For many people, recovery from COVID-19 is only the beginning of another debilitating and ongoing health struggle known as Long COVID. The Centers for Disease Control and Prevention (CDC) estimates that one in five adults in the United States suffers from Long COVID— symptoms or conditions that persist or emerge weeks or even months after the initial illness of COVID-19 has passed. Long COVID has shed light on the complex challenges that people with similar chronic conditions or syndromes often face. Infections can sometimes trigger long-term illnesses that persist for years and present a wide array of symptoms, making them difficult to diagnose and treat. Through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program, the CDC Foundation, in partnership with CDC, will bring together patient advocacy groups and community-based organizations (CBOs) focused on raising awareness and helping people with Long COVID and similar illnesses. These groups will work together to identify common objectives and opportunities to collaborate. 

"By working together, we can have more impact and help people living with these devastating diseases," said Elizabeth Unger, MD, PhD, chief of the Chronic Viral Diseases Branch at CDC. "As we confront this growing health crisis, the public health community has much to learn from patient advocates who know firsthand what it's like to live with these illnesses."

People with Long COVID can develop symptoms, including activity limitation, difficulty breathing and chest or muscle pain, that are hard to distinguish from other causes. These symptoms can persist even when medical exams such as x-rays and blood tests are normal, making it difficult for patients to get an accurate diagnosis or care. Long COVID can severely hinder a person's ability to work, attend school or engage in everyday activities. These are struggles that many people with infection-related chronic conditions—including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia and post-treatment Lyme disease syndrome (PTLDS)— also experience.

Patient advocacy groups and CBOs are crucial partners in raising awareness, supporting research and sharing information about these poorly understood chronic illnesses. They have helped educate people with infection-related long-term health problems on how to communicate with their health care providers and push back against skepticism. These organizations will be essential allies because they know where gaps in understanding exist and what is needed for positive change.

"Forming these meaningful partnerships with patient advocacy groups and CBOs will allow us to better understand and support those living with the life-altering effects of Long COVID and similar illnesses," said Judy Monroe, MD, president and CEO of the CDC Foundation. 

The ICUE project will fund up to three organizations to develop collaborations, tools and strategies to address the concerns and challenges of people living with Long COVID, ME/CFS and similar infection-related long-term illnesses.

This project is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $250,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.