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David Tuller: Chronic Fatigue Controversy

Firestormm

Firestormm

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Chronic Fatigue Controversy
by David Tuller, Dr.ph. | March 12, 2014

Chronic fatigue syndrome has devastated the lives of hundreds of thousands of Americans. Everything about the condition—what to call it, how to identify and define it, what treatment is indicated—has been subject to dispute. In fact, the patient community has long been at odds with health officials, who have frequently framed the illness as largely psychosomatic. Yet abundant evidence has linked chronic fatigue syndrome to neurological, immunological and hormonal abnormalities.

Now a government-sponsored panel is seeking to develop a new set of diagnostic criteria for the disease. The Department of Health and Human Services commissioned the report last September from the Institute of Medicine (IOM), an independent organization whose well-regarded reports frequently inform government policy about controversial and complex issues.

But the panel, which recently held its first and perhaps only public hearing, is facing strong opposition from top researchers and doctors as well as many patients. They are upset because eight out of 15 panel members have no expertise in the illness. (In most circumstances, the diagnostic criteria for a condition are developed by the field’s top clinicians and researchers.) The critics fear that the panel will once again approach their illness from a psychiatric perspective, leading to misdiagnoses and to treatments that are effective for people suffering from depression and other mental health illnesses but not for those with chronic fatigue syndrome.

A bit of context: The word “fatigue”—as everyone who knows anything about the illness agrees—trivializes the experience of patients, who experience a profound exhaustion. Both experts and patients prefer a more scientific name: myalgic encephalomyelitis, which means “painful inflammation of the brain and spinal cord.” (In fact, the illness is now frequently referred to by the acronym ME/CFS; the IOM panel is also supposed to render a verdict on the name when it issues its findings early next year.)

No known cause of ME/CFS has been identified, and no medication is approved for treatment of the underlying disorder. Experts now believe that something, in most cases an acute viral infection, triggers an aggressive immune response that never shuts itself off. Because the illness is currently diagnosed through symptoms that can resemble cases of depression, distinguishing between the two can be difficult....

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justinreilly

justinreilly

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