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The NIH Is Thwarting Research On A Poorly Understood Yet Serious Condition

Tuesday 29 January 2019


From STAT:


MEAction demonstration
A demonstration by MEAction, a myalgic encephalomyelitis
advocacy group, in Washington, D.C.
(Photo: MEAction)

The NIH is thwarting research on a poorly understood yet serious condition

By Jennifer Spotila
January 10, 2019
© 2019 STAT

When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and that I would instead become an advocate for myself and others with ME (sometimes misleadingly called chronic fatigue syndrome, and referred to as ME/CFS by U.S. federal agencies).

An estimated 1 million Americans with this condition have been living for decades in the crisis mode of disability and lack of treatment. We have repeatedly pressed the National Institutes of Health to address the problem by increasing research funding; one ME/CFS organization even met with NIH Director Francis Collins in December 2018 to make that point. The response from the NIH is always the same: Researchers should submit more high-quality grant applications.

On the surface, this sounds reasonable. From documents a colleague and I obtained through a Freedom of Information Act request, I calculated that between 2011 and 2016 the NIH funded 25 percent of ME/CFS grant applications, a higher acceptance rate than the average for all grants. It seems obvious, then, that more applications would yield more funding.

But it’s not that simple: Despite growing interest in ME/CFS, NIH grant applications to study the disease have dwindled since 2015.

Why? The NIH has erected an obstacle course for those wanting to do research on this disease. I see at least five obstacles that scientists must navigate on the path to funding.


Full article…



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