An Appeal for Help with Llewellyn King's ME/CFS Alert videos

Here is a message I just received:
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An Appeal for Help with Llewellyn King's ME/CFS Alert videos:
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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.

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
https://www.youtube.com/user/MECFSAlert

If you can help, that would be tremendous. You can donate to ME/CFS
Alert on GoFundMe at https://www.gofundme.com/MECFSAlert/donate

Or you can send a check payable to ME/CFS Alert at this address:

Llewellyn King
ME/CFS Alert Appeal
125 Providence St., Suite S302
West Warwick, RI 02893

Kind regards,

Llewellyn

 

Thought I'd bump this with the GoFundMe link, https://www.gofundme.com/MECFSAlert

 

I highly appreciate Llewellyn's tireless work but his videos are usually not shareable because the sound is barely audible and need some editing work. It's mentioned in the Youtube comments nearly every time and it's sad because the content itself is very good but the presentation means very few outside of advocates will ever take the time to listen.

 

That might be a good reason to donate; help him get an editor maybe.