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The New Science Of Exhaustion46:30

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With guest host Anthony Brooks.

Chronic fatigue syndrome has been renamed: systemic exertion intolerance disease. We’ll look at a new name and new diagnosis.

A still of filmmaker Jennifer Brea in her documentary, "Canary in A Coal Mine." (Courtesy the Filmmaker)
A still of filmmaker Jennifer Brea in her documentary, "Canary in A Coal Mine." (Courtesy the Filmmaker)

As many as two and a half million Americans suffer from chronic fatigue syndrome. There is no formal diagnosis – but there is a huge debate about what it is and what to call it.  Many who suffer from it say the name, chronic fatigue syndrome, trivializes the illness.  So now, the Institute of Medicine has come up with a new diagnosis, and a new name:  Systemic Exertion Intolerance Disease, to better describe its debilitating effects.  This hour, On Point: what’s in a name? The debate over chronic fatigue syndrome.

Guests

Dr. Ellen Wright Clayton, professor of pediatrics and professor of law at Vanderbilt University. Co-founder of the Center for Biomedical Ethics and Society at Vanderbilt.

Dr. Derek Enlander, director of the Mount Sinai ME / CFS Center, where he is also a clinical instructor at the Ichan School of Medicine.

Dr. Daniel Neides, medical director for the Wellness Institute at the Cleveland Clinic. (@drdanwellness)

Jennifer Brea, director of "Canary in a Coal Mine" and a ME/ CFS patient. (@jenbrea)

From The Reading List

Institute Of Medicine: Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome — "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/ CFS. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives."

New York: Chronic Fatigue Syndrome Isn’t Just in Your Head — "Chronic fatigue syndrome — a condition marked by persistent daytime sleepiness and cognitive impairment — is something that many people, including medical experts, have long dismissed as a psychological or even imagined illness. But today, a new report from an Institute of Medicine committee argues that the syndrome is a real, physical disorder, with a particular set of diagnostic criteria. The committee members also propose a new name: systemic exertion intolerance disease, which, they say, highlights the extreme exhaustion sufferers experience after minimal physical, mental, or emotional effort. "

Al Jazeera America: Institute of Medicine calls for renaming chronic fatigue syndrome — "Most people with ME/CFS suffer from extreme exhaustion, made worse by even mild physical or mental effort. After a crash, known as postexertional malaise, recovery may take days or weeks, and sleep brings no relief. These symptoms are recognized as key defining characteristics of the disease, according to the new criteria. Problems with speaking, thinking and remembering, known as cognitive impairments, are also widespread among patients."

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