Lyme disease is typically treated with antibiotics, and most people experience a resolution of symptoms. However, the disease can become chronic and debilitating for some individuals. This condition has been named Lyme infection-associated chronic illness (IACI). Approximately 10% to 20% of patients go on to experience prolonged symptoms—often including fatigue, pain, and cognitive impairment—that can last for years and significantly limit function and quality of life.¹
A new report, Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses, from the National Academies of Sciences, Engineering, and Medicine, aims to prioritize research into treatments that improve function and quality of life for people living with IACI.¹
“There is an urgent need to identify and develop safe and effective treatments for Lyme IACI that can restore functionality and quality of life, and it is possible for that work to start now,” Kent Kester, chair of the committee that wrote the report and executive director of research and development at the Coalition for Epidemic Preparedness Innovations, said in a statement. “People living with this condition deserve to have information that allows them to both make informed decisions about their own health and to have safe and effective treatments available to them.”1
The report highlights an unrealized opportunity for researchers, clinicians, and people living with other infection-associated chronic illnesses—such as myalgic encephalomyelitis/chronic fatigue syndrome or Long COVID—to share knowledge to better understand common mechanistic pathways or treatments that may be applicable across these diseases. Pooling research efforts to examine the pathogenesis and treatment of persistent symptoms could streamline discovery and maximize the impact of funding.
The report recommends that the department of Health and Human Services develop an integrated strategic plan for research on infection-associated chronic illnesses to facilitate collaboration across different disease research efforts. This plan should improve understanding of commonalities across diseases and help advance effective interventions.
Report Recommendations
•The US Department of Health and Human Services should develop a consensus research definition to facilitate coordination in research and ensure the broad range of people living with the condition are considered.
•The National Institutes of Health and the Centers for Disease Control and Prevention should define a set of standard research tools and metrics—such as standard ways to measure the outcomes of Lyme IACI treatments.
•Funders and managers of biobanks and patient registries — which the report says are important but underutilized in research — should ensure that best practices are in place to further optimize the sustainability, accessibility, and quality of these samples and data to promote their utility.
•Research funders should develop and maintain a research data coordinating center to facilitate sharing of resources and knowledge across programs that are conducting Lyme IACI clinical research. Critically, this should incorporate input from people living with Lyme IACI.1
According to the National Academies, they convened a committee of experts to assess the evidence for disease mechanisms, diagnoses, and treatments of Lyme IACI, and to chart a pathway for the development of new treatments. Contributors to the report include the National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Global Health; Board on Health Sciences Policy; and the Committee on the Evidence Base for Lyme Infection-Associated Chronic Illnesses Treatment.
The report again emphasizes the potential for cross-condition collaboration among researchers and patients facing chronic illnesses like ME/CFS or long COVID, aiming to identify shared biological mechanisms and therapeutic approaches. By coordinating research and funding, the impact of scientific discovery could be enhanced.
Lyme Disease Burden
Named after the town of Lyme, Connecticut, where a small cluster of cases in both adults and children occurred in 1975, the disease had existed for years before being officially identified. Today, several factors are contributing to Lyme disease becoming the most common vector-borne disease in the US.
In 2023, more than 89,000 cases of Lyme disease were reported to the Centers for Disease Control and Prevention (CDC) by state health departments and the District of Columbia. However, these numbers come from routine national surveillance and may underrepresent the actual burden. The CDC estimates that approximately 476,000 people in the US are diagnosed with Lyme disease each year using other data collection methods.
To view the report, interested parties can go here.
References
1. Research Funders Should Prioritize Finding Treatments to Ease Symptoms of Chronic Illnesses Associated with Lyme Disease, Not Wait for Certainty on Cause, Says New Report. National Academies of Sciences, Engineering, and Medicine. May 8, 2025. Accessed May 14, 2025.
https://www.nationalacademies.org/news/2025/05/research-funders-should-prioritize-finding-treatments-to-ease-symptoms-of-chronic-illnesses-associated-with-lyme-disease-not-wait-for-certainty-on-cause-says-new-report
2. Lyme Disease Surveillance and Data. CDC March 13, 2025 Accessed May 14, 2025.
https://www.cdc.gov/lyme/data-research/facts-stats/index.html
