The Open Medicine Institute Initiates Innovative ME/CFS Research Funded by Major Grants from the Edward P. Evans Foundation and the Neuro-Immune Disease Alliance (NIDA)
Over $1 Million Donated to Study Role of Genetics and Alternative Therapies in ME/CFS
Mt. View, CA, May 6, 2013 – The Open Medicine Institute (OMI), an organization with a mission to improve health care by applying a multi-disciplinary, “big data” approach, today announced that it has received over $1 Million in contributions to undertake novel research into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
The Edward P. Evans Foundation, a non-profit with a mission to support transformational and collaborative medical research, has given significant funding to the Open Medicine Foundation to support a key study investigating the role of genetics and potential heritable risk in this debilitating chronic disease. The Open Medicine Institute will lead the investigation. The 12-month study will use the most advanced technology available to measure DNA sequences in a set of ME/CFS patients and unaffected persons. It will include whole genome sequencing and analysis, DNA methylation investigation, HLA and other molecular level testing of areas of interest in a selected group of approximately 1000 individuals. Ron Davis, PhD, of the Stanford Genome Technology Center will be a key collaborator on the study.
This is the first fully-funded research project stemming from the OMI-MERIT Initiative – a new approach to tackling ME/CFS based on the collaborative efforts of an international network of recognized disease area experts.
The Neuro-Immune Disease Alliance has also donated funds that will support an OMI-led pilot study examining the potential benefit of a novel therapy (Moringa oleifera). This project will be the first to apply molecular biology tools and standardized scientific methods and to evaluate a non-pharmacologic substance with reported anecdotal benefits in treating ME/CFS. Natural killer cells and other immune markers will be tested in response to treatment with the natural substance and gene expression tests will be performed on certain individuals.
“We are delighted to partner with the Edward P. Evans Foundation and use their generous donation to conduct a needed study into the genetic component of a prevalent but largely ignored disease that until now, has been deemed ‘too complex’ to understand and treat,” said Andreas Kogelnik, MD, PhD, founder of the Open Medicine Institute and Principal Investigator on both studies. “We look forward to a successful, ongoing relationship with their foundation that, like OMI, is focused on high-quality, collaborative research. We are also pleased to have received significant support from NIDA, an organization fully committed to improving diagnostics and treatments for ME/CFS and other neuro-immune diseases.”
The Open Medicine Institute is fostering a new health care model by integrating direct patient involvement with a multi-disciplinary, big data technology approach to advance the understanding of complex diseases and directly improve outcomes. The Institute’s immediate research efforts focus on poorly characterized diseases such as: ME/CFS, Autism, Lyme, Multiple Sclerosis, other neuro-immune conditions and certain cancers. The translational model is applicable to a wide range of diseases and conditions.
Claims of the medicinal effectiveness of the Moringa tree have encouraged Jed W. Fahey, Sc.D. and his colleagues at John Hopkins School of Medicine, to do a review of the reports of the medicinal and nutritional properties of this product, available at www.TFLJournal.org/article.php/20051201124931586
OMI is committed to applying a multi-disciplinary, big data approach to the health care system to advance the understanding of “difficult” diseases and improve patient outcomes. OMI maintains a clinical research facility based in Mt View, next to El Camino Hospital (“the hospital of Silicon Valley”), including clinical space, laboratory draw station and core genomic/biotechnology laboratory, informatics core, and physiology laboratory. In addition, OMI interacts with a large network of like-minded international collaborators: solo physicians, academic centers, laboratories, industry, large health systems and others. OMI has developed and employs a novel technology platform – OpenMedNet – that facilitates information sharing (patient consented and HIPAA compliant) and optimizes collaboration amongst all participants in the health care continuum. OMI’s Board and Advisors include recognized innovators and leaders in the fields of medicine, genomics and technology. OMI is a California Community Benefits Corporation committed to returning valuable results to the patients and communities it serves. For more information about the Open Medicine Institute, please visit: www.openmedicineinstitute.org
About OMI-MERIT (the Myalgic Encephalomyelitis Roundtable on Immunology and Treatment) is an international collaborative of physicians and researchers from leading institutions and clinics to identify biomarkers for ME/CFS and accelerate new clinical treatments and therapies. For additional information on OMI-MERIT projects please visit: http://openmedicineinstitute.org/research-initiatives/mecfs-merit/
ME/CFS is a complex chronic disease affecting multiple body systems/organs. The disease is characterized by abnormal persistent or relapsing fatigue, post-exertional malaise/fatigue, sleep dysfunction, cognitive dysfunction, muscle/joint pain and headaches. Post-exertional malaise/fatigue, which is a hallmark of the disease, describes the worsening of symptoms and incapacitating cellular-level fatigue experienced following physical or mental exertion, sometimes even brought on by walking across a room.
The prevalence of ME/CFS is much higher than many realize, affecting children, teens and adults. There are few effective treatments and no diagnostics, it is currently diagnosed only by exclusion. In the US, the illness is more prevalent than lung cancer, leukemia and AIDS combined. (CDC and SEER Report, 5-year prevalence rates).
Donations: Scientific and medical research advanced by the Open Medicine Institute is supported by generous organizations and individuals. Donations can be made online to the Open Medicine Foundation, a 501(c)(3) non-profit at: http://openmedicineinstitute.org/donate-to-research/give-money-give-time/
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