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Dear Friends,
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.
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.
Or you can send a check payable to ME/CFS Alert at this address:
Kind regards,
Llewellyn
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