When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for Scientific Review at NIH, claimed that there aren’t many people interested in researching ME/CFS and that the NIH hasn’t received meritorious applications.
Janet Dafoe, wife of Stanford geneticist Ron Davis and mother to Whitney Dafoe, a very severely ill ME patient, had a succinct reply to this claim: “This statement from NIH is just insulting to all the good researchers geared up to do research and to all the suffering millions of US citizens who need answers and treatment!” As she explained, “Ronald W Davis, renowned Stanford researcher, submitted two applications for grants with co-investigators Mike Snyder, Chair of Genetics Department and Mark Davis, Chair of Immunology Department, and Ron Thompkins, Harvard PhD, et. al, and was told by NIH not to even submit the full grant proposal because they wouldn’t fund it. Wouldn’t even review it!”
Preeminent researchers, including Ian Lipkin and Ron Davis, have been rejected by NIH reviewers every time they apply to study ME/CFS, yet are able to get ample funding for many other areas of research.
Here is Cheryl Kitt at the August 18, 2015 CFSAC meeting:
We have transcribed her presentation for anyone who find it easier to read than watch videos:
“We need many more people interested in the problem and applying for research dollars. As Vicky said, we fund the best science. If applications come in… in fact ME/CFS is a very high priority for us. If there were meritorious applications to fund we would fund them. If Nancy were here she will tell you the challenge in peer review of these applications— I have to tell you they’re all not that great. You wouldn’t want us to fund those applications. We want to fund the best that will benefit you.
And so that’s the challenge for us. We get very few per year. Just throwing money out there will not get people to …sometimes they suddenly get interested, but they have to be poised and ready to go with a good idea and a good methodology to do it. It’s not that we won’t fund it, we would if there were applications there — and meritorious, that pass peer review. I hope that helps you understand.”