ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Fundraising for ME/CFS Alert
Friday 17 January 2014
Llewellyn King, journalist and creator the ME/CFS Alert series of YouTube videos, is asking for donations to help him continue making the videos.
Chronic Fatigue Syndrome Videos
Journalists don't expect thanks for their work. But in my 58-year career as a journalist, I've never received such an outpouring of thanks – hundreds of e-mails – as for the syndicated columns, radio and television programs that I've devoted to an understanding of Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some of these letters can be seen on my Web site, whchronicle.com.
These profound thanks from the sufferers in the United States and around the world inspired me to launch ME/CFS Alert, a YouTube channel, in June 2011. The channel has become a lifeline for the ME/CFS community -- many of whom are bedridden.
There is no cure for the disease; 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.
Knowing patients, I feel that I've looked into hell -- a hell that I can look away from, but they can't. Some have written to me that they pray for death; a high suicide rate is reported.
The first video episode featured commentary by Deborah Waroff, a New York author and the channel's co-host, who has battled ME/CFS for 25 years. It also featured an interview with Dr. Derek Enlander, a pioneering researcher in therapies for ME/CFS, who practices in New York City.
The aim of ME/CFS Alert is to comfort the suffering, educate the doctors, and to shame the government into allocating further research dollars. There are now more than 50 informative videos on the channel, consisting of interviews with doctors, patients and advocates.
But to continue to make these videos, I seek your financial assistance. Any amount you wish to contribute will go directly (not a penny toward administrative costs) into making these videos as helpful as possible to everyone afflicted with ME/CFS -- a disease which I've described as “hidden in plain sight."
I want ME/CFS Alert to continue to be a place for members of the ME/CFS community to learn about others living with the disease and medical research and treatment options. And I hope it will be a place for the general public to get to know, as I have come to, this valiant community.
If you know someone with this disease, you'll know why I've given so much of my time and assets to it. I hope you can make a contribution.
The above originally appeared here.
blog comments powered by Disqus