Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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An Appeal for Help with Llewellyn King's ME/CFS Alert videos

Discussion in 'General ME/CFS News' started by Dolphin, Feb 18, 2018.

  1. Dolphin

    Dolphin Senior Member

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

    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

    If you can help, that would be tremendous. You can donate to ME/CFS
    Alert on GoFundMe at

    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 King.PNG
  2. Sushi

    Sushi Moderation Resource Albuquerque

    For any newer patients who haven't followed this series of videos, have a look. Llewellyn King and Deborah Waroff have interviewed most of the clinicians and researchers who work with this disease. Many of the videos are posted here on PR but you will find them all on YouTube. It is a very valuable resource to hear directly from these doctors and researchers.

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