Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Update: New, if Belated, Gov't Interest in CFS Encourages Patients

Discussion in 'General ME/CFS Discussion' started by BurnA, Jan 2, 2016.

  1. BurnA

    BurnA Senior Member

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    Dolphin, Ritto, jimells and 14 others like this.
  2. Mary

    Mary Senior Member

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    @BurnA - good article! Thanks for posting --
     
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  3. L'engle

    L'engle moogle

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    Wow, that is a good article! And it heads up with the cognitive debility, not the other thing. Impressive.
     
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  4. Bob

    Bob

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    Great article.

    Interesting little snippet:
     
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  5. BurnA

    BurnA Senior Member

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    Yes , also interesting that they will share all their results online and with the NIH.
     
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  6. Simon

    Simon

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    New piece from Shannon Firth at Medscape, features Jen Brea, Ron Davis, IOM report, Brian Vastag's letter, NIH funding and more:
    Update: New, if Belated, Goverment Interest in CFS Encourages Patients | Medpage Today


    Starts with Jen Brea's story, and her problems with diagnosis that may be familiar to many
    The NNIDS in-house clinical study of patients who started mecfs recently after an infection is run by Avnidra Math, MD, who it turns out has quite a CV:
    Ron Davis and the Severely-ill study

    Jen Brea, on a big reason for the lack of progress:
     
    Last edited: Jan 3, 2016
    biophile, alex3619, Scarecrow and 4 others like this.
  7. Sasha

    Sasha Fine, thank you

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    Very interesting article.

    Hope for all of us there.
     
  8. Sidereal

    Sidereal Senior Member

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    It's Medpage not Medscape.
     
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  9. BurnA

    BurnA Senior Member

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    Simon likes this.
  10. Snow Leopard

    Snow Leopard Hibernating

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    What Jen said!
     
  11. JaimeS

    JaimeS Senior Member

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    "It's really hard to find an answer for something, when you're not looking."

    Oh, Jen. :(
     
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    Simon likes this.
  13. Denise

    Denise Senior Member

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  14. Kina

    Kina

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    The threads have been merged. Please report duplicate threads via the "Report" post button. :)
     
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  15. alex3619

    alex3619 Senior Member

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    An analogy I like to use is you cannot diagnose a brain tumor with just a stethoscope. You need the right tools. One of our big issues is, I think, that until relatively recently the high throughput gene and transcriptome sequencing, and large scale mass spec, plus who knows what else, were either not available or too expensive. That changes over time. When the right technology comes along we find answers. It looks very much like we might now have the technology to unravel the mystery.

    Yet its also the case that three well known, well understood, widely taught, and usually available (though with travel) tests were developed in the 1940s and are applicable to ME and CFS. I am willing to bet that only a small minority of 1% of the medical community even use them, or know to use them, in ME and CFS. They are still using those stethoscopes to rule out brain tumors.
     
    A.B. likes this.
  16. Denise

    Denise Senior Member

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    Thank you for merging the threads. And thank you for letting me know that the report button can be used for such things. (I had never really focused on it (sorry) and thought it was for reporting forum misuse.)
     

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