Why CFIDS Advocacy?

Over the holidays, an open house party was given by a local business person. I attended along with over 120 people, most of whom I had never met before. A group was discussing health insurance, so I joined in and commented about problems that people were having with disability insurance. A very well-dressed gentleman asked what I did for a living. My response was that unfortunately I was retired on a medical disability. He asked what my medical problem was. I explained that I was stricken with a classic case of acute sudden onset CFIDS.

He said, "What in the world is that?" I gave a brief explanation, and he laughed and said, "That's ridiculous. You can't get disability for something that is curable by a psychiatrist and a green and yellow pill (Prozac)."

I launched into a complete explanation of what CFIDS was, including quotations from Dr. Philip Lee and statements from Dr. Nancy Klimas and Dr. Anthony Komaroff. The gentleman turned beet red and stormed away from the group. I was told that he was a prominent medical doctor and director of a medical center. I replied that he should learn about medical conditions of today. After the applause stopped, I left the group.

That's why CFIDS Advocacy is needed.

The director of NIAID (a branch of the National Institutes of Health), Anthony Fauci, once expressed puzzlement over CFS victims' vehement reaction to being told their difficulties were psychiatric in origin.

Jay Leno told a national TV audience that CFS people did not show up for a CFIDS rally because they were too tired. Bryant Gumble told TODAY Show viewers that CFS does not exist.

That's why CFIDS Advocacy is needed.

SELF magazine , American Greeting Cards ,The Boston Globe , NBC News, People Magazine, the New York Times, the Wall Street Journal, political cartoonist Doug Marlette, and Chip Boc all needed to be educated about CFIDS and we, the advocacy people, did that effectively.

That's why CFIDS Advocacy is needed.

Mel Karasik has been a PWC since March 1993. Sudden onset of CFIDS eliminated a successful Life and Health Insurance sales career. Frustrated with the lack of understanding of CFIDS by most people, a desire to educate and inform was born. The South Florida CFIDS Advocacy Group began in 1995 and evolved into the Florida CFIDS Association on May 12, 1997.