Bias, Lack of Commitment
By Craig Maupin at www://cfidsreport.com
A recent report submitted to the CFSAC asserts that there is "no evidence of a NIH commitment to biological research" for chronic fatigue syndrome. The report, authored by long-time advocate Pat Fero, states that successful grant proposals for CFS collapsed from a funding rate of 24% to 5%. The report focuses the last ten years and on grants for "which CFS is the primary focus".
Fero based her report on Freedom of Information Act requests that returned the numbers of grants submitted to the CFS Special Emphasis Panel. In 2000, CFS was moved out of the NIAID to the ORWH (Office of Research on Women's Health), under an NIH belief there was no " there is still no data that suggests an infectious etiology for CFS." Since then, funding has languished and decreased significantly. CFS is now one of the lowest prioritized illnesses at the NIH.
Dr. Eleanor Hanna, an expert in alcoholism, was appointed to head the CFS research efforts in 2000. Hanna has maintained that the CFS NIH Working Group developed a very strict criteria for what CFS grants proposals were acceptable: "It is unlikely that you would get any significantly different kinds of research than what is already out there, unless you attracted a new group. [You do this] by doing the things like the conferences and planning conference initiatives from those newer ideas."
However, Fero believes an internal bias against biomedical research for CFS produced a chilling effect on funding. "I have heard once excuse after another [for grant denials]: poor grant writing, poor idea, old idea, or no innovation." Fero believes an NIH desire to promote a perception and stress-based model for CFS, as well as lack of institutional resolve or internal clinical understanding of CFS, produced a devastating and chilling effect on funding: "The leadership at the NIH decided that investigations of fatigue, pain mechanisms, and sleep problems in the general populations would provide keys to understanding CFS". She points to a 2003 conference that she says barred biomedical research perspectives for CFS.
The ten years that Fero examined was a prosperous time for the NIH. In that time, the NIH budget doubled, while NIH funding for CFS was cut in half. Fero believes a new GAO investigation is needed to determine the causes of the funding collapse for CFS research. She believes internal agency attitudes toward CFS are vital to understanding the issue.