Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller



By David Tuller, DrPH.

Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged the agency to develop “bold leadership for ME,” “disease-specific, multi-year Request for Application (RFAs) and investigator-initiated funding opportunities,” and “a strategic plan: comprehensive, fully-funded, cross-Institute and outcome-driven.”

From #MEAction’s perspective, the outcome of the meeting left much to be desired. According to the group’s account, “NIH leadership is not yet ready to significantly accelerate NIH’s approach and commitment to ME because they feel the science is not ready, and that the field lacks the needed researchers and high-quality grant applications.”


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