The National Institutes of Health is investing more time and resources in its research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in order to work towards identifying causes and possible treatments for the troubling, mysterious disease.
New initiatives will include launching a research protocol at the NIH Clinical Center to intensely study patients with ME/CFS, and rejuvenating the research of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) to lead a multi-institute research effort.
“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, MD, PhD, in a press release. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”
The renewed efforts by the NIH are the result of an NIH-sponsored Pathways to Prevention meeting that generated recommendations for ME/CFS research strategies, as well as guidelines published in a recent Institute of Medicine report that recommend new diagnostic criteria for the disease, as well as a new name: Systemic Exertion Intolerance Disease.
Because the pathology of ME/CFS is unknown and there is no test to diagnose the disease, efforts to study ME/CFS so far have been limited because each study must use its own diagnostic criteria. This makes comparing research across studies difficult.
To address this, the NIH is planning to design a clinical study that will enroll participants who have developed fatigue following a rapid onset of an acute infection. The study will aim to improve understanding of what causes the disease and how it progresses by examining the clinical and biological characteristics of ME/CFS following a probable infection.
The NIH will also be considering additional ways of supporting ME/CFS research outside of the NIH.
- NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. National Institutes of Health website. Published October 29, 2015. Accessed November 5, 2015. http://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome