From Llewellyn King.
I believe that there is a permanent social crisis: people who are sick but hidden in plain sight. People who bear perpetual disease with fortitude while living their lives on a separate track from the healthy — a parallel but not equal existence.
Driving this belief is my work on behalf of those who suffer day in and day out from a disease which gets little recognition but has millions of sufferers all over the world. It is Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS).
Helping those afflicted has become a major concern of mine.
I became involved when I learned some years ago that a friend, Deborah Waroff, had been floored by the disease. When I met up with her after 35 years, I was shocked to learn details of this awful, debilitating disease.
It is a disease which confiscates the total being of its victim, channeling it to an existence of fatigue, pain and brain fog — a life of bare existence.
You might say sufferers are allergic to exercise, even to normal activities. A small amount of exercise can condemn a patient to days of bed rest, sometimes with aching joints and migraine-type headaches.
Deborah has to weigh a night out with friends at the theater against two days in bed with an exhaustion that is not terminated by sleep.
In some cases, patients endure extreme sensitivity to light and sound. I know of one young man who had to spend months in a closet, the darkest, quietest place in his apartment.
The most severely afflicted are permanently invalided.
There is no cure, just a few therapies to alleviate symptoms. A young man working in Atlanta takes 19 pills, but it is unusual that he is able to hold down a job.
It is a life sentence which has resulted in frequent suicide.
Having learned about ME (a disease which knows no age limits, gender, economic status or race), I wrote a column. The result was
extraordinary. I received dozens of emails from around the globe, people who said thank you in a hundred ways. So I wrote more columns and received more thanks, heart-rending thanks from people who had believed the world had given up on them.
I suggested to Deborah that we launch a YouTube channel for patients, doctors and researchers. We did that and now, six years later, there are 96 episodes of ME/CFS Alert on YouTube. Also, I filmed five episodes of my PBS program “White House Chronicle” on ME.
Subscribe to the World's Most Popular Newsletter (it's free!)
The purpose was simple and I have not deviated from it: Comfort the sick, educate the doctors and shame the government into allocating more research dollars.
To make the videos, I have traveled with a small crew across the country several times, interviewing the sick, doctors and researchers. We have filmed in sick rooms, Columbia’s Mailman School of Public Health, the Harvard Medical School, the National Institutes of Health and Simmaron Research in Incline Village, NV, where a cluster outbreak of ME occurred in 1984.
The response to the videos has been an inspiration. Here are a few ME/CFS Alert viewer comments:
“Thank you for being our voice.”
“I am living a death instead of a life. Composing this will have exhausted me cognitively, and I will be unable to remain awake. I miss my child. I miss my family. I miss the outdoors. I miss my home in the Alaskan bush that I had to give up when I became too ill to get through the rigors of the Arctic winter. I am being treated for the symptoms … it is not a cure. It does not allow me to rejoin the human race.”
“Thank you for continuing with the struggle. It gives us hope that we can continue, too.”
It is a labor of love for me, but there is expense. From the beginning people, especially my friends, have contributed generously to ME/CFS Alert. But contributions are falling behind production costs, hence this appeal.
I hope you can help. For myself, this is the most important work I have done in a long journalistic career. You can view the videos at
Or you can send a check payable to ME/CFS Alert at this address:
ME/CFS Alert Appeal
125 Providence St., Suite S302
West Warwick, RI 02893