Kathleen Houghton

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Despair and Frustration Reality for Sufferers of Chronic Fatigue Syndrome

Those of us in Alaska who suffer with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) share a special sense of loss in the recent death of Judith Curren. Her death became the focus of nationwide media attention because Dr. Jack Kevorkian reportedly assisted with her suicide. But it is not the doctor's notoriety that drew us to Judith Curren's story. What hit home for us was the news that Judith was a fellow sufferer of the never-ending pain and debilitation of CFIDS.

CFIDS is a serious and complex illness characterized by incapacitating fatigue, neurological problems which are consistent with an organic brain disorder (often accompanied by brain lesions), severe impairment of the immune system, and many other debilitating symptoms. Many people in the early stages describe CFIDS as the "flu that never went away," complaining of profound fatigue, sore throat, swollen lymph glands, irritable bowel, inability to sleep and concentrate, balance problems, severe muscle pain, headaches, numbness and tingling, intolerance to light, and changes in body temperature. A severe disruption in ability to function.

This disease attacks both adults and children. It often comes without warning, leaving its victims alive, but robbing them of almost everything else. Careers, creativity, education, goals, relationships, energy, income and passion are all swept away in a gray flood of debilitating symptoms. Family relationships and finances are stretched beyond the limit in a struggle to restore the victim's health. And, if all that weren't bad enough, CFIDS victims are often misdiagnosed by the physicians they go to for help!!!

Unfortunately, many doctors persist in the false belief that CFIDS is an emotional rather than a physiological disorder. Yet the Center for Disease Control (CDC) has placed CFIDS on its list of Priority-1 New and Re-emerging Drug Resistant Infectious Diseases. An infectious disease is not an emotional disorder!

Not only are many CFIDS victims misdiagnosed, but their illness is often misunderstood by family and friends. As a result, many suffer needlessly in isolation. The profound tragedy of Judith CurrenÕs case was her years of severe pain and suffering under the physical oppression of CFIDS.

CFIDS is a silent epidemic. The average person has never heard of it. Yet the current rate of infection in the U.S. population is estimated to be 300 cases per 100,000 people. By comparison, the polio outbreak of the 1950s was considered to be a dangerous epidemic with an infection rate of only 20 cases per 100,000! So far there is no cure for CFIDS.

Wake up, Alaska! CFIDS is a real disease attacking real people. And it is no respecter of Alaskans. It is a silent, stalking monster that has victimized hundreds of people right here in our community, and the numbers are growing. You, your child, a friend or a loved one, could be next. Unlike HIV and AIDS, medical science has yet to unravel the mystery of how CFIDS is transmitted. It is time to pull the cloak of silence off this beast. Alaskans should insist that the medical community and government health authorities acknowledge CFIDS as a real physiological illness, and get serious in learning about it and properly diagnosing and treating patients with it.

CFIDS patients and their families in Alaska need to know that they are not alone and that there is help and hope. The CFIDS Network of Alaska is local organization that is getting the word out. The network serves as a clearinghouse for CFIDS related information. In addition the group holds monthly meetings supporting awareness, education and current research. We encourage CFIDS victims and their families to attend. The CFIDS Network of Alaska can be reached by calling: (907) 243-5800 or (907) 344-5396. If all of us work together, we can end the CFIDS nightmare.

© Kathleen Houghton, Director, CFIDS Network of Alaska, 1996

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