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Chronic fatigue syndrome recognized at last: San Francisco Chronicle

Discussion in 'General ME/CFS News' started by Ecoclimber, Nov 9, 2015.

  1. Ecoclimber

    Ecoclimber Senior Member

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    San Francisco Chronicle
    Chronic fatigue syndrome recognized at last

    By Rivka Solomon
    November 9, 2015 Updated: November 9, 2015 4:40pm
    [​IMG]
    Photo: Charles Dharapak, Associated Press
    National Institutes of Health Director Francis S. Collins has promised to “ramp up” funding for research into the causes and potential treatments for chronic fatigue syndrome.

    After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure. Thanks to years of prodding by patient advocates, the National Institutes of Health now understands myalgic encephalomyelitis is a serious disease that brings significant functional impairment. Though this is a welcome breakthrough, we need help to create real change for these often ignored patients.

    The rest behind a subscription wall:

    (Interesting the journalist left off chronic fatigue syndrome in my bolded mark above)

    -
     
    ahimsa, Esther12, Mij and 20 others like this.
  2. RivkaRivka

    RivkaRivka Senior Member

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    Here is the full piece. It is a San Francisco Chronicle Op-Ed piece -- i.e. an opinion piece. It is now online, and it will be in print tomorrow.

    - Rivka
    _____

    http://www.sfchronicle.com/opinion/...tigue-syndrome-recognized-at-last-6620617.php

    Chronic fatigue syndrome recognized at last
    By Rivka Solomon

    After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure. Thanks to years of prodding by patient advocates, the National Institutes of Health now understands myalgic encephalomyelitis is a serious disease that brings significant functional impairment. Though this is a welcome breakthrough, we need help to create real change for these often ignored patients.

    For me and my mother, this government recognition is both personal and political. After a bout of mononucleosis decades ago, I never returned to a normal life. The mono morphed into myalgic encephalomyelitis, as it has with many other patients. Ultimately, I struggled with exhaustion and cognitive confusion so crippling I had to abandon both my career and social life. My mom watched helplessly as I spent much of my 30s and 40s in or near bed, grieving over lost dreams.

    With no generally accepted diagnosis and no treatments sanctioned by the Food and Drug Administration, we hoped our government’s huge $30 billion National Institutes of Health budget would come to our aid.

    No such luck.

    Year after year, the government dedicated a meager $5 million to chronic fatigue syndrome research. That’s less than what hay fever research gets — and hay fever doesn’t make you too weak to work for years on end.

    Even worse, much of this research psychologized, delegitimized and marginalized the disease. That, coupled with the government-imposed stigmatizing name of “chronic fatigue syndrome” (who isn’t tired? Take a nap, go to the gym, snap out of it!) has permitted doctors, the media, the public and even families with sick loved ones to brush off patients as malingerers who refuse to pull it together. This has resulted in harmful (or no) medical care and ill patients being abandoned by families.

    Fed up, we organized a demonstration in 2011 at the San Francisco Federal Building’s Department of Health and Human Services. Many patients are too sick to take to the streets to demand change, so others, including my mother and some tenacious patients, unfurled a 25-foot-long homemade banner demanding Health and Human Services stop neglecting myalgic encephalomyelitis.

    The news that the government finally would help us swept through the patient community, resulting in shock and tears of joy as well as deep sadness over the years lost. There was also skepticism because the announcement did not come with a dollar figure. The director of the National Institutes of Health said the funding will be substantially greater than it is currently.

    We say research for this disease must be funded at a level commensurate to its burden. Multiple sclerosis, another neuro-immune disease, with its 400,000 U.S. patients, gets $102 million each year. Myalgic encephalomyelitis, with its more than 1 million U.S. patients, should get funding equity.

    To achieve this, we need to see democracy in action: We urge everyone to contact their congressional representatives; ask them to insist that the National Institutes of Health dedicate $250 million per year to this disease. One million previously ignored, disabled Americans will be grateful.

    Rivka Solomon is working on a book about her 25 years with myalgic encephalomyelitis/chronic fatigue syndrome. She created a women’s empowerment program, That Takes Ovaries. She and her mother, Bobbi Ausubel, co-wrote a play of the same name.
     
    Last edited: Nov 10, 2015
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  3. Sushi

    Sushi Senior Member Albuquerque

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  4. RivkaRivka

    RivkaRivka Senior Member

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    @Sushi does that link allow people to see the full article?
     
  5. Sasha

    Sasha Fine, thank you

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    I tried to post a comment but don't have the right sign-ins (Facebook, g+, etc.)

    Would someone like to post this comment, if they agree with it?

    Please join the campaign for funding equality for myalgic encephalomyelitis/chronic fatigue syndrome as Rivka Solomon asks.

    It’s easy to do via this petition and letter to Congress, which already has over 2,000 US signatories and over 3,000 supporters worldwide:

    http://www.meaction.net/funding-equality-petition/

    It’s time that this disease was treated on an equal per-patient funding basis with other diseases of similar severity, such as multiple sclerosis.

    Over a million Americans and 17 million patients worldwide need help.

    Please sign!​

    Great article, @RivkaRivka!
     
    Jennifer J, RivkaRivka and SOC like this.
  6. RivkaRivka

    RivkaRivka Senior Member

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    @Sasha -- shoot, i forgot to make that my first post in the comments section. i was so brain dead and exhausted by the time it went up. thank you for reminding me again. so i just posted it in the comments section. thank you again!
     
    Jennifer J, rosie26, Kyla and 5 others like this.
  7. Sasha

    Sasha Fine, thank you

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    Terrific - thanks, Rivka! You're doing a great job with this.
     
    RivkaRivka, Jennifer J and Kyla like this.
  8. Sushi

    Sushi Senior Member Albuquerque

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    It does for me, maybe others could say whether it does for them.
     
    RivkaRivka and mango like this.

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