You may know about my work for a disease that is little understood, get scant attention and ruins the lives of all that it touches.
The disease is Myalgic Encephalomyelitis (ME), mostly called Chronic Fatigue Syndrome. It is a disease that afflicts 1 million Americans and a proportionate number around the world, according to some surveys. It is a vile affliction without a cure.
For the stricken, it amounts to a life sentence of confinement and pain. Victims are drained of all energy and suffer from muscular and joint pain, headaches and brain fog (known as dysphasia), sensitivity to light and sound. In the worst cases, people are bedridden -- sometimes for years.
The first symptoms are flu-like, often after exercise. After the onset, exercise becomes perilous: just a bit of exercise can knock a victim flat on his or her back for days. A necessary effort, like grocery shopping, or a pleasurable one, like eating out with family members or friends, can cause a victim's collapse.
I came to know of this disease because a friend, Deborah Waroff, was felled by it. I had not seen her in decades, but I had heard from mutual friends that she was "always tired." When we did see each other again in 2007, I was not prepared for the shock of that understatement.
The Deborah I had known in the 1970s breezed through Harvard and New York universities, moved successfully from a career in journalism to one as an analyst on Wall Street, and played squash on a competition level. That life for Deborah was over in 1989, when she was stricken with ME.
Cut off in its prime, her life has been reduced to a daily struggle with one or all of the symptoms of the disease, and where her every effort beyond the minimal is punished by pain and collapse.
I had to do something. I did what I do: I wrote a column about the disease.
That first column opened something that just does not happen to journalists: a floodgate of praise and thanks. Dozens of e-mails of thanks poured in from around the world. Thanks for writing; thanks for caring; and thanks for simply talking about this disease, which I called "hidden in plain sight."
So I wrote more columns, and I got more e-mails expressing thanks. I also filmed four episodes of my weekly PBS program, "White House Chronicle," on the disease.
Finally, I suggested to Deborah that I should create a YouTube channel on ME. The premise was simple: Comfort the sick, inform the doctors, and shame the government into putting serious money into research.
That was five years ago. Now there are 80 episodes posted on ME/CFS Alert on YouTube and more in preparation.
My work is profoundly gratifying, but it also costs money to do. That is why I am writing to you and other friends in the hope that you will help support the effort.
Here is a link to the 80 episodes on ME/CFS Alert on YouTube: https://www.youtube.com/user/MECFSAlert
From these three comments, posted on the ME/CFS Alert page, you can see how the channel has become a lifeline to the community of sufferers, caregivers and physicians:
I have only recently stumbled upon your channel and already it has helped me so much. My 13-year-old son has ME/CFS, with intractable constipation issues, and doctors don't seem to know what is causing it. But I know for sure they are not connecting the dots. They are treating two different conditions, despite both coming along at the same time. Oh, well. Thanks for your work and your advocacy. -- Episode 52
Thank you so much! I wish I knew how to explain what this video means to me. I feel understood, hopeful, validated and less alone. Thank you. YOU ARE IMPORTANT TO US. -- Episode 72
You are a true martyr fighting for us. You are the very best, and a man with true compassion. Thank you.-- Episode 80
Please, please help. You can make your donation through GoFundMe, the crowdfunding Web site, at https://www.gofundme.com/MECFSAlert
Executive Producer and Host,
"White House Chronicle" on PBS;
Contributor, The Huffington Post;
Columnist, InsideSources Syndicate;
Commentator, SiriusXM Satellite Radio
Mobile: (202) 441-2702
Web Site: whchronicle.com