NIH Takes On Solving Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

NIH Takes On Solving Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

New Funding and Renewed Hope for ME/CFS Patients in the United States

TRAVERSE CITY, Mich. – March 9, 2016 – PANDORAorg.net announced today its full commitment to collaboration with the National Institutes of Health (NIH) to advance research for ME/CFS. NIH held an open call with the ME/CFS community to discuss their steps to bolster research. This call was the first major public engagement since Dr. Francis Collins, Director of NIH, stated in October that this would be a significant priority for the agency.

Lori Chapo-Kroger, president of PandoraOrg.net, said, “The reason for our strong statement of collaboration is that the entire research and medical communities should standup, take notice and engage with the NIH as they are swinging the door wide open for new research and important advancements in this very complex and serious disease.”

Dr. Collins opened the call to the ME/CFS community stating their goal for ME/CFS was to better characterize the disease, improve diagnosis and find treatment. The program would include both intramural and extramural studies, with one intramural study already underway.

Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS), noted that this disease has proven to be a difficult problem. The agency plans to seek answers and invite universities and companies to participate. Dr. Koroshetz, in response to a question by a patient, stated that therapeutics were a goal and that NIH has met with the makers of Ampligen, the only drug in the pipeline.

Dr. Vicki Whittemore who heads up the Trans-NIH MECFS Research Working Group said they would focus on key issues such as biomarkers, cause and mechanisms, post exertion malaise (PEM) and brain fog.

“This community has waited decades; the lack of science left more than 1 million Americans to suffer,” said Chapo-Kroger. “The fact that NIH has engaged experts from 23 Institutes within NIH gives the patients real hope.”

PandoraOrg.net is dedicated to finding treatments and cures for ME/CFS through funding research and nationwide advocacy, while empowering people with ME/CFS and their families to live fuller lives by providing compassionate care and support.

# # #