by Tara Allan Stewart

Created on: August 11, 2008

CHRONIC FATIGUE SYNDROME STILL MISUNDERSTOOD?
PATIENTS SPEAK OUT.

In the late 1980's, I was diagnosed with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) and Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS).

By the early 1990's, I was writing for "The CFIDS Chronicle," the journal for the CFIDS Association of America, Inc., based in Charlotte, NC, and started by Marc Iverson for the purpose of research, patient advocacy, and public awareness. I wrote a column for the Chronicle called "Dancing with the Serpent.," for the purpose of helping others sufferers take heart and learn ways to make life bearable.

I placed my own advertisement in "The CFIDS Chronicle" for letters, artwork, stories, poems, and essays created by people with CFIDS (PWC's) and the people who loved them. I didn't really expect much. I was bedridden with the disease, and I had a computer and printer in my bedroom left from my technical writing business. With no warning, the letters and goodies began to pour in from all over the country. I used these materials to put together a book called, Shadow & Light: The Voice of CFIDS, used by The CFIDS Association of America, Inc., to raise money and to educate newly diagnosed patients.

Because of the submissions to this book and my close interaction with patients and advocates, I feel I may have an insight to the misunderstandings of Chronic Fatigue Syndrome through the eyes of those who suffer every day to get through the terrifying myriad of symptoms.

I may use their voices (anonymously) to portray misunderstandings that remain to this day, in spite of the incredible amount of work done by the Centers for Disease Control (CDC) and the National Institute of Health (NIH) to remove the blinders from the eyes, minds, and hearts of the medical community and of society. My special thanks go to those who share their intimate experiences regarding Common Misunderstandings of Chronic Fatigue Syndrome and the pain caused by those misunderstandings. My thanks to you for caring.

Misunderstanding: "CFS must not be too bad if you walk; you could be in a wheelchair."

Patient Response: "The Invisible Chair"
"What about those whose limbs are intact
Whose hearing and sight still remain
But whose lives are crippled by overwhelming weakness
Whose bodies are wracked with endless pain . . .

What about the many unfortunate disabled
Who are not shown such kindness and care
Whose lives are tied and bound each day
to a real . . . "Invisible Chair" . . .

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