Response to With Significant Advances But Little Money, Chronic Fatigue Syndrome Research Tries Crowdfunding:
ME/CFS blogger Cort Johnson reported via twitter that “Lipkin got fecal samples, would like to do throat samples, PBMC’s – reviews of his grant proposal to do gut work on ME/CFS were horrendous though, very difficult to get funding, one reviewer of his grant proposal referred to ‘psychogenic illness’ in ME/CFS”. For grant reviewers to be referring to ‘psychogenic illness’ in ME/CFS is absolutely unacceptable and ridiculous and is a perfect example of why so little biomedical ME/CFS research gets funded. The official Govt. response has historically been that few high quality grant applications are made, but the truth is that patients and researchers have learned from bitter experience that the US Government has little interest in giving ME/CFS research the recognition and funding it so desperately needs and deserves. ME/CFS needs to immediately be moved from the DHHS Office of Research on Women’s Health (ORWH) and put back under the auspices of the NIH National Institute of Allergy and Infectious Diseases (NIAID), then a standing grant review panel composed of biomedical researchers with expertise in the appropriate fields needs to be appointed to review grant applications. Right now there is no ‘home’ for ME/CFS, but rather ME/CFS is ‘overseen’ by almost a half-dozen federal agencies, with the end result being that there is absolutely no accountability and no responsibility by any individual agency.