“When I was very sick, I really did lie in my bed and wish that someday a group of scientists might come together to take interest in the plight of all of us who live with infection-associated illness. There are millions of us in this country.”

So began acclaimed writer and chronic illness advocate Meghan O’Rourke, when she was in fact addressing a group of scientists who have indeed taken an interest in the conundrum of people who get sick–and stay sick, no matter what they do.

She was an introductory speaker at a two-day workshop on long-haul diseases put on by the National Academies of Sciences, Engineering, and Medicine in Washington DC.

The topic of the conference: Toward a common research agenda in infection-associated chronic illness. The event brought together researchers already working on long COVID, persistent Lyme disease, multiple sclerosis and ME/CFS—to figure out how they might share information and join forces to move the needle forward on solving this scourge that afflicts so many people.

O’Rourke, the author of the “The Invisible Kingdom: Reimagining Chronic Illness” (which by the way, was nominated for the National Book Award), spoke eloquently about her personal experience with both chronic Lyme and long COVID—and how important it is for scientists to listen to patients and find ways to help them get well.

There were fascinating and encouraging presentations on the first day of the conference. As I write this, the second day is still to come. I plan to write more about everything that transpired at this groundbreaking event. Stay tuned.

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