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 Salon.com'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."
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.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:
Earlier research on the enzyme abnormality that Ms. Panjwani discovered.
Information on the urinary marker
Information on other markers found in Newcastle testing
Rnase-L Enzyme Deficiency Disease and how it relates to CFIDS page
Dr. Robert Suhadolnik's testimony to Congress about the deficiency
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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