Journal of IiMER Volume 10 Issue 1 June 2016 By Zaher Nahle PhD, MPA, Vice President for Research and Scientific Programs Solve ME/CFS Initiative – Los Angeles, California Within the spectrum of human diseases, ME/CFS is “…one of the most challenging.” That is how the Director of the National Institutes of Health (NIH), Dr. Francis S. Collins, described this disease in a press release in late 2015 when he announced efforts to bolster ME/CFS research at the NIH. Collins, as the head of a $32 billion research agency investigating hundreds of complex diseases, has a unique perspective on medical challenges worldwide, which makes his characterization of ME/CFS especially telling. But why is this disease so challenging, “most challenging” in fact? The answer is not simple yet the challenges can be classified in two categories. “Humanmade” challenges resulting from inept policies and a lack of leadership and “nature-made” challenges stemming from the complex, multifactorial nature of the disease itself: First, solving medical mysteries historically, particularly stubborn ones, has been proportional to investment in clinical investigations and basic research. Lessons from polio to HIV have taught us that repeatedly. It is, therefore, consequential that the meager research spending on ME/CFS to date continues to sustain, if not fuel, the challenging attributes of this disease. Second, there is no US national strategy yet to tackle the disease in a focused, comprehensive way. Such strategy would create an aggregate mass of scientists, including the necessary infrastructure, for studying this incredibly stimulating area of science. Elements of such strategy would include: (i) Making ME/CFS a viable career path for investigators by funding federal grant opportunities in this area; (ii) Supporting clinical and research mentorship programs in ME/CFS; (iii) Developing centers for excellence dedicated to ME/CFS clinical and basic research; (iv) Fast tracking FDA approvals of promising drug candidates; and (iv) Redefining the illness as one of the “most challenging” diseases in medical school curricula and other medical education platforms, including those associated with influential federal agencies such as the CDC. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 20 of 77
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