National Academies take on thorny issue of “long-haul” diseases

Feb. 17, 2023

The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that study complex challenges facing our country and give expert guidance on how to solve them.

NASEM has a reputation for providing independent, objective and nonpartisan advice with high standards of scientific and technical quality.

Now, the Academies are taking on the thorny issue of “long-haul” diseases, focusing specifically on long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, persistent Lyme disease, and multiple sclerosis.

In June, NASEM will hold a workshop called “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors.”

As CEO Lorraine Johnson points out, “these conditions are frequently neglected in research and medicine. As a result, patients who become profoundly ill are unable to receive treatment. This workshop brings together patients, clinicians, and researchers to build a collaborative effort among these communities to improve care.”

Johnson, Principal Investigator of the MyLymeData research project, is one of eight subject matter experts serving on the planning committee for the June event. Also on the panel is Dr. Brian Fallon, director of Columbia University’s Lyme & Tick-Borne Diseases Research Center. Click here to learn about other members of the group.

Research and knowledge gaps

According to the NASEM website, workshop discussions will consider the latest research and knowledge gaps in the following:

  1. Overlapping clinical and biological factors underlying infection-associated chronic illnesses.
  2. Current practice and novel technologies to develop urgently needed diagnostic tests for different stages of illness and/or the potential underlying infectious agent.
  3. Identification of therapeutic targets and strategies to prevent or impede chronic illness progression.
  4. Coordination and collaboration among various stakeholders and practitioners that will increase research and enhance care across different patient populations.

The two-day event will be held June 29 and 30 in Washington DC. You can also attend virtually. Click here for registration information.

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

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