Seeking a cure for long-Lyme, long-COVID, and other persistent diseases
Why do some people get sick from an infection and then get well—while others with the same infection suffer for months or years with severely debilitating symptoms?
It’s a huge question, not only for the Lyme disease community, but also for people with long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, and multiple sclerosis.
All fall into the category of “infection-associated chronic illness,” and nobody really knows why it happens.
Such “long-haul” illnesses not only have devastating consequences for individual patients and their families—they also impact society at large. For example, it’s estimated that long COVID is keeping some 1.6 million full-time workers out of the US labor market. That has ripple effects throughout the country’s entire economy.
Now, the National Academies of Sciences, Engineering, and Medicine (NASEM) is looking into the matter.
“Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors,” has been scheduled for June 29-30 in Washington D.C. The event will be hybrid—available both in person and via zoom. Registration information here.
The idea is to bring together researchers from these different long-haul diseases so they can collaborate. Cross-fertilization, if you will. By figuring out what these conditions have in common and sharing what they’ve learned, participants hope to speed up the development of new treatments to restore these chronically ill people to health.
The following video from NASEM features Lorraine Johnson of LymeDisease.org, Hannah Davis of the Patient-led Research Collaborative, and MS advocate Seth Morgan, talking about the importance of this upcoming event.
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 firstname.lastname@example.org.