MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding

MedPage Today, a news site for medical workers, published an article about ME/CFS that mentions the #MEAction campaign to increase federal research funding.
The article gathered quotes from top ME/CFS researchers Leonard Jason and Lucinda Bateman, and it summarized the findings of the recent Institute of Medicine report on ME/CFS. Physicians who know little about ME/CFS can get a quick education about the seriousness of the illness and the need for more research by reading the piece.
The article also points out the problems in how the National Institutes of Health reviews grant applications for ME/CFS, and quotes Carol Head of the Solve ME/CFS Initiative urging the NIH to create a dedicated pot of funding to research ME/CFS.
In highlighting the 30-year debate over whether ME/CFS is “real,” the piece also revisits the 1996 case of Judith Curren, an ME/CFS patient who took her own life with the assistance of Dr. Jack Kevorkian.
One tip to the MedPage Today editors: “Chronic fatigue” is a symptom, not an illness, so you might want to change your headline.
[pullquote align=”full” cite=”” link=”” color=”#E6443D” class=”” size=””] Both the IOM report and the CFSAC recommendations emphasized the dearth of federal investment in the disease.

The economic burden of ME/CFS to society — based on lost productivity and medical expenses — stands somewhere from $17 to 24 billion annually, according to the IOM.

Yet NIH spent only $5 million on the disease in fiscal year 2015. An agency report ranks funding for the condition at 231 out of 244 disease research categories, noted a patient’s open letter to Francis Collins, MD, PhD, director of the NIH, in the Washington Post.
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