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XMRV+ Positive Survey Launch

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by _Kim_, May 12, 2010.

  1. julius

    julius Watchoo lookin' at?

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    Thanks for all the positive feedback!

    I am so happy that people are already doing (and done!!) the survey. I am just really looking forward to the results and seeing how many sausages we can get out of this thing.
     
  2. Advocate

    Advocate Senior Member

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    The bowels of the survey

    There's a map in the bowels of the survey software that automatically adds a colored dot to the appropriate country whenever a survey taker has clicked on the country he lives in and has completed the survey. We tried to transfer that map to the header on the Home Page, but ran into difficulty.

    I brazenly use the editorial "we." I know nothing about these things, but I do love maps, and I wanted to have a world map like the one on Judy Mikovits's slide, the one that showed where HTLV is found.

    Anyway, now I see some faint green dots mysteriously appearing on the U.S. map in our survey header. Kim, are you putting them there manually? (Kim is always mucking about in the bowels.) :D

    Advocate
     
  3. _Kim_

    _Kim_ Guest

    That's me mucking around in hip waders. Yeah, I just updated the map again when I saw that EIGHT people had completed the survey.

    You guys ROCK!!! I love seeing your little dots pop up on the map.

    survey_response_&#.jpg
     
  4. citybug

    citybug Senior Member

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    It is pretty! I'm blown away. I just searched for xmrv positive and a lot of things came up. Then I tried xmrv+ and these posts came up top!
     
  5. Koan

    Koan Be the change.

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    Wow, you guys, this is amazing! It's crazy that you pulled off such a huge undertaking so quietly!

    Amazing!

    Truly!

    :thumbsup:
     
  6. Cort

    Cort Phoenix Rising Founder

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    Congratulations on such a professionally done survey. Did you guys have medical or research help from anyone? Really a superb job!
     
  7. Cloud

    Cloud Guest

    I dig the map....feels a little more connected with everyone. I'm that dot waving to everyone...
     
  8. _Kim_

    _Kim_ Guest

    Yes, 59 experts on ME/CFS helped us :)
     
  9. hensue

    hensue Senior Member

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    :victory::thumbsup::balloons::Sign Good Job:no that dot is me waving at everyone lol

    That was a huge undertaking and Thanks so much!
     
  10. hensue

    hensue Senior Member

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    how and when will the data be evaluated as you go along or all at one time?
     
  11. julius

    julius Watchoo lookin' at?

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    From time to time we will post and update results on the homepage.
     
  12. hensue

    hensue Senior Member

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    :hug:I just love you smart people!!
     
  13. CBS

    CBS Senior Member

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    Not much to add except a that I really appreciate the very professional job you've done. The page looks great and the questions are well very well written. I'm always struck by the talent found on PR and the rich lives that we all used to live. It comes through loud and clear in a project like this.

    Kim, Advocate, Julius, & Anonymous - you rock!

    Thank you!
     
  14. _Kim_

    _Kim_ Guest

    Hensue, I ran a quick summary report on the 9 responses that are in so far. I found the answers to these two questions interesting. 3 out of 9 reported that they'd received a blood transfusion or tissue transplant!

    #7 survey chart..JPG

    And you are of mixed opinion on trying ARV Therapy
    #43 survey chart..JPG

     
  15. _Kim_

    _Kim_ Guest

    Thanks Wildaisy!! The software picks up your IP address and maps it, so it is accurate only if your IP address is not a proxy. It's approximate, I'd say. The software places a new dot on the map every time someone finishes the survey. I'm just copying that image and inserting in our header. I think I see you on the map now!!
     
  16. Koan

    Koan Be the change.

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    It's quite amazing!

    I'm so impressed!!!

    :hug:

    :thumbsup:
     
  17. flybro

    flybro Senior Member

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    I am so excited by this survey,

    it feels like we're finally going to get some decent diagnositic statistics,

    I hope this gets filled in by all XMRV positives, I don'y know how far our reach is, but I hope we have some patient groups getting knowledge of this survey out their.

    If people are either bedbound, or without internet connection in the UK, i would be happy to try and help someone fill it via the phone,although that would mess the map up.

    If anyone thinks I can be of help with this please PM with and for details.

    I haven't been tested so checking out everyones symptoms and seeing how close they are to mine is the next best thing.

    again big thanks for the survey.

    And all the XMRV poistives, thank you for having courage to get tested wether by co-operating in a study, or by risking your limited funds, and thank loads and loads for filling the survey in, your contributions really are invaluable.
     
  18. spindrift

    spindrift Plays With Voodoo Dollies

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    WOW!!!




    :thumbsup: to all who made this happen!!!!!!!!!!!!!!!!!!!!!
     
  19. CBS

    CBS Senior Member

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    Labs

    Hi Kim & Others,

    Question 3 in the XMRV+ survey presents a list of labs/methods that does not allow the respondent to add a new lab/method that is not on the list.

    VIP Dx - PCR
    VIP Dx - Culture
    WPI (as study subject) - PCR
    WPI (as study subject) - Culture
    WPI (as study subject) - Serology (Antibody)
    WPI (as study subject) - Western Blot
    Clongen Lab
    Direct Resonance Testing


    There are other labs testing for XMRV and I know that at least some patients have received their results. Is there a mechanism for writing in a lab/method that isn't listed until the new lab can be added to the permanent list? and if not, could one be added? These other labs are potentially very intersting (perhaps the most interesting) as they could validate the original WPI findings.

    Thanks,

    Shane
     
  20. fds66

    fds66 Senior Member

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    I love the map - it makes it all so exciting.
     

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