A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as “the living death” disease. The disease also is known by its old name — and the one favored by many patients — myalgic encephalomyelitis.
The program is called “M.E./CFS Alert” and can be accessed on the You Tube Channel ME CFSAlert. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program “White House Chronicle.”
The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.
“This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds,” Waroff said.
An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.
Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.
The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.
“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS,” King said.
The first program is an interview with pioneering M.E./CFS doctor Derek Enlander.