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ME/CFS Takes Center Stage On First Afternoon Of Personalized Medicine World Conference

Monday 12 June 2017


From BioQuick News:


Anthony L. Komaroff
Anthony L. Komaroff

ME/Chronic Fatigue Syndrome Takes Center Stage on First Afternoon of Personalized Medicine World Conference

June 6, 2017

A very moving and informative session on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was held in the mid-afternoon of Day 1 (May 24) at the Personalized Medicine World Conference (PMWC) 2017 at Duke.

ME/CFS has been described by NIH Director Francis Collins as “the mysterious illness science has yet to unravel,” and, in this session, three compelling speakers sought to describe the disease, indicate where we are today in terms of research and knowledge of the disease, and suggest where we need to go in the future.

The three speakers were Zaher Nahle, PhD, MPA, Chief Scientific Officer and Vice President for Research at the Solve ME/CFS Initiative (SMCI) research & advocacy organization; Anthony L. Komaroff (photo), MD, Professor of Medicine, Harvard Medical School, and Senior Physician, Brigham and Women’s Hospital; and John Nicols, MBA, CEO of Codexis, a protein-engineering company. Mr. Nicols’ wife Marcy, who was in the audience, has had ME/CFS for 25 years. Dr. Komaroff has cared for and studied patients with ME/CFS for 35 years, and is a member of the SMCI Research Advisory Council. Dr. Nahle oversees the research and scientific portfolio at the SMCI that includes the peer-review grant program for external investigators, specialized biobanking, and patient registry platforms, as well as numerous medical education initiatives for patients and healthcare professionals. He also directs a specialized investment program with medical centers, government agencies, and industry partners to spark innovation and accelerate the discovery process in the ME/CFS disease space.

Dr. Nahle began the session by expressing his heartfelt gratitude to the PMWC for hosting this session on a very neglected disease. He then briefly outlined what is known about the disease today. He said that ME/CFS affects an estimated 836,000 to 2.5 million people in the United States and that the disease affects an estimated four times as many women as men. 25% of ME/CFS patients are largely bed-bound and the average age of disease onset is 33-34. Dr. Nahle added that an estimated 91% of cases are undiagnosed and almost all diagnosed cases are initially misdiagnosed multiple times. He noted that there are no FDA-approved drugs for ME/CFS and it is currently not a trackable disease by the FDA.


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