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A Disease Like No Other: The Voices of Chronic Fatigue Syndrome

 

By Craig Maupin at http://cfidsreport.com

Introduction 

What is ‘Chronic Fatigue Syndrome’ (CFS)?    The name "chronic fatigue" certainly sounds benign, almost harmless.   The name also sounds common.

Fatigue is a symptom that everyone has experienced at one time or another. According to surveys, fatigue is also the most common complaint heard by doctors. People blessed with health, as well as those who have a chronic illness, frequently experience the symptom of fatigue. However, while they may know fatigue, they may not know chronic fatigue syndrome.

I vividly recall when I first heard the name 'Chronic Fatigue Syndrome' in 1988.    At the time, I was extremely disappointed in the choice of the name.    I strongly felt that naming a devastating illness after the ubiquitous symptom of “chronic fatigue” would a recipe for future confusion and public apathy.  

 I wasn’t alone in my feelings. Dr. Anthony Komaroff, who was present at the meeting in which the name was chosen,  states:   “None of the participants in creating the 1988 case definition and the illness name ever expressed any concern that the name might appear to trivialize the illness.    We simply were insensitive to that possibility, and we were wrong.   Since “fatigue” is a universal human experience, I’m afraid some people have responded to the word “fatigue” in the name by thinking “I’m tired now and then, like everyone, “Why is this even an illness?”

Many feel the name has not only influenced public perceptions of people with the illness, but those of government employees, clinicians, and scientists.   What we do know is that names matter, for any product, person, or illness. 

Fatigue, as a symptom, is also shared by almost all illnesses.  In 1994, government agencies urged researcher to begin to integrate various “fatiguing illnesses” into chronic fatigue syndrome (CFS) research samples.   Since that time, confusion as to what CFS is, or isn’t, has grown.    Given the broader definition, it is easy to see why many feel that "true" CFS is a vanishing and poorly-defined illness.

Yet, amidst the politics and confusion are voices.  If we listen, these voices can tell us that CFS is a disease like no other.   CFS is as devastating as it is unique.    In the mid-1980’s, Dr. David Bell was a clinician who dealt with a cluster outbreak of chronic fatigue syndrome (CFS) among his patients in Lyndonville, NY.   Now, as a researcher, he sums up CFS as definable and unique:   “I disagree that you should rule out every other disease and then you're left with CFS.   The pattern of fatigue and activity limitation is a little different from other illnesses that cause fatigue.”

This series of articles, titled "A Disease Like No Other", attempts to bring readers inside the realm of what it is like to live under the grip of chronic fatigue syndrome. Divided into three sections -- fatigue, neurological, and orthostatic intolerance -- readers will begin to understand chronic fatigue syndrome (CFS) from firsthand accounts. What is the flu-like “fatigue” of CFS? What makes the illness unique? And finally, what is the personal cost of the disease to those who suffer from it?  The final article talks about the personal cost of CFS, in a way most readers can understand.

There is no better way to learn about CFS than from those who live with it.  They speak in this series as well.   Laura Hillenbrand, author of the critically acclaimed Seabiscuit, expresses a common sentiment among those with CFS, “When you say 'I have chronic fatigue syndrome,' people say, 'Oh, yeah, I have that, too!'”   Hillenbrand wonders, “How can chronic fatigue describe a disease where you cannot sit, eat, walk?"   It is a good question.  

This series cuts through the confusion, takes the blinders off, and reveals what chronic fatigue syndrome (CFS) can be like for those who experience it's costs firsthand.   CFS exacts a tremendous price from its sufferers, both personal and collective.  CFS creates havoc that few other illnesses can approach. CFS is truly, a disease like no other.

 

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