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Straus/Fukuda Letter: Goal of 1994 Definition Discussed

Discussion in 'Latest ME/CFS Research' started by C_Maupin, Mar 16, 2014.

  1. Esther12

    Esther12 Senior Member

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    I've only really read UK political stuff, and psychological CFS research. Also, I'm often really cautious about secondary sources, and don't come across much actually written by Strauss (which is one reason I was interested to read the letter). I've read a lot of patients being critical of Strauss, but I never saw stuff from him that was really bad.

    I just did a little google and found this summary of his work from Cort on PR (after saying how cautious I was with secondary sources, I've now decided to take all this as gospel, in order to save me the trouble of any real reading!):

    http://phoenixrising.me/archives/5349
  2. alex3619

    alex3619 Senior Member

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    I think key facts need to be examined again as new evidence comes to light. Reason requires constant vigilance.

    I am concerned that a pattern is developing, has developed, and is pervasive in modern politics. To borrow from Lakoff and Dawkins, I think we are seeing simplistic frames or memes. Say something that is trivially true. Use certain key words. Say it repeatedly. Then slowly shift the context. This is also a salesman's trick, and is one I was taught when I dabbled in selling insurance (and hated it) during my unemployed phase.

    Much of psychobabble does this. Its in part why I am writing my book, or trying to. I think that much of what is wrong in medicine is bad memes, twisted frames, or whatever you want to call them. This also pervades modern politics. Its all the same issue, but in different disciplines.

    Once these memes/frameworks are in place, you can lie with the truth. It sounds intuitively right, because intuition relies heavily on the instant mental response, and not reason. So any uncritical reading or listening can lead to snap judgements that are wrong, and over time these develop into a larger framework of distortions. Its something we are all at risk of. Nobody has the time or interest to read absolutely everything very critically.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What i dont understand is why would he do something like this? Was he payed off by insurance companies or pharma companies wanting to push antidepressants etc or just a total non believer. I just dont understand when u see a group of people suffering would u choose to ignore it totally, actually not ignore but push against it?? I can almost understand ignore as most who havent suffered a certain illness dont really comprehend i guess and have their own issues to deal with, but when in a job where one is suppose to help others and then works against those others, i dont understand.

    Judgement day comes to all i guess.
    or maybe better words, Kalmers a bitch;)
  4. alex3619

    alex3619 Senior Member

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    I really do think many of them think what they are doing is right. They believe they have the answer to helping us. They are not scientists, but they dabble in science. This is bad science, supported by vested interests. Now I do think some of those supporting all this may be aware of what's what, but how do you separate them from the true believers. An entire profession is convinced its way of doing things is right, and massive evidence to the contrary is still being ignored. I speak of course of psychiatrists.
    heapsreal likes this.
  5. Wildcat

    Wildcat Senior Member

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    A 1996 Primetime Report about CFS and the epidemics by Dr Nancy Snyderman. Not too long and worthwhile to watch .


    The Report includes interviews with Dr Paul Cheney and Dr Bell, also a short live statement by Stephen Strauss (in which he calls ‘CFS “subjective”), and also a dismissive written statement by Dr William Reeves…


    And also includes a very Interesting statement in the short interview with Dr Phillip Lee (Assistant Secretary for Health at the time): “…..I would say it is a virus or a retrovirus, I would say so”






    ‘CFS and the CDC's Failure to Respond: Primetime Live (1996)’

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    @ 12.44 – Hilary Johnson
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    Just after 6.50 is a very brief statement from Stephen Strauss at the NIH:

    “From my own research, I know this disorder is so subjective that patients will commonly feel better no matter what you give them”


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    The snippet from Dr Stephen Strauss is pretty ambiguous- because yes, many patients can improve (“feel better” is Stephen Strauss’s phrase) to some extent after time, yet still remain severely sick and definitely not recovered. Also the word “better” has two meanings ie “improved” or “recovered”.
  6. GalaxiiGrl

    GalaxiiGrl

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    Thank you for posting this. I posted the video on Facebook with the following statement (my words):

    This segment was broadcast on "Primetime Live" 18 years ago. The CDC has done nothing in that time to advance the field of knowledge of and treatment for ME/CFS. They have misspent already paltry funds that were earmarked for ME/CFS research, and subsequently lied about it. They continue to perpetuate the myth (that they created) that it isn't really a debilitating physiological illness. How has the CDC been allowed to treat the people who suffer from this devastating illness with absolutely no respect for such a long time?
    Valentijn, heapsreal and Wildcat like this.

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