Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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ME/CFS: Into 2012 without Cure or Care

Discussion in 'Action Alerts and Advocacy' started by Ember, Jan 2, 2012.

  1. Ember

    Ember Senior Member

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    This scourge, this foul and stealthy confiscation of life, is so little understood that there's even confusion about its name.

    Wanted: A high-energy, high-profile celebrity to do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. Fox is doing for Parkinsons: raising concern, raising money and banishing stigma. Fox has raised $264 million for Parkinsons. By contrast, the Chronic Fatigue Immune Deficiency Syndrome Association targeted raising just $2 million for research last year."

    http://open.salon.com/blog/llewellyn_king/2012/01/02/mecfs_into_2012_without_cure_or_care



    JANUARY 2, 2012 2:18PM

    ME/CFS: Into 2012 without Cure or Care

    By Llewellyn King

    It's an indecent disease, shrouded in mystery, endless in suffering, in stigma and in despair. It's a life sentence and many of those who are afflicted take their own lives, according to patient advocates.

    Witness this e-mail I received from a woman on New Years Eve: Today, December 31, is my birthday. I will not get to eat out, have a party tonight. ... I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.'

    This scourge, this foul and stealthy confiscation of life, is so little understood that there's even confusion about its name.

    In the United States, the disease is known as Chronic Fatigue Syndrome (CFS): a bland and trivializing nom de plume bestowed on the disease by the Centers for Disease Control in Atlanta. Elsewhere in the world, it's known as myalgic encephalomyelitis (ME). American patients tend to use both names and the acronym ME/CFS.

    I've been writing about ME/CFS for three years. But in more than 50 years of journalism, I've never had so much reader response. So many cries from the heart. So much gratitude for doing so little.

    The disease is socially ecumenical and afflicts an estimated 1 million people in the United States and 17 million worldwide. I hear from a great cross section of the ME/CFS community who have access to a computer and are well enough to use it. There are many sufferers who aren't well enough to e-mail; they're severely debilitated and bedridden for months and years.

    Deborah Waroff, a colleague of mine from the 1970s, who's been sick for more than two decades, describes a period of total disability she suffered in 2003 and 2004, when she lay on her apartment couch too sick even to watch television, as lying in your own coffin.

    There is no known route to infection, no diagnoses and no cure. Research has been scattered and funded grudgingly at such low levels that Dr. Fred Volinsky of Boston has calculated annual federal funding for ME/CFS at only $1.25 per patient compared to $400 for multiple sclerosis.

    Last year was especially sad because many patients and some researchers had pinned their hopes on a retrovirus called XMRV. Most of the work on this line was done at the Whittemore Peterson Institute in Reno, Nev., a private research facility founded by the Whittemore family. It now appears that promising conclusions were the result of laboratory contamination, and a paper in Science magazine had to be withdrawn. Worse, there's an ugly dispute between the institute and its former chief research scientist Judy Mikovits. Because there's low-level contagion in families and cluster outbreaks of ME/CFS, the idea that there's a virus at work can't be discredited entirely.

    There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth.

    As doctors have no diagnostic procedure for ME/CFS, they dismiss it as imaginary, psychosomatic or sloth. Families believe the disease is sloth: Sons have written to me because their fathers disowned them, believing that they are just layabouts.

    Some sufferers are homeless, according to Dr. Leonard Jason of DePaul University, abandoned to life on the streets. He tells of one unfortunate living in a car.

    Hospital emergency rooms have no tools, no knowledge. In the frenzy of the just-in-time nature of emergency room medicine, there's no care there for ME/CFS victims. There's precious little in the way of charity funding or home visits, unless the patient has family support they are on their own, alone.

    A cure this year is unlikely, but better understanding can start today. Now.

    Wanted: A high-energy, high-profile celebrity to do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. Fox is doing for Parkinsons: raising concern, raising money and banishing stigma. Fox has raised $264 million for Parkinsons. By contrast, the Chronic Fatigue Immune Deficiency Syndrome Association targeted raising just $2 million for research last year.

    Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly.
     
    Snow Leopard likes this.
  2. Ember

    Ember Senior Member

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    Hard-hitting as usual, Llewellyn King doesn't stop at discussing the name. He names the stigma, one that's probably more taboo in our culture than the stigma in AIDS.

    Sadly for us though, we have no shared pride, and our claims to lost dignity fall on deaf ears. So what are the chances that the voiceless victims of ME/CFS will be heard, even faintly in 2012, if indeed our medical status (not as chronically ill, but as chronically sick) tars us with sloth?

    Mr. King describes his role as doing so little, but he does us a service here in calling a spade a spade.
     
  3. Ember

    Ember Senior Member

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    On the strength of this article, a friend of mine in LA suggested that we contact the agents of celebrities to see if theyre interested in raising concern, raising money and banishing stigma for ME. Is there any merit to this suggestion?
     
  4. kurt

    kurt Senior Member

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    Julie Andrews' late husband Blake Edwards tried and failed to raise money for CFS, and he had CFS. But who knows, maybe there is a celeb out there today who would take on an impossible challenge like this.
     
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I didn't know that. Would Julie Andrews be our friend today?

    Wikipedia says Edwards directed "I remember ME", a documentary about the Disease, and that the narrator Kim Snyder got the Disease while working with Jodie Foster. Would Jodie Foster be our friend?
     
  6. Enid

    Enid Senior Member

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    Sounds a marvellous idea Willow - Julie Andrews was born in the UK and the situation is pretty dire here (apart from being global) - quite a cause.
     
  7. dannybex

    dannybex Senior Member

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    He was just interviewed for the film, he didn't direct it. Also he supposedly had several remissions, according to Hilary Johnson's 'roll call'.

    I hate to sound cynical or rude, but if Andrews never spoke up about CFS for the last 28 years, when her husband was alive, I wouldn't hold your breath waiting for her to do so now. I've seen her interviewed dozens of times, and never, ever mentioned her husband's struggle, even when asked questions about him...

    But someone must know someone, a beloved celebrity, who WOULD be willing to step up and bring attention to ME/CFS.

    Just my two pennies,

    d.

    p.s. And off topic, but not exactly: One thing that always puzzled me about "I Remember Me" was that Kim Snyder interviewed a group of women who were part of the Punta Gorde outbreak, who had not only survived, but had recovered.

    Sure, it was only a half-dozen or so, but she never asked them how they accomplished this, so while there may have been no official 'cure' even back then (and I don't personally think there will ever be "one single cure for all"), clearly these women recovered, and it would've been interesting to hear their stories...would've been inspiring...IMHO. :)
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    My bad; I double-checked and Wikipedia said what you said. I guess I just made that up about him directing it! :)

    That was my first thought, and it's possible nothing has changed. But it's also possible that with the slowly-changing political climate (we have two more journalists and a few more scientists on our side; which is not a lot, but some of them are important scientists), she might feel more bold about this. In my better moments I'm an incurable optimist. I promise not to hold my breath, though! I have little enough of that as it is. :D

    interesting... I would like to hear about that, too
     
  9. Sushi

    Sushi Senior Member Albuquerque

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    There is always Greg Page (Yellow Wiggle) who had to give up his Wiggles career due to dysautonomia. He has done some advocacy in Australia but I don't think he identifies his dysautonomia as part of the ME spectrum.

    Any one in Aust know him? He certainly is famous to anyone who has children or is from Australia.

    Sushi
     
  10. jonnyboy

    jonnyboy

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    I bet they didn't use the lightning process!!! lol
     
  11. jonnyboy

    jonnyboy

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    On another note didn't Cher and Michael Crawford both have ME/CFS, maybe they could both champion our cause?
     
  12. Ember

    Ember Senior Member

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    Do you think Cher would or could champion our cause? This seems like a promising quote:

    "
    Back then, the article drew this comment:

    This quote also shows promise:

    Perhaps she could be persuaded to avoid comments that celebrate a positive attitude. These could be used, by implication, to "blame the victim:"

    Any thoughts?
     

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