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How the name "Chronic Fatigue Syndrome" obscures a serious illness
Sunday 2 February 2014
How "Chronic Fatigue Syndrome" Obscures A Serious Illness
An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name.
Ten years ago, Jeannette Burmeister was working full throttle, logging 80-hour weeks as an attorney specializing in international commercial and employment law at the San Francisco area offices of a major law firm. So when she developed a sinus infection over the Christmas holidays in 2005, she assumed she’d bounce right back.
But she didn’t. The illness persisted; Burmeister then began suffering from profound lapses of energy, crippling problems with concentration and memory, and severe sleep disorders, among other symptoms.
“I went to work for two hours one day, hit a wall, and couldn’t go back the next day,” Burmeister, now 42, said in a recent telephone conversation. “I could not think straight. I had days where I couldn’t spell my name. And such complete exhaustion you can’t describe it, like you just ran a marathon, are hungover, and have the flu, all at once.”
She hadn’t heard of chronic fatigue syndrome until a friend mentioned it; when she looked it up, the symptoms seemed to fit. As with many people who have the illness, a battery of tests found that Burmeister had abnormally high levels of antibodies to a variety of common viruses, including Epstein-Barr virus, human herpesvirus 6, parvovirus, and coxsackievirus. The significance and meaning of such findings are not fully understood; people without the illness can also have elevated viral levels.
Burmeister said the disease — and its trivial-sounding moniker — has isolated her from former friends and acquaintances. They don’t understand how sick she is, she said, and she recognizes that explaining it to them is often futile. “First of all you’ve got the name,” she said. “And once you’ve put the name out there you’ve already lost most people’s attention, because then they say, ‘Yeah, I have a hard job,’ or, ‘I’m tired too.’”
More than 1 million Americans suffer from chronic fatigue syndrome, according to the Centers for Disease Control, although many experts believe that the agency’s figures are somewhat inflated. The illness is also known as “myalgic encephalomyelitis,” which means “painful inflammation of the brain and spinal cord,” and many people now refer to it as ME/CFS. Patients are used to having their symptoms belittled as imaginary or dismissed as a manifestation of depression by family, friends, colleagues, and doctors — even though compelling evidence has linked the complex illness to major immunological, neurological, and cognitive dysfunctions. Experts now believe that ME/CFS is likely a cluster of closely related conditions, triggered when an acute infection, or some other physiological insult such as exposure to environmental toxins or mold, kicks the immune system into a prolonged state of hyperactivation.
No drugs have been approved for ME/CFS, but Burmeister has found partial relief in recent years with twice-weekly infusions of the drug Ampligen, an unapproved immunomodulator that she can only obtain through an experimental treatment protocol. She blogs extensively about her illness and in 2012 testified before a Food and Drug Administration panel considering whether to recommend approval for Ampligen. (The panel voted 8-5 against it, citing insufficient safety and efficacy data.)
In recent months, her blog has doggedly tracked the creation of a new, federally commissioned panel charged with reviewing and updating the diagnostic criteria for the disease. The Department of Health and Human Services announced in September that it had requested the Institute of Medicine, an independent, highly regarded affiliate of the National Academy of Sciences, to conduct the study. At a public hearing in Washington, D.C., on Monday, Jan. 27, Burmeister plans to tell the members of the panel why she thinks their project stinks.
Few would claim that describing an illness with enough accuracy for clinicians to recognize it and treat it effectively is simple. But for most illnesses, creating diagnostic criteria — known as a clinical case definition — is not the stuff of high drama and conflict. ME/CFS, however, is not most illnesses.
The full article can be found here.
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