Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to bed-bound and at the edge of starvation due to ME/CFS.
Davis has built a world-class research team to study ME/CFS, including co-investigators from top institutions including Harvard and Stanford. Despite his team’s track record and expertise, their proposals to study ME/CFS can’t even get past the pre-proposal stage at NIH and were rejected twice without reaching the peer review stage.
As we mentioned in our post yesterday an NIH representative told CFSAC attendees the NIH has not been receiving quality ME/CFS research applications despite receiving applications from multiple researchers who have had no problem winning large NIH grants throughout their careers as long as they aren’t for ME/CFS research.
Ron Davis and his team, which includes Mike Snyder, Chair of Genetics at the Department at Stanford; Mark Davis, Chair of the Immunology Department; Ronald Tompkins and Wenzhong Xiao, professors of Surgery at Harvard Medical School; Steve Fodor; and Andreas Kogelnik of the Open Medicine Institute, submitted two pre-applications in March for grant proposals to study biomarkers in ME/CFS, which would look in-depth at severe patients.
Both proposals were about finding Biomarker(s) for diagnosing ME/CFS using biochemical test that are accurate, sensitive, inexpensive, readily available and distinguished from all other diseases. This was one of the highest priorities of the IOM and P2P reports. Over the past several decades I have developed many of the technologies used for modern diagnostic testing.
One of the comments in the rejection letter was so mystifying that Ron replied, “This comment made me wonder if they had even read the proposal.” Ron wrote a detailed “response to reasons NIH refused to accept grant applications” and shared it with senior NIH officials. He and his wife Janet Dafoe have asked that we share his in-depth, thorough response so that NIH can’t continue to claim that they are evaluating ME/CFS research proposals on their merits.
The rejection from NIH and Davis’s response is a rare look inside the grant application process. Almost anyone who is interested in ME/CFS research should find this document eye-opening. We are very appreciative that Ron Davis and Janet Dafoe have shared this document with us. Our community has done an incredible job crowdfunding research, but raising research funds should not be put solely on the backs of struggling patients. It is time NIH steps up and starts funding ME/CFS research at a level proportionate to the disease’s severity, prevalence and impact.
As Davis concludes in his response to NIH’s refusal:
The IOM and P2P reports both state the urgent need for research support. This research proposal addresses many of the critical needs specified in these reports. This should be viewed as an opportunity for NIH to show leadership and quickly initiate research activity.
#MEAction is working on a lobbying campaign to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health, and move the research program to NINDS. Please read Help us get ME into the 21st Century Cures Act if you would like to learn more about this effort.
You can learn more about Ron Davis’s work and his efforts to fund his research: