New effort to understand chronic fatigue syndrome launched

2.5 million Americans may be affected by a mysterious and debilitating disease that costs up to $24 billion annually

October 23, 2017

RESEARCH TRIANGLE PARK, NC— Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a well-known, but poorly understood disease. Experts do not yet know what causes ME/CFS, nor are lab tests available to diagnose the condition. What is known is that ME/CFS is disabling, complex, and costly, with annual costs up to $24 billion and 836,000 to 2.5 million Americans affected according to a recent Institute of Medicine report. 

In partnership with the National Institutes of Health, researchers from RTI International have joined a new effort to help tackle the debilitating disease. The effort will promote:

  • Collaborative basic science research into the mechanisms of illness,
  • Longitudinal studies of individuals with ME/CFS, and
  • Access to high-quality information for basic and clinical researchers, academic and practicing physicians, healthcare professionals, patients, and the lay public.      

“There are widespread misconceptions about CFS—that it is somehow due to laziness or exhaustion or that it can be easily solved with effort and exercise,” said Rick Williams, PhD, Principal Investigator at RTI International. “Neither belief is true. We want patients, patients’ families, policymakers and researchers to have access to a wealth of rigorously-conducted research. There is an immediate need to learn more and improve the quality of life for those with ME/CFS. This coordinated effort is a response to that need, and will shed new light on this disease.” 

The work is part of an NIH-funded coordinated scientific research effort on ME/CFS. NIH will support the creation of a consortium made up of three Collaborative Research Centers (CRCs) and an RTI-led Data Management and Coordinating Center (DMCC). Over the past three decades, RTI has served as the data coordinating center for more than 25 multisite/multi-study consortia that include a portfolio in HIV/AIDS, maternal and child health, traumatic brain injury, and other emerging public health challenges.

The data management and coordinating center at RTI will promote the development of new scientific research ideas by fostering partnerships among the collaborative research centers and the broader research community. For example, we will bring together research data from the collaborative research centers into a unified federated database to support widespread, secure access, and use by many researchers.

The project will also provide state-of-the-art data processing systems and analytics tools, as well as oversee efforts to standardize complex data collected by researchers. These activities will accelerate the pace of learning about the biological processes that cause ME/CFS and allow it to persist or worsen for many years, with the long-term goal of identifying targets for potential treatments.

“The ME/CFS community has clinical researchers who perform cutting edge investigations and integrate technical advances to expand understanding of the disease and potential treatments,” Williams said. “To harness those capabilities, a high-performance computing infrastructure to analyze the vast volumes of data generated is required.”

Another important aspect of the collaborative research centers is their engagement and involvement with ME/CFS advocacy groups and individuals with ME/CFS in their programs. Because ME/CFS patients are the true experts in this poorly-understood disease, the activities of the research consortium will be closely integrated with multiple ME/CFS advocacy groups.