A Candid Discussion with NIH Director Francis Collins

carol-zaher-with-francis-collinsEarlier this week at FasterCures’ Partnering for Cures conference in New York, Solve ME/CFS Initiative President Carol Head and VP of Research and Scientific Programs Dr. Zaher Nahle met with Director Francis Collins of the National Institutes of Health (NIH) for a private conversation regarding ME/CFS.

The trio discussed efforts at the NIH to strengthen research on, understanding of, interest in, and clinical studies for ME/CFS. Given the upcoming government transition, the meeting’s focus was on how to maintain progress made so far after the transition and improve outcomes for ME/CFS. Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.

Dr. Collins also addressed the recent lecture conducted by the controversial Dr. Shorter and acknowledged the strong response of the patient community. Dr. Collins assured Carol and Zaher that the incident would not impede progress on the disease and committed to ensuring that the NIH would continue to use science and research to guide its decision-making process. Dr. Collins then strongly urged SMCI to continue building bridges in order to bring the ME/CFS community together.

SMCI President Carol Head said of the meeting, “It’s very rare for any disease to receive such a high-level meeting—and we recognize that it indicates Dr. Collins’ commitment to ME/CFS. And at the same time, we cannot predict what will occur if a new NIH director is appointed.”