Background

Infection Associated Chronic Conditions (IACCs) are chronic medical conditions that are initially triggered by an infection. While many different pathogens have been associated with the development of IACCs, different IACCs share several common features:

• IACCs tend to cause severe impacts to quality of life;
• IACCs typically impact a disproportionately high rate of female patients;
• IACCs are often characterized by neurological or immunological pathology; and
• IACCs comprise diffuse organ system interactions; and require multidisciplinary care.

Millions of Americans were living with IACCs prior to the COVID-19 pandemic, but the exact number is unknown. Large-scale epidemiological studies identifying the number or percentage of Americans with any IACC has not been undertaken to date. US population estimates of just a few IACCs published before or at the start of the COVID-19 pandemic suggest that these conditions were already widespread

About the Project

The global COVID-19 pandemic has created unprecedented awareness of the long-term health effects of IACCs. The number of people living with Long COVID-associated conditions or other infection-associated conditions—including myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome and other forms of dysautonomia, mast-cell activation syndrome, persistent Lyme disease/chronic Lyme disease and more—continue to increase.

Through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program, the CDC Foundation, in partnership with the Centers for Disease Control and Prevention (CDC), are bringing together patient advocacy groups and community-based organizations focused on raising awareness and helping people living with IACCs to identify common priorities and opportunities to collaborate, including exploring the development of an IACC Patient Advocacy Coalition (IACCPAC).

Summary Report

We’re pleased to announce that the first summary report, following our series of workshops on the needs and priorities of the infection-associated chronic conditions patient community, by the IACCPAC—a part of the IACCPAC Initiative, led by The Long Covid Alliance, Solve ME/CFS Initiative, COVID-19 Longhauler Advocacy Project, Dysautonomia International, and Patient-Led Research Collaborative, with support from the CDC Foundation through the ICUE program—is now available and can be accessed here.

Partners

• Dysautonomia International
• Commonality, Inc.
• Solve ME/CFS Initiative, Inc.
• Patient-Led Research Collaborative
• COVID-19 Longhauler Advocacy Project

This project is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $77,990 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.