A Wing, A Prayer And Vicky Whittemore: The NIH And Chronic Fatigue Syndrome In 2018

 

Cort_Johnson

 

By Cort Johnson in Health Rising.

 

“I think some people are angry for good reason.  This disease hasn’t gotten enough attention.” Vicky Whittemore

 

My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in and were escorted up to her office.  It turned out that she was in a bit of a pickle. Someone in charge of buildings had decided that her office – and presumably the other offices in the building – didn’t meet code.  The office, which looked entirely normal to me, was a bit too large.  Either they were going to have to cut it in half, she joked, which would make it too small, or she might have to move.

Vicky Whittemore is the National Institute of Neurological Disorders and Stroke (NINDS) liaison to the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group. Basically she’s our go-to person for chronic fatigue syndrome (ME/CFS) at the NIH. She gets it about ME/CFS and she’s committed to our success. This isn’t the first time, either inside or outside the NIH, she’s advocated for under-served diseases.

A PhD and the chief scientific officer at a non-profit for a rare genetic disease that her nephew has, she was first invited to serve on a NINDS council. The NIH apparently liked what they saw and recruited her to be the Epilepsy Program Director. She inherited two small ME/CFS and/or POTS grants and was told, “By the way, this is a kind of challenging patient community”, but was assured that her non-profit experience would serve her well.

 

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