Millions of Americans and others around the world suffer from an extremely debilitating illness called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is a poorly understood chronic disease characterized by long-lasting and profound fatigue, unrefreshing sleep, cognitive dysfunction, and pain. Very little is known about the biological basis of this disease, making it extremely difficult to diagnose and treat.
We are very excited to start this blog with the goal of chronicling the research at The Jackson Laboratory Collaborative Research Center (JAX CRC) for ME/CFS, the other two NIH funded ME/CFS CRCs, and ongoing research around the world. We intend to provide links and information on progress made by the CRC, as well as by other researchers in the ME/CFS community. We are hopeful that this will enable us to better engage the ME/CFS community and receive feedback from patients and advocacy groups in our efforts to find solutions for this disease.
The National Institutes of Health (NIH) has recently awarded one of three five-year Center grants to Derya Unutmaz, M.D. of The Jackson Laboratory (JAX), who has the hope of laying the scientific groundwork to develop reliable biomarkers for ME/CFS by utilizing systems biology approaches to determine the biological correlations of this disease. Derya Unutmaz will act as the Program Director for the CRC, with Julia Oh as the Associate Program Director. They are joined by Courtney Gunter, who will act as an Administrator and Patient Advocacy and Outreach specialist. The CRC will also involve a Steering Committee composed of several patient advocacy groups, as well as local ME/CFS patients who can provide valuable insight on how to engage the community and give hope to those suffering with ME/CFS.
ME/CFS and healthy control blood and stool samples will be collected through the CRC Clinical Core at the Bateman Horne Center in Salt Lake City, Utah, which is led by Cindy Bateman and Suzanne Vernon. Samples will then be analyzed at JAX-CRC. In addition, the CRC in collaboration with Linda Avey of Precise.ly will develop an ME/CFS questionnaire and online tracking platform for patients in the community to track their symptoms via online application.
It is our hope that this extensive research project will lay the groundwork for the biological basis of ME/CFS and help the millions of patients suffering from this debilitating disease.