23 APRIL 2019
By David Tuller, DrPH
I’ve never spoken to Francis Collins, who heads the National Institutes of Health. He comes across as a decent, caring man, and by all accounts he is. That’s certainly how he came across in his remarks earlier this month at the NIH’s meeting on ME/CFS research.
But anyone who runs the NIH must play politics as well as direct the country’s medical research enterprise. And there are obviously differences of opinion as to whether the current limits on NIH funding for ME/CFS arise because of scientific concerns or the politics of the illness. The government claims the first. The patient/advocacy community disputes that argument, and so do scientists investigating the illness.
At the NIH meeting, Arthur Mirin, a retired mathematician whose daughter has been ill for years, said the disease burden for ME/CFS should lead to spending in the range of $200 million a year. And Cornell’s Maureen Hanson, who is an NIH grantee, made a passionate appeal from the podium for more funding.
After listening to Dr Collins’ presentation, Jennie Spotila provided her usual sharp, smart insights. As she
wrote last week on her blog,
Occupy M.E., his remarks gave her a sense of deja-vu. I am reposting Jennie’s blog below, with her permission.
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