Journalists do not expect thanks for their work. But in my 62-year career as a journalist, I have never received such an outpouring of thanks -- hundreds of emails -- as for the syndicated columns, radio and television programs that I have devoted to an understanding of Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
These profound thanks from sufferers in the United States and around the world inspired me and Deborah Waroff to launch ME/CFS Alert
, a YouTube channel, in June 2011. The channel has become a lifeline for them -- many of whom are bedridden -- and for their caregivers, advocates, doctors and medical researchers.
There is no cure for ME, and there are no established therapies. There is just a lifetime of pain, dependence, disorientation, loneliness and unremitting suffering. The horror of this disease strains my ability to describe it.
Like all chronic diseases, ME is brutally unfair to the afflicted. But it also can claim to have been unfairly treated by doctors, medical researchers, pharmaceutical giants and politicians, who control the flow of funding to the National Institutes of Health and the Centers for Disease Control, the nation’s medical research and health protection agencies. Research into ME has been grossly underfunded for years.
The first ME/CFS Alert episode featured commentary by co-host Deborah Waroff, a New York author who has battled ME for 29 years. It also featured an interview with Dr. Derek Enlander, a pioneering researcher in therapies for ME.
The aim of ME/CFS Alert is to comfort the suffering, educate the doctors, and to shame the government into allocating more research dollars. There are more than 100 informative videos on the channel, consisting of interviews with doctors, medical researchers, patients and advocates, made possible with a $20,000 GoFundMe startup campaign.
But to continue making ME/CFS Alert videos, I seek your financial assistance. Any amount you wish to contribute will go directly into making these videos as helpful as possible to everyone afflicted with ME -- a disease which I have described as "hidden in plain sight."
I want ME/CFS Alert to continue to be a place where patients can learn about other patients living with the disease, advocacy group efforts, treatment options and medical research. And I hope it will be a place for the public to get to know, as I have come to, this valiant community.
If you know someone with this disease, you will know why I have given so much of my time and assets to it. I hope you can contribute to ME/CFS Alert.
Creator and Host
ME/CFS Alert on YouTube