Journal of IiMER Volume 10 Issue 1 concepts and biomarkers. This program is named the Ramsay Research Grant Award Program in honor of the Myalgic Encephalomyelitis pioneer Dr. A. Melvin Ramsay, who was the recognized authority in ME from 1955 until his death in 1990. His sound descriptions of the disease have stood the test of time. This grant program part of our organization’s overall research strategy to encourage participatory investigations, accelerate new discoveries and reduce barriers for entry into the challenging yet rewarding field of ME/CFS. The Ramsay program has three main objectives: • INVEST in original ideas that will clarify the nature, progression and root causes of the disease. • CREATE environments through these pilot grants to help awardees generate preliminary data and compete for long-term federal grants with the hope of retaining these researchers in the ME/CFS field. • FACILITATE collaboration among individuals committed to solving this challenging medical issue through our organization’s network. II. Two, we engage with government leaders and policy makers. This engagement in advocacy is driven by two fundamental beliefs: one, that it is the responsibility of the government to find cures for the up to 2.5 million ME/CFS patients in the US alone and not the other way around; and two, that major breakthroughs will be accelerated June 2016 with significant funding from the federal government, most importantly NIH and CDC. These discussions with key government officials, which we consider essential to our core mission, establish a healthy partnership with national and public health organizations while simultaneously maintaining the pressure aimed at finding real solutions to our disease. III. Three, we are taking the lead in developing a national registry that can clarify the natural history of the disease. This is done in partnership with Genetic Alliance PEER program and the Robert Wood Johnson Foundation, as well as the ME/CFS community. Such initiative will also facilitate performing longitudinal and cross sectional studies, informing clinical trial design, sharing information with organizations and researchers for educational and research purposes, collecting demographic, epidemiological, genetic, social sciences, health disparity, comorbidity and treatment outcome data, conducting relevant and targeted surveys and creating an information hub that will benefit the ME/CFS community as a whole. IV. Four, we maintain vigilance against misleading information and poorly designed studies and disseminate information through our multi-communication channels (e.g., e-newsletter, print publication, social media) to refute suspect science and keep the community up to date on current Invest in ME (Charity Nr. 1114035) www.investinme.org Page 22 of 77

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