Imagine feeling so exhausted that every physical exertion required a mountain of effort, and your brain felt like it was in a fog all the time.
That’s the plight of people who suffer from a disease called Chronic Fatigue Syndrome — a debilitating illness that affects more than a million Americans.
In addition to extreme fatigue that is not helped by bed rest, the disease can cause joint and muscle pain, mess with your concentration, and make sleeping extremely difficult.
Science writer Brian Vastag suffers from CFS, which is also known as Myalgic Encephalomyelitis (ME) or ME/CFS. Here’s how he described the disease in an open letter to National Institues of Health director Francis Collins first published in July in the blog, “The Last Word on Nothing,” and reprinted by The Washington Post:
“A year before I fell ill, I backpacked Rocky Mountain National Park. My legs carried me up to the continental divide, where I sat on the edge of a precipice marveling at the peaks around me. At nearly 13,000 feet above sea level, the thin air addled my thinking — a feeling I now live with every moment, as if someone poured molasses into my ear, gumming up all trillion synapses.”
In his letter, Vastag urged Collins to support more research on what he called “the most forlorn of orphan illnesses.” (An orphan illness is one that is either rare, or has been ignored by the medical establishment.)
And last week, Collins announced the NIH would do just that. The agency said it plans to launch a research protocol to “intensely study” people with Chronic Fatigue Syndrome, and “re-invigorate” the efforts of an existing research group, as part of a multi-institution effort led by the National Institute of Neurological Disorders and Stroke (NINDS).
“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” Collins said in a statement. “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 cause of Chronic Fatigue Syndrome is unknown, but it’s thought that infections with certain viruses, immune disease and allergies, or stress could play a role. There is currently no cure, although some of the symptoms can be managed.
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