ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Tuesday, October 1, 1996 TAG: 9610010021
SECTION: EXTRA PAGE: 3 EDITION: METRO
SOURCE: GARRET CONDON THE HARTFORD COURANT
School bells are ringing, and for once, AnnMarie Reveruzzi and Erin Bass can hear them. Both high school seniors are actually in their respective high schools this fall - not languishing painfully in bed.
Reveruzzi and Bass, both 17, suffer from Chronic Fatigue Syndrome. Between them, they have lost years of high school and missed many of the communal rituals of adolescence.
``I'm trying to be a teen-ager,'' says Reveruzzi, a senior at Enfield High School in Enfield, Conn., who has missed whole semesters of school. ``I haven't been able to be a teen-ager.''
Reveruzzi had mononucleosis in the seventh grade and never recovered. Bass had mono as a freshman at Glastonbury High in Glastonbury, Conn. As with Reveruzzi, Bass never seemed to get well, and she has been home-tutored until this year. Now both high school seniors are well enough to attend school part time, and they hope to go full time, if they can handle it.
Chronic Fatigue Syndrome - also called Chronic Fatigue and Immune Dysfunction Syndrome or Myalgic Encephalomyelitis elsewhere in the world and ``yuppie flu'' by detractors - is as mysterious and controversial an illness as they come.
There is no test for it, and no cure. Its cause is unknown. The federal Centers for Disease Control and Prevention defines it as a collection of specific symptoms. Basic to the diagnosis is long-term, disabling exhaustion. Victims describe being unable to walk. (Reveruzzi has had to use a wheelchair on family trips.) Joints hurt, the mind seems scrambled, headaches are severe and even the slightest exertion may land the CFS patient in bed for days - and that is just a sample of possible symptoms.
Various estimates suggest that between 200,000 and 500,000 adults have CFS in the United States. (CFS advocacy groups suggest that the number may be higher.)
It's not known how many teen-agers and children have CFS. Most CFS patients seem to be middle-class white women, although some researchers now believe that the demographics of the illness have more to do with who has ready access to doctors than who is actually getting sick.
The number of teens diagnosed with CFS is up at the Connecticut Children's Medical Center in Hartford, according to Dr. Lawrence Zemel, director of pediatric rheumatology. ``We're seeing 30 teen-agers with CFS, whereas five years ago, it was probably half that number,'' he says. An informal CFS team at the medical center is likely to become a full-fledged clinic in coming months, he says.
Adults with CFS have fought for more than a decade to get some respect for their ailment. The results have been mixed: Many doctors still don't recognize CFS as a distinct illness and believe that it has its roots in depression or other medical or psychiatric problems. Diagnosing CFS is tricky enough with adult patients - other illnesses with similar symptoms, such as Lupus, have to be eliminated. With teen-agers, many of the symptoms of CFS can also accompany the normal stresses of adolescence, and it can come on gradually.
Dr. Kevin Ferentz, associate professor of family medicine and director of residency at the University of Maryland School of Medicine in Baltimore, believes CFS is being overdiagnosed.
``I think there are probably a number of diagnoses that better explain chronic fatigue in teen-agers than Chronic Fatigue Syndrome,'' he says, citing depression, mood disorders, adjustment disorders and anemia in young women as more probable causes.
Zemel admits that it's tough to nail down a case of CFS but that most kids who meet the criteria and are also depressed appear to have developed depression after contracting CFS.
They've got every reason to be depressed, according to Leonard A. Jason, a professor of psychology at DePaul University in Chicago. Jason has studied CFS and is currently heading up a $2.5 million federal study to determine the prevalence of the disease in the population. He says he believes children and teen-agers with CFS have a harder time than adults because they must convince layer after layer of adults that they're not malingering.
Jason says adults may become understandably confused about what's going on with their kids. But he warns that unless parents are real advocates, the kids may have no one to talk to about their illness.
Parents convinced that the illness is real must lean on schools to provide special education services. Such measures as part-time schedules and home tutoring, if necessary, are further complicated by the cognitive effects of CFS, which include confusion, difficulty remembering facts and trouble absorbing reading material.
CFS students need more time for tests and must sometimes substitute videos for required reading. Because many teens with CFS are most alert for a few hours in the evening, this ``window'' is the best time for tutoring.
Michael Reveruzzi, AnnMarie's father, says his position as a sixth-grade teacher in Enfield may have added weight to his contention that his daughter needed special help. Enfield High School provided tutors for AnnMarie when she had to stay home and has tailored tests and courses to her abilities.
Still, Richard Pratt Prunty, a guidance counselor at Enfield High who assisted AnnMarie, says CFS is a hard sell for schools. CFS doesn't fit into traditional special-education categories.
Erin Bass notes that teen-agers who suffer from CFS try to get out of the house when they're up to it. She says classmates are likely to see her only when she's feeling OK. Naturally, they wonder why she isn't in school. She says no one but her family sees her when she's at her worst.
``The tiredness is like you just ran six miles,'' says Bass.
Both Bass and Reveruzzi hope they're on the upswing and can look forward to college. Although there is no cure, some CFS victims get better over time. (Dyer, who graduated from high school in the spring, says his condition has not improved.)
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