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How the government bought off the advocacy movement

Discussion in 'General ME/CFS News' started by RustyJ, Jan 2, 2013.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Thanks for taking the time to write this. Maybe we should have a new term -- "Wesselyesque".



     
    Valentijn likes this.
  2. DaiWelsh

    DaiWelsh

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    I think you must qualify as the Witch King of Angmar surely? ;)
     
  3. satoshikasumi

    satoshikasumi Senior Member

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    I don't think patients universally embrace Osler's Web as our history, but it is one of the only narratives out there. Almost all works of history reflect the cultural bias of the historian. I think the author of Osler's Web did a decent job considering that she is not a historian of science. She was also ill to a degree when she wrote the book.

    I see Osler's Web as an American political history of ME/CFS, modeled on the story of the early days of AIDS told in "..And the Band Played On".

    The scientific history remains to be written. A collaborative work that accounts for the changes in scientific thought (i.e. the evolution of different paradigms) over the decades would be best. I expect this to be written when some of the major researchers go into semi-retirement.

    I understand why professionals might see Osler's Web as somewhat degrading, as it portrays scientists as mere puppets in a political scheme.

    In reality, the widespread view that ME/CFS must be psychological has more to do with the fact that it did not fit in with our late 20th century understanding of the human body. Medicine believed it had a fairly complete typology of diseases.

    As Alan Light has pointed out in "Translational Pain Research", while scientists have long understood a lot about what caused muscles to fail when exercise, their understanding of the human experience of pain, fatigue, and the feeling of being ill is relatively primitive, and the ability to measure these phenomena even in animals is quite recent.
     
    barbc56 likes this.
  4. Mattman1

    Mattman1

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    I have to agree with this- nature is inherently complex, making the propensity for problems great, and some of those problems themselves will be exceedingly complex. So because nature itself is not beholden to whatever the current medical/scientific understanding is, it should not be surprising under this context that effective treatments for diseases take as long as they do, and that the inner mechanisms of a disease such as ME/CFS can elude Traditional diagnostic methods as they do. The good news is, these failures reflect a current Scientific understanding of disease that has long been unsustainable for certain diseases such as ME/CFS, and as posted here recently, new understandings are all but inevitable given enough time-- the difficulty has always been, and will be, for those that are forced to endure during these 'interesting' times. The freaking Calvary can't get here soon enough!
     
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  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Ah, my online identity fully exposed : Witch King and the real world reality: IVI at home
     
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  6. Nielk

    Nielk

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    IVI at home looks scarier to me.
     
  7. Jarod

    Jarod Senior Member

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    planet earth
    I don't know what the answer is, but allow me to make an observation.

    We have a seriously flawed system that has been subverted because of the "belonging" principles you are highlighting. Sure having everybody involved is good in concept, but the reality is much different. Most people form their opinion from TV, Hollywood, or the New York Times.

    Most people are very poorly informed and incapable of sorting through the facts. For each good study or piece of news, there is ten pieces of garbage to sort through in todays world. The money and the media hijacks the debate.

    Most people don't have the time or inteligence to sort it ll out. We have an open system that is subverted because of this western style open democracy meme sold around the world. Which would be fine if everybody could make good decisions.

    So with everybody getting a say, and with Hollywood and TV(or in medical news substitute: Science Media Centre, Wellcome Trust, Lancet, etc) controlling the debate. The end results speak for themselves.

    And if you want to argue the results and intentions have be genuine for decades, please provide project management charts(Gant Charts) with goals and milestones to support your view.
     
  8. Jarod

    Jarod Senior Member

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    So much can be traced back to the early 80's. Its quite amazing....

    creeping-higher.jpg

    prison chart.jpg

    health%20spending.jpg
     
  9. alex3619

    alex3619 Senior Member

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    Hi Jarod, this timeperiod saw the rise of economic rationalism. Money can be saved by slashing waste, but not everything that gets slashed is wasteful. If its just underappreciated then it can get slashed anyway. It also saw the rise of more right wing government and attitudes. Greed is good and all that. I have not really made a study of any of this, its just an observation, but its a concerning one. This timeperiod also saw the rise of psychosomatic medicine. So I am trying to see these things as a backdrop for how psychosomatic medicine suddenly became more appealing after decades of decline. Engel's paper that drives BPS ideology was the late 70s iirc. Bye, Alex

    PS I think I need to be clear that my opposition to excessive economic rationalism is not about free markets - its about government trying to act as though it were a business. Government is not a business, its role is different.
     
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  10. Jarod

    Jarod Senior Member

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    planet earth
    Thanks Alex,

    Back in the 70's the Lewis Powell Memo was written, and outlines a conspiracy between business and government.

     

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