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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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3/2/2014 - Article Written By Llewellyn King About ME/CFS and the HHS/NIH

Discussion in 'General ME/CFS News' started by Wally, Mar 2, 2014.

  1. Wally

    Wally Senior Member

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    http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/

    The Strange Case of NIH and an Elusive Disease


    By Llewellyn King


    The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.


    So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.


    According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.


    ME/CFS takes healthy -- often athletic -- people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.


    It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, “With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie.”


    From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.


    One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.


    But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.


    Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.


    To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.


    The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.


    So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.


    Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.


    There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, “first do no harm.” When people are in pain and despair, inaction is palpable harm.


    A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them.


    Llewellyn King is executive producer and host of “White House Chronicle” on PBS. He is the creator and co-host of ME/CFS Alert on YouTube. His e-mail islking@kingpublishing.com.




    Llewellyn King
    Executive Producer and Host,
    "White House Chronicle" on PBS;Columnist, Hearst-New York Times Syndicate;Commentator, SiriusXM Satellite RadioMobile: (202) 441-2702Web Site: whchronicle.com
    Last edited: Mar 3, 2014
    Simon, vli, heapsreal and 12 others like this.
  2. NK17

    NK17 Senior Member

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    @Wally
    Please extend my heartfelt thanks to Mr. King for his passionate reporting on behalf of all PWME.
    And a big thank you to you Wally :hug: we are in this together.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Wally

    Thanks for posting this. Did it appear in the White House Chronicle? The link to the White House Chronicle seem to be down.

    Sushi
  4. SOC

    SOC Moderator and Senior Member

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    Link directly to the article
    Please click through to the article so that he gets lots of hits. Commenting there would be good, too. ;)

    ETA: This link does NOT work.
    Last edited: Mar 3, 2014
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Funny, Chrome gives me a "Webpage not available" message.
  6. SOC

    SOC Moderator and Senior Member

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    Weird. When I click on the link, it flicks to that page, then gives me "Something went wrong when displaying this webpage". Maybe something wrong with the webpage at the moment?

    I got to it originally by clicking on the www.whchronicle.com link and then searching for the title.
  7. taniaaust1

    taniaaust1 Senior Member

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    I couldnt find the article so ended up reading one of his old ones on ME/CFS in the popular part. His articles are always good.
  8. Wally

    Wally Senior Member

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    The article came directly to me from Llewellyn King with a request to distribute this to the ME/CFS community. I don't have a direct link to where the article appears, but I assumed it was published on the White House Chronicles website and in other publications if syndicated by the NY Times.

    If anyone has a working link, please let me know and I will edit the first post to add it.

    Thanks. Wally :cool:
    Last edited: Mar 2, 2014
    Valentijn likes this.
  9. Kati

    Kati Patient in training

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    It seems to me that the whchronices website is down at the moment. I certainly want t share on social media when it apears online. Thank you Llewellyn King
  10. Bob

    Bob

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    I don't think it's been posted on the White House Chronicle website yet.
    I can't find it on their website and I can't find it on Google anywhere except on Phoenix Rising.

    I don't think that's the correct article, SOC.

    That is a link to a 2011 article titled:
    Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood.
    Last edited: Mar 3, 2014
  11. Iquitos

    Iquitos Senior Member

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    Yes, please post a link when one becomes available.
  12. Wally

    Wally Senior Member

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    FYI - The link to this article is not yet available. The article is awaiting publication and as soon as there is a link it will be added to the original post.

    Wally
    Kati likes this.
  13. Ember

    Ember Senior Member

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    Here's the link.
    Bob likes this.
  14. Wally

    Wally Senior Member

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    Thank you. :) I have added the link to the top of my post. :thumbsup:
    Ember likes this.
  15. SOC

    SOC Moderator and Senior Member

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    Indeed it is! It really wasn't when I first posted it, though. Honest!:bang-head:

    My guess is that it isn't published yet, and therefore not supposed to be available. I caught it in pre-published form with a title search, but that's been fixed since. I suppose we wait for the official publication before we can look at it at White House Chronicles.

    ETA: Looks like Ember found the article. :)
    Bob likes this.

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