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

Lyme disease, caused by a bacterium spread through tick bites, affects hundreds of thousands of people in the U.S. every year. Many recover after being treated with standard antibiotics, but approximately 10% to 20% go on to experience prolonged symptoms - which often include fatigue, pain, and cognitive impairment - sometimes for years, limiting function and quality of life.

There are no available treatments that have been validated as safe and effective for curing or managing symptoms for those living with Lyme IACI, the report says. Without validated treatments available for the disease's long-term debilitating symptoms, people living with these symptoms may have to make decisions about their health without the benefit of robust evidence, or turn to untested interventions, which may carry a risk of unknown harms.

While clinicians and researchers have worked to better understand and treat Lyme IACI for decades, research on treatment has received insufficient attention and investment, in part due to a lack of alignment on the priorities for Lyme IACI-related research. To date, well-designed randomized trials that allow researchers to draw conclusions about the safety and effectiveness of treatments have focused nearly exclusively on antibiotic therapies. However, the report indicates, this focus on one type of intervention comes at the cost of exploring other treatment approaches that could address Lyme IACI, especially as disease mechanisms remain unknown.

"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," said Kent Kester, chair of the committee that wrote the report and executive director of research and development at the Coalition for Epidemic Preparedness Innovations. "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."