In June 2023, the National Academies of Science, Engineering, and Medicine (NASEM) held a game-changing workshop in Washington DC that introduced the term “infection-associated chronic illness (IACI)” to the research world.

One goal of that event was to encourage medical research to look at commonalities between such conditions as long COVID, persistent Lyme disease, multiple sclerosis and ME/CFS.

A follow up event on July 11 will focus specifically on Lyme disease. It introduces another new term–“Lyme IACI.”

According to the organizers, Lyme IACI is meant to encompass the variety of terms often used to describe people who get Lyme and then stay sick. These include such phrases as post-treatment Lyme disease syndrome, persistent Lyme disease, long Lyme, and other complex, chronic cases of Lyme disease.

What’s the goal?

Here’s how the NASEM website describes the purpose of the workshop:

An ad hoc committee under the auspices of the National Academies of Sciences, Engineering, and Medicine will conduct a study of the evidence base for Lyme infection-associated chronic illnesses (Lyme IACI) treatment. Specifically, the committee will:

• Review current knowledge and gaps regarding research into the etiology of Lyme IACI and clinical trials for its treatment;
• Examine what is known regarding co-infection with multiple tickborne pathogens, and consider implications for research and development of Lyme IACI diagnostics and treatment;
• Consider how emerging lessons learned from long COVID and other infection-associated chronic conditions may be applied to advancing Lyme IACI treatment; 
• Explore advances in medicine and biotechnology that may hold promise for accelerating Lyme IACI treatment; and
• Identify priorities for additional research to advance Lyme IACI diagnostics and treatment.

The study is intended to focus on diagnostics and treatment of Lyme IACI symptoms and not to improve diagnostics and treatment for acute Lyme disease. As such, the prevention of Lyme disease transmission or onset, including development and use of vaccines or other prophylactic drugs, is also outside the scope of this study. Based on its review of the literature and input from a public workshop, the committee will develop a report with its findings, conclusions, and recommendations for advancing Lyme IACI treatment.

Workshop presenters include academic researchers, government officials, and a variety of stakeholders. Representing the Lyme patient community will be LymeDisease.org’s CEO, Lorraine Johnson, and Wendy Adams of the Bay Area Lyme Foundation.

You can register to attend the workshop in person or to watch it online. Details here.

Read my recap of the June 2023 event: “Words matter.” A new way of thinking about long-haul diseases.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.