Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, May 2, 1993 TAG: 9305030264
SECTION: EDITORIAL PAGE: F-3 EDITION: METRO
SOURCE: KATHRYN SCHWILLE
DATELINE: LENGTH: Medium
The other doctors declined to treat her because she has chronic fatigue and immune dysfunction syndrome.
The doctors had a variety of excuses. One said CFIDS (pronounced SEE-fids) patients take up too much time. Another said she'd treat her by phone, but didn't want to see her. A third has trained his receptionist to give this response about CFIDS: "Some doctors believe in it . . . we don't."
Ginger is fortunate to have a specialist to help with the CFIDS. But what she needed was someone to call about a cold or a sprained ankle. Someone who could treat the ordinary things.
Her life is anything but ordinary. She has a host of nasty, disabling symptoms that include profound muscle weakness, dizziness, balance problems, fevers, sleep disorders, swollen lymph nodes, horrendous headaches and debilitating exhaustion.
But Ginger's most serious medical problem is that she has a "new" disease.
Victims of new diseases follow a rough-and-tumble road in this country. The pattern is painfully familiar. Multiple sclerosis was once called "faker's disease." Parkinson's patients were once considered hysterical.
People with Alzheimer's were said to be just gettlng old. Once the disease was identified, patients and their families had to beg for several years before neurologists generally agreed it was in thelr purview.
Why must this pattern be repeated with every mysterious ailment that comes along? Why are physicians so reluctant to admit that something new has arrived?
And just how much medical information is required to make believers out of skeptics?
In the case of CFIDS, apparently a lot.
CFIDS, while not fatal, is a complex, often subtle disorder that results in metabolic and immune-system chaos. Often flu-like in the beginning, the disease can drag on for years. Its cause is unknown. People with severe cases have neurological problems that frighten them and baffle doctors.
No one knows how many Americans are afflicted, although in a 1990 Newsweek article epidemiologists estimated 2 to 5 million. The first U.S. cases were documented in Incline Village, Nev., in 1985, but it took three years of pressure from patients for the Centers for Disease Control to admit a disease existed. Meanwhile, other branches of the federal medical establishment routinely discredited patients and the doctors who treated them.
Across the country, patients - many too sick to work - fought back by joining support groups, financing research and renaming their illness to include something more consequential than fatigue.
At last, news stories no longer refer to the disorder's old derisive name, "yuppie flu." Prominent, peer-reviewed publications such as the Journal of Clinical Immunology have published studies that prove CFIDS is a serious and recognizable disorder. A Canadian research foundation has compiled a textbook.
Even one of the nation's most vocal scoffers has come around.
Just four years ago, Dr. Stephen E. Straus, chief of medical virology at the National Institute of Allergy and Infectious Diseases, published a study linking CFIDS to psychiatric disorders. Anguished patients condemned him.
Now, Straus says, there is evidence that CFIDS is an immune-system disorder.
Yet doubters remain. They apparently are oblivious, as Straus once was, to the fact that they appear foolish and insensitive as information about this disease accumulates.
Dr. Benjamen Natelson, who heads a team of researchers at the Veterans Affairs Hospital of East Orange, N.J., recently gave The New York Times his diagnosis of the trouble. "If most doctors can't find an abnormality in a lab test, they think it's the patient's fault," he said.
In other words, if they don't know about it, it doesn't exist. If they can't fix it, they don't want to believe it.
Thousands of CFIDS patients like my friend Ginger have frightful stories of rebuke and humiliation at the hands of so-called healers. Anything less than acceptance at this point is inexcusable. The information is available and every smart practitioner will review it.
The sad history of this disease should be an embarrassment to the medical community and a lesson in humility. Will it sink in this time?
CFIDS will surely not be the last disease to confound what we know, but it ought to be the final entry in this shameful list of disorders whose victims are belittled and ostracized before they are believed.
Kathryn Schwille, who grew up in Roanoke, was an editor at The Charlotte (N.C.) Observer when disabled by CFIDS in 1987.
by CNB