Last year, NIH said it was undertaking a process to identify a research case definition for ME/CFS, but individuals like me were unable to get any additional information about what NIH intended. Now additional information has been made public in a February 27, 2013 letter from Assistant Secretary for Health Dr. Howard Koh to Kim McCleary of the CFIDS Association (
pdf link). I’ve done some research, and I believe we need to monitor this case definition process closely.
Case definition has been the 600-pound gorilla in the room every time ME/CFS is discussed. There are five definitions currently in use (Oxford, Fukuda, Carruthers 2003, Carruthers 2011, and Jason Pediatric) and there is no consensus among researchers and policymakers on which one is the best.
(This is such a complex issue, it deserves its own post.) NIH, as the largest funding source for biomedical research, can wield great influence over the definitions used by researchers. While it was a positive step to say NIH would undertake a research definition effort, there was no transparency or information available to us until now....
We may not be able to participate in this process until the public meeting, but I hope advocates will join me in monitoring how this evolves. I also hope NIH will be forthcoming about each step in the process. In my experience, the engagement between advocates and the government is more positive and productive when the advocates have access to accurate information. We have a lot to learn about this methodology, and we should adequately prepare to have the best possible influence on the process.
