutes of Health’s RECOVER initiative is using electronic health records to group common characteristics among tens of thousands of patients who are sharing their health data through a cloud-based platform. The hope is that the data will help identify long COVID causes and risk factors.

Diagnosis and Treatment

Due to the syndrome’s complexity, and to doctor skepticism–particularly in the early months of the pandemic–many patients have found it challenging to get a diagnosis of long COVID. Those with multiple symptoms, especially symptoms across multiple organ systems, may need to see several specialists. Delays in obtaining a diagnosis means delays in accessing clinical care and support services. 

Research is ongoing to develop more effective ways to diagnose and treat long COVID. Some doctors are relying on SARS-CoV-2 antibody tests to try to confirm previous infections, then systematically ruling out other conditions that cause comparable symptoms. Treatment strategies address each patient’s particular combination of symptoms, and may include steroids, anti-inflammatory medications, and physical and occupational therapy. 

Policy and Patient Support

Funding medical research is only one step that the federal government has taken to support long COVID patients. 

• In 2021, the Departments of Justice (DoJ) and Health and Human Services (HHS) listed long COVID as a disability under the Americans with Disabilities Act of 1990. 
• Patients who meet certain qualifications may be eligible for Social Security Disability benefits. 
• The CDC developed long COVID guidelines for healthcare providers and the public. 
• The Administration for Community Living (ACL) published a community resource guide to help connect affected people to services like transportation and personal care attendants.

Non-governmental organizations also continue to address the crisis. The National Academies of Sciences, Engineering, and Medicine is holding a public workshop to discuss the impacts of long COVID on children, mental health, and labor, along with the effects of vaccines. 

Policymakers continue their efforts to bolster research initiatives, develop support programs, and guide healthcare professionals to provide long COVID patients with the care and assistance they need. 

*U.S. Government Accountability Office. (2022, Mar. 2). Science & Tech Spotlight: Long COVID. https://www.gao.gov/products/gao-22-105666