The Tragic Neglect of CFS

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The Tragic Neglect of Chronic Fatigue Syndrome
It leaves people bed-bound and drives some to suicide, but there's little research money devoted to the disease. Now, change is coming, thanks to the patients themselves.

This past July, Brian Vastag, a former science reporter, placed an op-ed with his former employer, the Washington Post. It was an open letter to the National Institutes of Health director Francis Collins, a man Vastag had formerly used as a source on his beat.

“I’ve been felled by the most forlorn of orphan illnesses,” Vastag wrote. “At 43, my productive life may well be over.”

There was no cure for his disease, known by some as chronic fatigue syndrome, Vastag wrote, and little NIH funding available to search for one. Would Collins step up and change that?

“As the leader of our nation’s medical research enterprise, you have a decision to make,” he wrote. “Do you want the NIH to be part of these solutions, or will the nation’s medical research agency continue to be part of the problem?”

For a man who had once churned out breaking news stories in minutes, it had taken four days, with frequent breaks, to compose the 1600-word piece.


http://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/
 

candi P

Member
Hello Everyone, I am including a link to a change.org petition to increase funding for this illness at the NIH. A young woman in Louisiana started it and it is now over 24,000 signatures which automatically sends an email to the head of the NIH and Francis Collins. There is real momentum here and at the right time for the ME/CFS awareness month. Please sign and forward to anyone and everyone who may be interested.

https://www.change.org/p/increase-f...utm_source=share_petition&utm_medium=copylink
 

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