Chronic Fatigue Syndrome Reframed

To more accurately reflect the condition, the Institute of Medicine recommends renaming it systemic exertion intolerance disease.

By | February 11, 2015

WIKIMEDIA, SEATTLE MUNICIPAL ARCHIVESChronic fatigue syndrome is a fairly apt description of what sufferers endure, but an Institute of Medicine (IOM) panel suggests a redefinition. Along with new diagnostic criteria, the experts offer a new name: systemic exertion intolerance disease (SEID).

“This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives,” the committee members, chaired by Ellen Wright Clayton of Vanderbilt University Medical Center, wrote in a summary of their report.

The new diagnostic criteria include an impairment in participating in normal activities for at least six months; unrefreshing sleep; “post-exertional malaise”; and cognitive impairments or a worsening of symptoms that can be relieved by lying down. Such specifics “will in the end get more people cared for and treated,” Peter Rowe, a committee member, pediatrician, and chronic-fatigue expert at Johns Hopkins Children’s Center, told Nature News.

The changes are not universally welcomed by the chronic fatigue community. A physician who treats patients with the condition, Derek Enlander, told Nature News he worries that the diagnostic criteria are too broad. And Al Jazeera America pointed out that in 2013, 50 researchers and clinicians familiar with chronic fatigue penned a letter opposing the IOM’s project and voicing their support for an existing diagnostic, the Canadian Consensus Criteria. Al Jazeera also reported: “The [IOM] report’s million-dollar price tag can seem quite high if you consider that annual federal funding for [chronic fatigue syndrome] is about $5 million.”

Others supported the committee’s conclusions, saying that their criteria more clearly define the disease. For instance, Christine Williams, vice chair of the board of directors for the advocacy group Solve ME/CFS Initiative, told The Washington Post: “I have been sick for six-and-a-half-years, and this is definitely the most encouraging thing that I have seen.”

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Avatar of: altscience

altscience

Posts: 2

February 12, 2015

I could care less what they call it. The fact remains that people with this disease acquire viruses that wreck them (HHV-6, CMV, or EBV). I had it for 16 years, gave up on the medical community and the alternative medicine scene and got rid of the wrecking virus by doing blood electrification. I know it sounds strange but it works. Viruses are made ineffective in their ability to infect cells after exposure to minute amounts of electrical current. This current is easily "injected" into the blood by placing electrodes on the wrist closest to the arteries. There are a few scientific studies about the effectiveness of electricity against HIV, the herpes virus (HSV-1), bacteria, and Adenovirus type 5 so don't think this is some kind of New Age pseudo science. It is the medicine of the future.

Avatar of: Shadwell

Shadwell

Posts: 2

February 12, 2015

I do appreciate this piece highlighting what is a major public health issue that affects 1 million Americans and costs us over $20 billion/year in health care costs. However, I would take issue with its opening sentence. Fatigue is not an apt description of a disease that can leave sufferers so ill that at the extreme end of the spectrum they are too weak to swallow, speak, or watch television. Moreover this is a disease of a very specific type of "fatigue": a pathologically long period of recovery in multiple organ systems of even minor exertion (such as grocery shopping, taking a shower, or speaking on the telephone). Which is why the IOM panel recommended changing the name from one that is fairly trivializing (everyone these days is chronically fatigued) to one that emphasizes the systemic disease state brought about by exertion in these patients.

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