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.
Creator and Co-host
I'm delighted to be able to tell you that because of your support, I've been able to produce a new video for ME/CFS Alert on YouTube. It's an interview with the nation's top expert on viruses, Dr. Ian Lipkin of Columbia University.
Recently, Dr. Lipkin's research on Myalgic Encephalomyelitis has received support and recognition from the National Institutes of Health. He is directing one of the four new NIH-funded centers that will be investigating the disease.
Dr. Lipkin is one of our champions. I've attached the video, which has been enthusiastically received in the ME/CFS community.
As always I wish you the best, and thank you so much for your support of this work.
I'm very glad to report that ME/CFS Alert Episode #93, telling the story of Tom Camenzind and his parents heroic fight for a cure for ME, has now reached more than 3,500 views on YouTube.
The latest episode, #94, represents an important breakthrough because it is the first time we have filmed inside the National Institutes of Health. In this episode, I interviewed Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders, and Dr. Zaher Nahle, chief scientist and vice president of research at the Solve ME/CFS Initiative. The initiative was instrumental in this filming.
Coming up is a very important interview with Dr. Ian Lipkin, the nation's foremost virus hunter and one of the leading ME researchers. This will be filmed in Dr. Lipkin's office in the Mailman School of Public Health at Columbia University.
Your support keeps this effort going.
I am writing to let you know that there is a new episode of "White House Chronicle," my television program, which aired this weekend.
It is very special and harrowing, too, because it features Tom Camenzind, who is paralyzed by ME and can only communicate with his parents through sensors attached to his fingers.
His parents, Dorothy and Mark, are saintly people who welcomed me and a small crew into their home in San Ramon, CA to film their son and to share their struggle and their suffering with the program's viewers and listeners.
I owe thanks to Carol Head and her dedicated staff at the Solve ME/CFS Initiative: They made this possible in every way. The filming and editing was done by Darren Williams of Hawkeye Productions. It was produced by my wife, Linda Gasparello.
I am grateful to all who made it possible, but mostly the Camenzinds for their courage, grace and advocacy.
Please share the video as widely as possible.
I've just posted a somber video on ME/CFS Alert on YouTube of Tom Camenzind, age 23, who lies immobile in his parents' home in San Ramon, CA.
My interview with Mark and Dorothy, Tom's parents, and Carol Head, who leads the research charity Solve ME/CFS Initiative, is testimony to why we all fight for a cure for this disease. The visit was facilitated by the Solve ME/CFS Initiative.
Thank you Llewellyn and associates for not forgetting us, and for letting the world know about ME while we often cannot. We long for the cure. We also look forward to the time when the CFS moniker is dropped, a term for a completely different condition, a psych condition, that was convenient for the insurance companies and government to hang on ME patients in the beginning. They did likewise to diabetics in the beginning. Thanks to anyone considering helping with this mysterious immunological and neurological disorder that has robbed millions of their lives.
Thank you for all you do for us suffering MECFS.
why oh why cannot people sort this name out they are two different problems me is myalgic encephalomyelitis and cfs is invented to explain a sick building syndrome caused by many factors not the lest an attempt by the cdc to create confusion to save millions of dollars in welfare payments
Thank you for caring about this "invisible disease". I suffer immensely with this, and it is difficult to keep hoping for relief.