"Eshoo Lauds NIH Push to Advance Chronic Fatigue Syndrome Research"

[Kyla]

http://eshoo.house.gov/issues/healt...to-advance-chronic-fatigue-syndrome-research/

Eshoo Lauds NIH Push to Advance Chronic Fatigue Syndrome Research
October 29th, 2015

WASHINGTON, D.C.—Congresswoman Anna G. Eshoo (D-Calif.) released the following statement regarding the announcement of new research efforts at the National Institutes of Health (NIH) to better understand Myalgic Encephalomyelitis, commonly referred to as Chronic Fatigue Syndrome (CFS). CFS is a debilitating and chronic multi-system disease characterized by extreme fatigue and has no known cause.

“Chronic Fatigue Syndrome is a mysterious illness affecting millions of Americans,” Eshoo said. “Those who suffer from the disease experience debilitating fatigue, often unable to walk, talk or even eat. I applaud the NIH for directing a research working group to explore the causes and progression of this disease in hopes of eventually developing an effective treatment.”

In a June 2015 letter, Eshoo prompted the NIH on how to bolster CFS research. Her inquiry was spurred by the circumstances of a constituent, Dr. Ronald W. Davis, whose son Whitney Dafoe suffers from the disease. Davis heads the Genome Technology Center at Stanford University and has advocated for further study into what he has called “the last major disease we don’t know anything about.”

A February 2015 Institute of Medicine report concluded CFS is an under-funded and under-researched disease affecting as many as 2.5 million Americans.

More information on the NIH announcement can be found here.

 

[Forbin]

This could be important, i.e. a member of Congress who is motivated to press for research. In addition to having Dr. Ronald Davis as a constituent, Representative Eshoo also represents the district that includes Stanford University, which means she would likely be interested in directing research funds (and jobs) there.

I don't know exactly how this works, but I believe that if you want to hold Congressional hearings on something (which would, of course, be a major step toward getting publicity and thus funding), you need a Congressperson to champion such a hearing. I'm not sure if we've had anyone else in Congress who's shown much interest in ME/cfs lately. I can only think of former Senate Majority Leader Harry Reid, whose connection was through the Whittemores and their efforts to build the WPI.

I'm just saying that Representative Eshoo might be an important asset to the ME community in her ability to raise awareness in Congress.

 

[sdmcvicar]

Another piece of the coverage here, with Francis Collins indicating that NIH will boost funding from the $5 million annually, though it doesn't say by how much:

http://www.theatlantic.com/health/a...for-chronic-fatigue-syndrome-research/413008/