The National Institute of Health has awarded funding for ME/CFS Collaborative Research Centers and Data Coordinating Center to collaborative research teams that include the Bateman Horne Center of Salt Lake City, Utah (BHC). This funding represents the largest single investment in ME/CFS research in the last decade. BHC is a proud partner and collaborator on two of these awards.
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a debilitating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
The Jackson Laboratory for Genomic Medicine (JAX) led by Dr. Derya Unutmaz has received an award in the amount of $10.6M over 5 years, the BHC is the clinical core for this award. Unutmaz says the goal of the research center is to “transform the landscape of knowledge of ME/CFS” by tracking down the immune, metabolic and microbiome changes that lead to the disease, “so that the knowledge gained through the work of the Centers become an inflection point towards the goal of treating a disease that causes terrible suffering in millions of patients.”
BHC will support both clinical and research projects by collecting the necessary samples and associated clinical data from 200 early onset ME/CFS patients and 200 healthy subjects collected multiple times over the 5 years project period. The Bateman Horne Center will work with University of Utah Center for Clinical & Translation Sciences (UU CCTS) to educate local and regional physicians on the early diagnosis of ME/CFS.
BHC will expand its reach by partnering with Precise.ly. Precise.ly is a web and mobile-based personal data tracking platform that will be used in the study as the patient portal. This tool will allow patients to track symptoms, treatments and diet in addition to other measures. Precise.ly is led by Linda Avey, who previously co-founded the personal genetics company 23andMe.
BHC is also a collaborator on the award to the Center for Infection and Immunity to create the Center for Solutions for Myalgic Enchephalomyelitis led by W. Ian Lipkin of Columbia University. BHC’s role will be to assess the clinical utility of a simple office-based test for autonomic dysfunction, a key criterion in the diagnosis of ME/CFS.
Bateman Horne Center is a nonprofit medical clinic and research center of excellence leading the way in the medical advancement and treatment of ME/CFS and Fibromyalgia. BHC is headed by Dr. Lucinda Bateman, a leading internist who has focused her career on ME/CFS and expert researcher and microbiologist Suzanne Vernon, PhD.