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Stony Brook's Friedberg on $600,000 Grant for Studies in Chronic Fatigue Syndrome

Discussion in 'Active Clinical Studies' started by Ember, Oct 31, 2011.

  1. Nielk

    Nielk

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    Keep on dreaming!
  2. xchocoholic

    xchocoholic Senior Member

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    Hi nielk,

    Sadly, I've been waking up from thinking medical professionals were Gods, for at least 6 years now. My biggest clue was the fact that they don't look for nutritional deficiencies .. Not even in celiacs.

    I just thought they were ignorant (due to med school training) but dr friedberg appears to be making a career move here. In the etiology section of the iacfsme website, they describe me/cfs well but not in details that would help doctors or patients find the cause of their me/cfs. I'm assuming he read that section ...

    Tc ..x
  3. Andrew

    Andrew Senior Member

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    What's wrong with taking about CBT. We do it all the time. Maybe people should read what they said about CBT.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi andrew,

    My point was that we have cbt, the spoon theory, the program where people are wearing heart monitors to determine their threshold, etc. so we don't need any more info on how to manage our lives.

    We need the money for biological studies. We have some great studies by individuals, rich, myhill, kdm, lapp, montoya, etc .. going but we need to expand on these. And from the looks of dr friedberg.s background he should know this .. I had no idea he was the president of the iacfsme when I read this article. Was that mentioned in the article ? I'm using my tablet right now so i'll check in a sec ..

    Tc ..x
  5. Andrew

    Andrew Senior Member

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    We have biological theories too. The idea of a study is to review something in a systematic way and see how often (if at all) it actually works. And the only studies we seem to get in the activity management areas are the Oxford style ones that don't even study the correct syndrome.

    Admittedly, I would rather see biological studies. But I also see some value in a managements style of study that is not based on UK politics.
  6. floydguy

    floydguy Senior Member

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    Sorry still think it's a waste of time. Everybody is different in the activity area. One size fit all studies do not work and may never work. Best for patients to experiment on their own and report on sites like this what is working and what isn't - perhaps based on some dx profile. 10% of NIH funding going towards such vague things like "reducing" stress is ridiculous and self-evident. We don't need pretty leather bound reports for such work. "Messy" self reports are much cheaper and possibly more effective. In this economic environment and with so little funding currently available "some value" just doesn't cut it, IMHO.
    Nielk likes this.
  7. Ember

    Ember Senior Member

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    The study has some catching up to do on ESME's recommendation!

    We recommend that:
    Researchers use the ICC exclusively and call the disease ME in all written documents about their research (http://esme-eu.com/home/new-criteria...icle514-6.html).
  8. Andrew

    Andrew Senior Member

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    I don't see any one size fits all claims in the IACFSME site or in the study design. I also don't see it saying they are going to do stress management.
  9. Nielk

    Nielk

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    It's my bolding from the explanation of what the study will include.
  10. Andrew

    Andrew Senior Member

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    Thanks, I see now that stress management is part of it.
  11. Hope123

    Hope123 Senior Member

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    Thanks for the gracious words, Nielk. Ultimately, you and I are on the same side -- we all just want to get well and get back to life.
    Nielk likes this.
  12. Nielk

    Nielk

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    Exactly. Well said. Thank you.
  13. Daffodil

    Daffodil Senior Member

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    hi all. could someone help me out? i am confused ..which study results will be out at end of 2011/early 2012? is that the lipkin xmrv study? is that still going on? is it the deep sequencing lipkin/hornig study?

    thanks a lot
  14. WillowJ

    WillowJ Senior Member

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    hi Daffodil,
    you can read about the status of the Lipkin study from Dr. Lipkin here (yes, it is still ongoing).
    heapsreal has started a thread to collect ongoing studies here
  15. WillowJ

    WillowJ Senior Member

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    and Oceanblue talks about the Lipkin/Horning study here

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