ME/CFS State of the Knowledge Workshop Resources

NIH Director Francis Collins and Vivian Pinn, MD

The National Institutes of Health (NIH) hosted the ME/CFS State of the Knowledge Workshop on April 7-8, 2011. The workshop brought together subject matter experts to discuss multiple aspects of ME/CFS, including epidemiology, etiology, pathophysiology, diagnosis and treatment. The workshop panelists helped identify gaps in knowledge and opportunities for advancing biomedical research. NIH Director Francis Collins addressed the meeting and several other top Department of Health and Human Services and NIH staff attended all or part of the workshop. Secretary Kathleen Sebelius expressed her support in a letter sent to workshop participants.

The two-day meeting agenda provides the presentation topics and speakers’ names. The meeting was webcast live and the recordings have been archived for on-demand viewing. A summary of the workshop presentations was prepared by Jennie M. Spotila, J.D.

The Association’s scientific director, Suzanne D. Vernon, PhD, was a member of the workshop steering committee and she was asked by organizers to provide a summary at the end of the Workshop. View her slides here.

Kim McCleary, the Association’s CEO, was invited to briefly address communicating with research stakeholders during a Day 2 session on Communications. View her slides here.

Amy Dockser Marcus of the Wall Street Journal attended the first day of the Workshop and she posted this report on the WSJ Health Blog, “At NIH Conference on CFS, XMRV Debate Heats Up.”

Dennis Mangan, PhD

NIH plans to make a full report available; however, its compilation will take several weeks. There is a short summary posted on the NIH website.

The Workshop was planned by the Trans-NIH ME/CFS Working Group under the leadership of Dennis Mangan, PhD, and a steering committee comprised of the following volunteers appointed by NIH: Pat Fero; Ken Friedman, PhD; Lenny Jason, PhD; Nancy Klimas, MD; Mary Schweitzer, PhD; and Suzanne Vernon, PhD.

Sponsored by
The Office of Research on Women's Health,
National Institutes of Health
In collaboration with
The Trans-NIH ME/CFS Research Working Group

July 8, 2011

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