Speaker Renee R. Taylor, Ph.D. said repeatedly during the #NIH #ME #CFS #P2P workshop that this disease needs a study designed like the Framingham Study. If youre not familiar with it heres a snippet about it. In 1948, FHS scientists and participants embarked on an ambitious project to identify risk factors for heart disease. Today, the study remains a world-class epicenter for cutting-edge heart, brain, bone, and sleep research. This was large (over 5,000 men), longitudinal (successive studies continued to investigate the children and grand children of the original subjects). Others at the workshop, including patients reiterated the CFSAC recommendation to develop and utilize some form of big date, some mechanism to capture and house all information and samples relative to this disease, to be accessible to all researchers internationally. If you remember, CFSAC recommended using NDAR as a template, but the #NIH rejected it at the time. With proper disease guidelines instructing the sole use of CCC or ICC, and implementation of the above 2 ideas, experts could likely uncover the etiology, understand the phenotypes, genotypes, conduct proper and rapid diagnosis with approved testing, and wed be on the road to approving treatments.
Posted on: Sat, 13 Dec 2014 16:46:42 +0000
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