Journal of IiMER has achieved international recognition for her research and clinical efforts in multi-symptom disorders, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI), Fibromyalgia, and other Neuro Immune Disorders. She is immediate past president of the International Association for CFS and ME (IACFS/ME), a professional organization of clinicians and investigators, and is also a member of the VA Research Advisory Committee for GWI, the NIH P2P CFS Committee, and the Institute of Medicine ME/CFS Review Panel. Dr. Klimas has advised three Secretaries of Health and Human Services, including Kathleen Sabelius, during her repeated service on the Health and Human Services CFS Advisory Committee. Professor Klimas has been featured on Good Morning America, in USA Today and the New York Times. Abstract: The Gene Study – a Patient Science Partnership Goes Viral Nancy Klimas, MD 1,2 , Kelly Gaunt Hilton, OMS-III 1 , Kristina Gemayel, OMS-IV1 ,Melanie Perez3 , Rajeev Jaundoo3, Travis Craddock1, Lubov Nathanson PhD1 1Nova Southeastern University College of Osteopathic Medicine, Ft Lauderdale Florida 2 Miami Veterans Medical Center, Miami FL 3 Nova Southeastern University Hamlos College of Natural Sciences and Oceanography The ME/CFS Gene study is truly unique. Two medical students were challenged to create a study using a social media based platform to ask one of the biggest unanswered questions of our time: what are the genetic underpinnings that put a person at risk for ME/CFS? Why would one person recover from a common infection and the next spin into a chronic disabling illness? Does the genetic signature give us new clues to predict therapies? The challenge was a big one – it takes several thousand volunteers and an expensive genetic assay, then complex analysis to begin to answer questions of genetic risk. The budgets of these studies exceed NIH and foundation caps for funding, and access to that many subjects simply has not happened yet. The study group partnered with advocacy groups across the country and created a novel design: ask patients to donate data not dollars. Use social networking to reach out to the community and ask for access to data from genetic studies that are becoming increasingly common in our society: genomic ancestry platforms. Millions of people have taken advantage of the ancestry platforms at their own expense to have studies of genetic signatures completed. We are asking ME/CFS patients to donate their data to launch the gene study. Using 23 and Me or Ancestry.com data sets owned by the volunteers, we asked that they log on to our study site, review and sign the informed consent, then take the surveys that ask about their illness, its severity, the way it started etc. At the end they upload the raw data sets from their ancestry studies. More student power is then employed to align the data in spread sheets, then check its quality. Students working with Dr. Lubov Nathanson the gene targets are reviewed for function and likelihood that they would indeed impact important pathways that effect cell function. Then we start with analysis – at this point we have enough data to query specific pathways, asking questions about specific genes, but we do not have enough data to ask the larger questions, find the surprises locked in the gene set that could lead to the “eureka” moments. We need the effort to go viral to be truly successful, and we need your help. We have 800 volunteers so www.investinme.org Page 70 of 82
71 Publizr Home