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IOM & SEID - Jen Brea, Dr Ellen Clayton, Dr Enlander on NPR phone-in 10am Mon 16 Feb

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sasha, Feb 14, 2015.

  1. Sasha

    Sasha Fine, thank you

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  2. Nielk

    Nielk

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    From Canary in a Coal Mine https://www.facebook.com/canaryfilm

    Hi everyone! I will be appearing Monday morning live at 10am ET/7am PT on the national NPR show, On Point along with Dr. Ellen Wright Clayton, chair of the IOM committee, Dr. Derek Enlander of Mt. Sinai and Dr. Daniel Neides of the Cleveland Clinic.

    The show will discuss Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and the new name and definition for Systemic Exertion Intolerance Disease (SEID).

    It is a one hour, live call in show, so you can call in with your questions or comments during the broadcast. Here is how to call on point:http://onpoint.wbur.org/contact-on-point

    You can listen to the live broadcast online here:http://www.wbur.org/listen/live

    Or find the broadcast time on your local station here (some times are live, some are re-broadcasts): http://www.wbur.org/syndication

    And here is how you can listen online after the show:http://www.npr.org/podcas…/510053/on-point-with-tom-ashbrook

    [​IMG]
     
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  3. OverTheHills

    OverTheHills

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    Good luck with it, I am looking forward to listening later (not sure what time this is NZ time)
    OTH
     
    barbc56 likes this.
  4. SpecialK82

    SpecialK82 Ohio, USA

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    Wow, thanks for reposting, will be interesting to hear from Dr. Daniel Neides of the Cleveland Clinic. What will be his take??
     
    Last edited: Feb 15, 2015
  5. Sasha

    Sasha Fine, thank you

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    Bump!

    This is on in a few hours. I hope to listen to the recording.
     
    aimossy likes this.
  6. Nielk

    Nielk

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    I had started a thread in this already.
     
  7. Sasha

    Sasha Fine, thank you

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    Sorry, Nielk - we must have crossed - I put this up on Saturday. Can you provide a link, if you'd like discussion to carry on on your thread? :)
     
  8. Nielk

    Nielk

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    Sasha likes this.
  9. Valentijn

    Valentijn Senior Member

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    If my math is right (ha) this starts in 10 minutes. Or some other time completely :D
     
    Nielk likes this.
  10. Nielk

    Nielk

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    Yes. should be in three minutes.
     
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  11. Valentijn

    Valentijn Senior Member

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    Very good intro by the substitute host - making a clear distinction "fatigue" and CFS. Also a brief audio clip from a soccer player hit with it. Sounds like a real patient, not a fatigue patient.

    Dr Ellen Wright Clayton is doing a very good job explaining the symptoms and research.
     
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  12. Valentijn

    Valentijn Senior Member

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    Jennifer Brea is up now. They're also asking patients to call in.
     
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  13. Valentijn

    Valentijn Senior Member

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    Brea is pointing out some of the concerns regarding the process in general, and implementation, but thinks there's a lot of potential.
     
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  14. GracieJ

    GracieJ Senior Member

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    The live link isn't working for me. Will tune in later.

    Edit. Hm. Works fine off the FB site but not from here.
     
  15. Valentijn

    Valentijn Senior Member

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    "Just by standing I was running at full throttle" - Brea describing the effect of her heart beat rising to 140 just by standing up. She's talking about her early symptoms and diagnosis - conversion disorder at first :eek:

    Now she's describing pacing. And that anti-virals have been very helpful for her, and mold-avoidance, and chemical-avoidance. Only a few dozen specialists in the country. Most of what she's learned that is helpful has come from other patients online.
     
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  16. Valentijn

    Valentijn Senior Member

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  17. Valentijn

    Valentijn Senior Member

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    Karen from Salem. Sick since January 2007. Sudden onset, initially diagnosed as a virus affecting her body and brain. Bedridden for months, couldn't work. Then diagnosed with CFS, and still doing "terribly". She's also explaining that people hear CFS patients on the media on their good days, and they don't understand the impact that it has afterward, and the preparation required.
     
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  18. ukxmrv

    ukxmrv Senior Member

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    Yoga!!! (Cleveland Clinic?)

    "We are talking beyond Chronic Fatigue, we have patients with MS who can now move"
     
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  19. Nielk

    Nielk

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    Great. Promotion of CBT and GET!!! Will we ever get away from that?
     
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  20. Valentijn

    Valentijn Senior Member

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    Now Dr Enlander and Dr Neides. Jennifer Brea is still on as well.

    Enlander: Congratulating the IOM for positively bringing attention of the disease to the medical world, and as a biological disease not as a psychosomatic disease. "This disease is a massive, catastrophic problem." People's lives come to an abrupt halt.

    Neides: Interest developed due to a family member having ME/CFS. Patients are incredibly frustrated and doctor-shop to find an understanding doctor who wants to help them improve their quality of life. His Wellness Institute is taking a holistic approach - enhancing immune system to function: proper nutrition, movement/exercise, and stress-management.

    Host is asking about the exercise component - isn't that difficult?

    Brea: Exercise is getting up and walking to the kitchen currently. She performs at 20% of normal on CPET: deconditioned patients are at 85%.

    Neides: Talking about "chair yoga" offered at his clinic. Simple exercises just to get the patient moving. Working within the patients' current limitations. "It's baby steps." But basically describing GET.
     
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