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Dr oz preview - "simple stretching for xmrv"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Dec 1, 2009.

  1. DrDonnica

    DrDonnica

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    The Dr. Oz Show will air on
    Thurs. Dec. 3. Yes, I wanted to explain post-exertional malaise and the concept of mild exercise when a patient is not in a flare up, but I was told we couldn't go there.
     
  2. Koan

    Koan Be the change.

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    Thanks much, Dr Donnica, for that illuminating summation. We know you did all that was humanly possible.

    Thanks for being such a fine and intelligent spokesperson on behalf of all with ME/CFS. Your efforts are much appreciated!

    I wish you and your family the very best!
    Koan
     
  3. DrDonnica

    DrDonnica

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    Another differentiating fact between CFS & depression! I was so prepared to discuss the differences between CFS & depression on the Dr. Oz Show, but didn't get to cover that topic. I had it down to 3 great sound-bites. Oh well--I'll have to wait for Oprah to call. . .!
     
  4. DrDonnica

    DrDonnica

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    In defense of Dr. Oz, he is a VERY good cardiovascular surgeon, but CFS is not something he treats/knows much about/etc. Much like most other doctors. The Fox interview was clearly unscripted and an upcoming "preview" of several segments designed to get people to tune in. Give him a chance. . .and give him credit for recognizing that this was important enough to preview. We all mis-speak occasionally on tv as well: I even totally spaced out in the middle of one of his questions & "forgot" what the question was! (and I don't have CFS--just "normal" sleep deprivation & fatigue). I didn't acknowlege that though, & just went "off" on a tangent about how medical schools aren't even teaching about CFS & doctors need to take more responsibility for their own Continuing Medical Education. We'll see if they edit that out!
     
  5. Koan

    Koan Be the change.

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    :D LOL! :D

    You will be great, I have no doubt!

    Koan
     
  6. Andrew

    Andrew Senior Member

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    I don't know what Dr Donnica told him, but I think any talk show guest who really wants to support us should refuse to get sucked into the fatigue paradigm. And the first thing they should do is give an analogy about how stupid the name is, then give examples of how bad this can be (cancer, not being able to walk, etc.), and then present it as a multi-symptom illness. They should never present it as fatigue plus some miscellaneous symptoms.
     
  7. Koan

    Koan Be the change.

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    Hi Andrew,

    It's easy to overestimate the amount of control the guest has. In actual fact, the guest has no control and very limted influence unless the show is live and Oz is not.

    It's really not possible to imagine how little control one has unless one has been there.

    There is simply no way to "give" what you wish to give because they take only what they want to take.

    peace out,
    koan
     
  8. Dreambirdie

    Dreambirdie work in progress

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    THANK YOU DR DONNICA!

    I am SO GLAD you were the chosen "expert" this time around, and I know you did all you could to get the TRUTH across.

    I agree with you that getting our foot in the door on this issue is better than no foot at all.

    AND

    I am now sure that attention is paid to complaints about misleading information. I think that Dr Oz REALLY WAS motivated to do another show, due in part to the pressure he got from us (on the forum), and others who live with CFS, and from the WPI folks bugging him for weeks to do that interview with Judy Mikovits.

    In the big picture I think we all DID GOOD!

    Don't forget, revolutions do not happen overnight. It took ages for people to change their minds that leprosy was NOT caused by demonic possession. ;):):)
     
  9. DrDonnica

    DrDonnica

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  10. DrDonnica

    DrDonnica

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  11. Dreambirdie

    Dreambirdie work in progress

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    Yes, agree.

    I think we (including me) have overreacted here a bit. It would be good if we waited to see the show segment, BEFORE we rush in to complain...
    about what we don't yet know for sure.

    Something about BEING IN MOMENT would be a good idea for now.
     
  12. Koan

    Koan Be the change.

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    True enough, maybe that wacky upstart NYT has legs after all.

    :rolleyes:
     
  13. DrDonnica

    DrDonnica

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    Thanks Koan for explaining that. The other issue when you are a frequent TV doctor-guest is that you have to balance the feeling of frustration with not being in control with the potential benefit you can do with the bit of time/input that you do have. You also have to develop a pretty thick skin because you know that you will be disappointing a number of people most of the time. The nature of the beast (tv) is that time is very limited. . . & you never know when your last comment will be. So the trick/challenge is to get the most important thing in first. We don't have the luxury of building a story from start to finish.
     
  14. Andrew

    Andrew Senior Member

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    I think, then, the patient community is going to have to give him an earful. Can you imagine if he did a show about flu season and refused to talk about anything but fatigue management.

    The "CFS" name is killing us. Even the presence of a retro-virus doesn't persuade.

     
  15. gracenote

    gracenote All shall be well . . .

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    pithy response

    I agree with you Andrew. As soon as the name chronic fatigue syndrome is mentioned there needs to be an instant counter to it. Can anyone come up with a pithy one sentence response that could be repeated over and over by everyone who comes into contact with the media?

    Chronic fatigue syndrome is not about fatigue, it's about . . .
    Chronic fatigue syndrome is . . .
    Chronic fatigue syndrome, a debilitating ___________ disease . . .

    Not awake yet. Need help.
     
  16. Koan

    Koan Be the change.

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    Dr D,

    It's your experience and your understanding of the medium that makes you so kick-ass. I don't think anyone can pack as much pertinent and well articulated information into a segment - live or no - as you can.

    You absolutely know what you're about and we are very lucky to have you. Make no mistake about it, we know that.

    Thanks you!
     
  17. Dreambirdie

    Dreambirdie work in progress

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    Hi Gracenote--

    In the Oz Show talking points I came up with with Dr Donnica, the first one was:

    CFS is not the same as fatigue. CFS is a DEBILITATING NEURO-IMMUNE DISEASE.

    I hope that made it on the air!
     
  18. dannybex

    dannybex Senior Member

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    Dr. Donnica,

    You have nothing to apologize for.

    With all the input you and others provided them ahead of time, it was still Oz and Company, not you, that limited what could and perhaps should have been at least mentioned, let alone discussed. The show is 40 minutes long (plus commercials) so how they could argue that they didn't have enough time, just doesn't hold water.

    All of this may just have a silver lining, as if the show turns out poorly, no doubt he'll be flooded with even more emails.

    With great respect,

    Dan
     
  19. Andrew

    Andrew Senior Member

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    Thanks Koan. I posted before I read Dr. Donnica's explanation of how they tied her hands.

     
  20. sosumi

    sosumi

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    Next Target...

    Our next target should be someone like Tim Johnson on 20/20 or Nightline.
     

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