A panel of 15 members with The Institute of Medicine met Tuesday at the request of the Food and Drug Administration, the Centers for Disease Control and the Department of Health and Human Services to propose a new name for what has been called chronic fatigue syndrome since 1988.
The reason behind renaming the syndrome to “systemic exertion intolerance disease” was that the previous name doesn’t accurately indicate the symptoms sufferers experience – namely, it’s not just about being tired all the time. It’s way more than that. And it’s not about being depressed either, which is a common misconception.
The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition, told The New York Times.
When Investment Rhymes with Canada
Canada has a proud history of achievement in the areas of science and technology, and the field of biomanufacturing and life sciences is no exception.
The new name is not binding, but the authors believe it will affect treatment and diagnosis.
Decades ago the syndrome or disease was named myalgic encephalomyelitis (M.E.), which means “brain and spinal cord inflammation with muscle pain.” The authors of the report don’t believe this term is accurate either, though, because muscle pain isn’t the most prominent symptom.
The syndrome is difficult to diagnose and define, but the Times explained what the current causes and criteria include:
Most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments.
The new diagnostic criteria include six months of profound, unexplained fatigue and post-exertional malaise, as well as a third key symptom: unrefreshing sleep. Patients must also exhibit cognitive problems or “orthostatic intolerance,” an inability to stand upright for more than a short period.
Although the panel believes changing the name is for the better because it is more accurate, Dr. Leonard Jason, a psychology professor at DePaul University in Chicago and an expert on the illness, believes patients won’t just accept the new name.
“The committee has come up with a name without vetting it,” said Jason. “And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”
It isn’t clear if he believes patients would prefer to stick with chronic fatigue syndrome or if a different name altogether would be better. For now, it seems that technically the syndrome could be referred to by three names, which could likely lead to confusion. But perhaps over time a shift will happen naturally and one diagnostic name will become the norm for the approximately one million Americans living with the syndrome.
[Photo from Flickr user Graham Reznick]
