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The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
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Interviewing Dr. Coffin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, May 6, 2010.

  1. lululowry

    lululowry Senior Member

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    I think Sarahg has the best suggestion of all to begin!:tear:
    I have a great little microrecorder that I used to know how to work...and now I cannot figure it out....:rolleyes:
    The fog...the fog...I just have to laugh sometimes:tear:
     
  2. Rrrr

    Rrrr Senior Member

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    hi all,

    okay! all of these are GREAT questions, as is the suggestion that i educate him some on ME/CFS. but let's stop suggesting questions. there is no way i can ask more than a few. and now i feel sooooo much pressure to get there. what if i'm bedridden that day, like every other day this past 5 wks?

    again, if i can't get there or i can get there but can't ask more than a few questions, i'll see if he is up for being emailed the questions.

    one thing i worry about is that my brain fog is horrible, and i'm not a science person. so i fear he'll tell me some answers and i won't be able to relay them to you all.

    a recorder is a good idea, but i'd asked for an informal chat, not for an on the record interview. i'll see if he is up for doing it on the record, but i think the reason he said yes was because i had asked for something casual.

    xxoo
    rrrr
     
  3. Rrrr

    Rrrr Senior Member

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    i know! i'll go, meet him, chat informally and THEN ask if we can do a follow up on the record interview. and that either i would conduct it or someone else in our cfs community.
     
  4. maryb

    maryb iherb code TAK122

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    Brilliant idea, that takes the pressure off (whew!) and you can just enjoy your chat now.
     
  5. Navid

    Navid Senior Member

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    take the pressure off....stress just makes us feel worse.

    just go and chat and let him know that there are many of us out here starving for more info, so that we can somehow get our lives back...in fact so much that we inundated you, Rrrrr, with too many questions : )

    show him the human face of cfid's...and what xmrv might mean to people like you, me and everyone else here.

    hope u feel better soon.

    take the pressure off yourself!!!! if u come back here and say he was nice and believes there needs to be more research into xmrv...we'll all be happy.
     
  6. oerganix

    oerganix Senior Member

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    Take care of yourself first.
     
  7. starryeyes

    starryeyes Senior Member

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    Rrrr, this is an exciting opportunity and I hope you can make it that day. Definitely take the pressure off yourself.

    One thing you might want to do, but only if you want to, is hand him a hard copy of this thread. lol This is a real suggestion but it's also making me laugh. He has no idea what he may have gotten himself into has he?

    Ask him to write a website for us and/or come here and do a Chat session. ;)

    Anyway, follow your intuition, we certainly don't want to put him off. And thanks so much for sharing this with us.

    :hug:

    starry
     
  8. Rrrr

    Rrrr Senior Member

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    i think i'll also literally cut and paste most of these questions from you all, and if it feels appropriate i'll show them to him (give them to him?). that will show him how eager we all are for his thinking, and how engaged we are in what is happening with xmrv, and how intelligent we all are. i think he'll be impressed. i know *i* am, every day that i'm on this forum!

    i also suggested to the virologist blogger Vincent Racaniello than HE interview coffin. (has he done that already?)

    i suggested this to Racaniello when i emailed him the latest "letter to the editor" from judy mikovits, the one that details the procedure for finding xmrv in testing and why european tests were not finding it. Racaniello seemed very appreciative to get judy's letter to the editor, and said he'd post it on his virology blog.

    rrrr
     
  9. Rrrr

    Rrrr Senior Member

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    WOW, we just both came up with that same idea and posted it at the same time! (to print out and give him this thread)
     
  10. starryeyes

    starryeyes Senior Member

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    Awesome Rrrrrrrrr! You are the best!!!

    :hug::hug::hug::hug::hug::hug::hug:

    Oh I went back to ETA that we ask him to come here for a Chat. ;)
     
  11. Rrrr

    Rrrr Senior Member

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    GREAT idea. I'll certainly ask just that!

    (how do we do that? do we have live chats here on this forum?)
     
  12. JillBohr

    JillBohr Senior Member

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    Don't forget drinking someone else's beer by accident. My ME/CFS sister-in-law and I enjoy drinking beer when we get together and sometimes we get so drunk we accidently drink each other's beer. We still laugh about who got XMRV first and gave it to the other. O.K. maybe not so funny but she is sick and my kids have autism so we have to laugh at anything we can.
     
  13. starryeyes

    starryeyes Senior Member

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    Oh yes Rrrr.. Please come into Chat yourself anytime. It can be hard to get used to. I went in for short increments for a few months and now can handle it all the time. This is my brand of Cognitive Chat Therapy. ;)

    Up at the top of the pages of this Forum it says "Chat Room" and tells you the number of people in there. Just click on it and then people will help you use it once you're there.

    Cort said we could set up Chat times for doctors and scientists etc.. It would be official and moderated like the ones at ProHealth I imagine with announcements going out a couple weeks before like the Webinars.
     
  14. ixchelkali

    ixchelkali Senior Member

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    Rrrr, no pressure. If you're up to it that day, great; if you're not, this is one group of people who will understand completely. And as for all the suggestions for questions, that's all they are, suggestions. Look them over and pick the ones you'd most like answered. It's your interview, you get to ask what you like. I do like your idea of showing him the list of questions. He might find it interesting to know what the patients are wondering. It might even help him prepare for the conference this autumn.

    Please don't stress yourself about this.
     
  15. Rrrr

    Rrrr Senior Member

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    just got a fast reply from the blogging virologist Vincent Racaniello. he said he has not yet interviewed coffin (tho he has known him a long time) and it is a good idea to do so!

    then he said he is also talking with Ila Singh soon.

    more to look forward to!
     
  16. Rrrr

    Rrrr Senior Member

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    great to know about the live chat option! and good point that our questions may help him focus on the upcoming conference!
     
  17. Dr. Yes

    Dr. Yes Shame on You

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    Too fried to come up with a good question right now.

    Just ask him if anyone else uses the term "grind the sausage" or if he made it up.

    And if he went into research because "Dr. Coffin" was too scary for use in clinical practice.
     
  18. leaves

    leaves Senior Member

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    You crack me up :)
     
  19. Kati

    Kati Patient in training

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    Lol Dr Yes, how do you come up with all these things in your head? :rolleyes:;):tear:
     
  20. flybro

    flybro Senior Member

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    pluto
    too funny ...
     

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