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Burlington Free Press - 1991

Burlington Free Press, May, 1994

Tired of Being Sick
INVISIBLE AND RARE,
CFIDS MAY SEEM LIKE A DISEASE OF THE IMAGINATION.
BUT FOR ITS VICTIMS, THE SUFFERING IS VERY REAL.

By Maria Blackburn
Free Press Staff Writer

Jim Boyce
Photo by Adam Pike Riesner, Free Press

Jim Boyce of Essex Junction says getting outside in the fresh air helps him cope with chronic fatigue and immune dysfunction syndrome.
Boyce thinks people misunderstand this disease.
Neither snow, nor rain. nor heat, nor gloom of night ever kept Debbie Ross-Noyes from her job as a U.S. Postal Service letter carrier.
But chronic fatigue and immune dysfunstion syndrome (CFIDS) did.
The energy Ross-Noyes once used to deliver mail is gone now. Since she was diagnosed with CFIDS in 1991, the 41 year old single parent from North Underhill has suffered from pervasive weakness and fatigue, daily headaches and pain in her right leg and hip thats so severe it sometimes keeps me awake nights.
Absent from work since October 29, 1993, Ross-Noyes lost her job two weeks ago because of too many unscheduled sick days. I was devastated, she said. I loved my job. I loved working outside. I loved meeting the customers and being a postal employee.
A spokesman for the U.S. Postal Service said he could not comment on Ross-Noyes dismissal.
Its been more than a decade since CFIDS, which is estimated to affect between 2 million and 5 million Americans, began gaining attention. At first the mysterious collection of symptoms was dismissed by some as yuppie flu and criticized for being purely psychological. In 1987 the Centers for Disease Control and Prevention developed a name and definition for the illness. And as doctors grew to study. diagnose and treat CFIDS, it slowly began to gain legitimacy.

In Vermont, where it is estimated that more than 100 people have CFIDS, Gov. Howard Dean has designated May 12 as CFIDS Awareness Day. While this step shows progress is being made to educate people about the illness, some Vermonters with the disease say not enough is being done.
Doctors need to be more aware, said Jim Boyce of Essex Junction who founded a Chittenden County support group for people with CFIDS several years ago. Doctors are trained to cure people, and when they discover there isnt a cure for CFIDS some get frustrated. People need to be informed this is a real disease.
Its time to realize CFIDS has become an epidemic, said a Burlington woman who did not want her name to be used because she feared the publicity would adversely affect her appilication for disability benefits. Funding for research is urgently needed. How can we find a cure if we still dont know what CFIDS is or what causes it?
Some doctors believe CFIDS is caused by one or more viruses that affect the immune system, says Dr. Alan Curtiss an internist and
cardiologist who treats CFIDS patients at his Shoreham office. Once the virus hits the body and the body reacts to the virus, for some reason it does not switch off the immune system, he said. From that point, the immune system is always turned on high. and patients experience symptoms.
One of the biggest problems with the illness is that there are no proven treatments, Curtiss said. People learn to rest, eat right, and avoid things which trigger episodes, he said. There are some antivral agents that hold promise, but there really isnt anything thats been proven to work.
Fewer doctors are dismissing CFIDS as being caused by the mind, says Winston Lewis, a Burlington psychologist who counsels people

with CFIDS, but the illness is still not widely understood by friends, family, and employers.
I think theres a stigma attached to it because it is not well understood and diagnosed, she siad. Some of the difficulty people have is that they look physically well, so others dont know how life-limiting and constrained they really are.
As a result, some CFIDS patients, like Sharon Luke of Essex Junction are battling for disability benefits, while others, like Ross-Noyes, are dealing with unemployment.
Ive always been a fighter, said Ross-Noyes. But CFIDS takes the life out of living.