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The Name That Doesn't Say It All

Some doctors, journalists, and researchers, unaware of the research that has found CFIDS patients to be some of the most disabled of those with chronic illness, have tried to prove that CFIDS is a movement of overtired, depressed individuals fighting to claim a popular name for their pathology. On the contrary, most CFIDS patients have strongly objected to the name of the illness and virulently opposed it through name-change initiatives. You can read about the history of the name-change debate by clicking history or timeline.

Unfortunately, the vague name of the illness has led to misinformed comments about CFIDS, like this one from's medical advice columnist Dr. Bob:
"Talk about mass hysteria, this is a case of a non-diagnosis becoming a national epidemic. You can thank a bunch of self-important doctors and ill-informed, self-righteous support groups revving up a populace primed to enjoy poor health. If crucifixes were still in vogue, I am sure that there would be no shortage of volunteers. Once upon a time chronic feelings of lassitude, lack of energy, generalized aches and pains and sleep disturbances were considered typical of depression. . . . The term means NOTHING."
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Read another misinformed article at "Making ourselves sick."
Read list of CFIDS symptoms

As psychologist Katrina Berne writes in her book, Running on Empty, "Common to both CFIDS and major depressive disorder (MDD) are fatigue, lethargy, anhedonia (inability to experience pleasure), sleep disruption, lowered activity level, impaired concentration and memory, descreased libido, and weight changes, but MDD shares only some of the features of CFIDS. . . .Unfortunately, many physicians cling to the 'psychologized' notion of CFIDS, continuing to misdiagnose and mistreat their patients." The fact that symptoms are perceived as vague, when in fact most CFIDS patients experience a sudden-onset of the illness that dramatically (and often overnight) cuts their activity level to less than half, has contributed to this confusion over CFIDS.

How Diseases are Named

Though a name-change debate has raged for years in the CFIDS community, and most researchers have argued that a new name should be based on a clinical marker, the naming of illness is more an art than a science, almost poetic in nature.

Cancer comes from the Greek "karkinos" and Latin "cancer," both meaning crab, to describe the crab-like appearance of the veins in external tumors.

Lupus is named after the Latin for wolf, because of the characteristic malar rash that develops on the face, giving sufferers a wolf-like appearance.

Multiple Sclerosis is named after the hardened tissue
that forms patches in the brain and spinal cord.

Herpes comes from the Greek and means to "creep like a serpent."

Syphilis was named for a hero in a 16th century poem. Influenza, formerly named Grippe after the French word for seizure, was renamed after the Italian word for influence, based upon the belief that epidemics are influenced by the stars. Lyme disease is named after a town in Connecticut. Yellow fever is named after the color it turns its victims.

Though sophisticated tests pinpoint numerous physiological abnormalities in patients, CFIDS has been depicted as amorphous and, instead of being given a poetic name to render the felt quality of the symptoms, named after a concept so pedestrian it has been drained of meaning. "Fatigue" is a nondescript word. Like "depression," it is a word most people think they have experienced. But while the difference between rainy-day sadness and suicidal depression is huge, so is the gap between standard tiredness and CFIDS fatigue. People with CFIDS often have trouble walking between rooms or lifting a grocery bag. The illness produces complete bodily catastrophe.

The notion of CFIDS as a vague condition simply arose out of its vague terminology. Charles Darwin, when he first heard a description of a giraffe, exclaimed, "There cannot be such an animal." CFIDS, even bigger than a medical giraffe, is almost like Sesame Street's elusive giant puppet snuffleupagus - witnessed only by believers. A study entitled "Stigma and Chronic Fatigue Syndrome" found that more than 75% of CFIDS patients have been labeled a psychological case by at least one physician. Most of these seek out other doctors, leading to a self-perpetuating cycle where disbelieving doctors rarely see progressive cases of CFIDS. Doctors who see many patients with CFIDS say that its symptoms are incomparable and that false cases are easy to pick out. Because of the lack of funding for physician education, most doctors are not even aware of the strict CDC guidelines for CFIDS diagnosis. Generally, people with CFIDS experience some combination of debilitating symptoms every single day. The symptoms are not vague. They are merely so grand and evasive that, like the elephantine Snuffleupagus, they require a perceptive witness.

Finding a Clinical Marker

How hard is it to find a clinical marker for CFIDS? Well, if Dilnaz Panjwani, a researcher who began studying CFIDS at age twelve, is any proof, even a child can do it. Three research teams are close to developing clinical markers for CFIDS. Read about them by clicking on the links below:

AIDS was originally called "Gay Related Immune Deficiency." Multiple Sclerosis was once called "Hysterical paralysis."
Dr. David Bell estimates that 25% of the general population suffers from "chronic fatigue." "Chronic fatigue" is a symptom of numerous illnesses, or a result of overexertion. It is not the same as Chronic Fatigue Syndrome or CFIDS, though the two are often used synonymously.

Some parts of this page were excerpted from Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome. Edited for clarity. Copyright The Haworth Press and Peggy Munson. Cannot be reprinted without permission.

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