Infection-Associated Chronic Conditions Initiative
About IACCI
The IACC Initiative was established to address the urgent and growing issue of infection-associated chronic conditions. This initiative aims to unify research, patient advocacy, clinical care, and policy under one collaborative effort to better understand the root causes of IACCs and to push for effective treatments, cures, and systemic change within healthcare with a focused on ensuring that healthcare systems, researchers, and policymakers recognize the interconnectedness of these conditions and work toward solutions that will benefit the millions of individuals affected.
What Are Infection-Associated Chronic Conditions (IACCs)?
Infection-associated chronic conditions (IACCs) are long-term health conditions triggered by an acute infection. These conditions encompass a wide range of illnesses, including Long COVID, dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), and Pediatric Acute-onset Neuropsychiatric Syndrome/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANS/PANDAS). They can occur after bacterial, viral, or even parasitic infections, and despite the wide variety of underlying infections, these conditions share common characteristics: they are chronic, fluid, debilitating, and often poorly understood by the medical community. Patients with IACCs frequently suffer from symptoms like chronic fatigue, cognitive impairment (brain fog), post-exertional malaise, pain, and immune dysfunction, severely affecting their quality of life.
The COVID-19 pandemic brought heightened attention to IACCs, as millions of people developed Long COVID after contracting the virus. However, many other infections — such as the bacterial infections that cause Lyme disease, Epstein-Barr Virus (EBV), and strep infections — can trigger similar long-term conditions. Despite the significant number of people affected, IACCs are often underfunded, misdiagnosed, and inadequately treated. Lack of research funding, standardized education for clinicians, and public recognition has created a crisis for patients who struggle to find adequate care. This gap in healthcare not only affects patients’ physical health but also their ability to work, attend school, and participate in everyday life.
The impact of IACCs is profound and widespread. Many patients find themselves unable to work or engage in normal activities due to the severity of their symptoms, leading to economic hardship and social isolation. For children, conditions like PANS/PANDAS can disrupt their ability to attend school or maintain friendships, while adults with Long COVID or dysautonomia may face challenges in maintaining employment or caring for their families. These conditions often go unrecognized or are misdiagnosed as psychosomatic illnesses, leaving patients without the validation or support they need. As a result, patients may cycle through different specialists, accumulating medical bills without receiving a proper diagnosis or treatment plan.
Historically, the failure to address IACCs has been evident in past pandemics and infectious outbreaks. After the 1918 influenza pandemic, many survivors developed what we now recognize as encephalitis lethargica, a post-viral syndrome similar to the conditions we see today. Post-polio syndrome, ME/CFS following EBV, and persistent Lyme disease are additional examples of IACCs that were neglected for years before gaining minimal recognition. These historical patterns highlight the importance of studying IACCs collectively, as they often share overlapping symptoms, mechanisms, and treatment approaches. By studying these conditions together, researchers can better understand the long-term impact of infections on the immune system and other body systems, paving the way for effective treatments and improved patient care. Addressing IACCs holistically is not just a matter of healthcare — it's a public health necessity.
IACC History & Urgent Need for Collaborative Action
The history of infection-associated chronic conditions (IACCs) is deeply tied to outbreaks and pandemics that have occurred over centuries. After many large-scale infections, a portion of the population often experiences long-term, debilitating symptoms that persist for years or even decades. These conditions, which can affect multiple organ systems, often go unrecognized or misunderstood by the medical community. In the early 20th century, after the 1918 influenza pandemic, many survivors developed Encephalitis Lethargica, a condition characterized by extreme fatigue, neurological dysfunction, and cognitive impairment. While little was known about the long-term effects of infections at the time, these symptoms bear a striking resemblance to what we now understand as post-viral syndromes, including those triggered by COVID-19.
As medical science advanced, more conditions tied to infections came to light, such as post-polio syndrome, which affects polio survivors with new muscle weakness and fatigue long after the initial infection. In the 1980s, ME/CFS began to gain attention as a post-viral condition following infections like Epstein-Barr Virus (EBV). Persistent Lyme disease, triggered by the bacteria that causes Lyme disease, and PANS/PANDAS, associated with streptococcal infections, added to the growing body of evidence showing that infections can lead to chronic, life-altering conditions. Despite this mounting evidence, IACCs have historically been underfunded and misunderstood, with patients often facing stigma and dismissal by healthcare providers.
Today, the COVID-19 pandemic has highlighted the urgency of addressing IACCs on a global scale. Millions of people worldwide are now grappling with Long COVID, which shares many of the same characteristics as other IACCs, including chronic fatigue, brain fog, and autonomic dysfunction. However, the response to Long COVID — and other IACCs — has been fragmented and insufficient. Despite the overwhelming number of people affected, research funding, public health initiatives, and clinical guidelines remain inadequate. The lack of coordinated action is leaving patients without proper care, while healthcare systems struggle to manage the rising tide of chronic conditions emerging in the aftermath of infections.
The urgent need for collaborative action cannot be overstated. IACCs are not isolated conditions; they share common pathways, symptoms, and mechanisms, suggesting that they should be studied collectively rather than in silos. A collaborative approach between researchers, clinicians, policymakers, and patient advocates is essential to advancing our understanding of these conditions and developing effective treatments. The ICUE (Infection Control, Understanding, and Education) report published by Solve M.E., Patient-Led Research Collaborative, C19LAP, and Dysautonomia International outlines the critical gaps in research, education, and clinical care for IACCs, calling for immediate action to bridge these gaps. Without a unified and robust response, we risk repeating the mistakes of past pandemics, where post-infectious conditions were overlooked and underfunded, leaving millions of people without the care and support they need.