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NIH Study Details Self-Reported Experiences With Post-Exertional Malaise In ME/CFS
Sunday 27 September 2020
From the US's National Institutes of Health:
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NIH study details self-reported experiences with post-exertional malaise in ME/CFS
First publication from NIH ME/CFS study takes deep dive into key feature of the disease.
One of the major symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), the worsening of symptoms after physical or mental activities. Using their own words and experiences, people with ME/CFS described how debilitating PEM can be in a study in Frontiers in Neurology. This is the first publication to come out of the National Institutes of Health’s intramural post-infectious ME/CFS study.
“Post-exertional malaise following normal activities is unique to ME/CFS and we do not understand the biology underlying this severe and harmful feature of the disease,” said Walter Koroshetz, M.D., director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS). “In-depth conversations with people who experienced post-exertional malaise and listening to them describe their individual experiences can provide a perspective not achieved through surveys. This study provides a window into just how much post-exertional malaise can affect a person’s quality of life.”
Researchers led by Avindra Nath, M.D., clinical director of NINDS, recruited 43 individuals with ME/CFS to participate in nine focus groups discussing their experiences with post-exertional malaise, including activities that led to it, how long it lasted, and techniques they used to help decrease their symptoms. Five out of the nine focus groups included participants who experienced PEM following a cardiopulmonary exercise test (CPET), which can measure how the body reacts to exercise and is often conducted using a stationary bike.
The focus groups were part of a larger study taking place at the NIH Clinical Center designed to take a comprehensive look at ME/CFS preceded by an infection. The goal of the larger study is to identify clinical and biological aspects of ME/CFS that may improve understanding of causes and how the disease changes over time. Dr. Nath and his colleagues will also examine the progression of PEM in study participants who undergo a CPET. The researchers included CPET experience in the PEM focus groups to assist in the design of the exercise challenge of the NIH ME/CFS study.
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