1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

XMRV+ Positive Survey Launch

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

  1. _Kim_

    _Kim_ Guest

    In January and February, we asked you to Help us with the XMRV Survey.
    Thanks to all of the wonderful input, we were able to develop a research instrument that actually reflects patient experiences. We thank each of you who contributed to this project.

    For those of you who are XMRV+ and would like to take the survey now, go to our
    XMRV+ Survey website. Please don't feel like you have to take it all at once. You can save your work and come back later (the program will email you a link to resume). Thank you in advance for your participation.

    For the rest of you, I made a Sample XMRV+ Positive Survey for you to view. It is not the actual survey. Any responses entered will not be recorded.

    Below is the notice that I have posted to Co-Cure:

    [Just one last note. I would like to give special thanks to Advocate and julius who kept me motivated through this whole process. Their dedication to this project is what has allowed it to come to fruition despite my recent crashes. This was truly a team effort. ~Kim]
     
  2. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    Wow, well done everyone. Great thing to happen today.
     
  3. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    this is brilliant, you must be proud!
     
  4. Kati

    Kati Patient in training

    Messages:
    2,126
    Likes:
    1,788
    Julius, Advocate and Kim, thank you so much for your hard work!!!
     
  5. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Fabulous job, guys! The survey looks great. :victory::victory::victory:

    :Sign Good Job::thumbsup::balloons:
     
  6. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Ditto from me. Some people work so hard for the rest of us.

    :victory::victory:
     
  7. subtr4ct

    subtr4ct Senior Member

    Messages:
    112
    Likes:
    0
    Thanks to everyone who worked on this. I am sure that many of us are clamoring for this type of information. Where/how can we view results?
     
  8. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    Santa Rosa, CA
    This looks excellent. Can't wait to see the responses coming in.

    I printed out the sample survey (31 pages) so that I could read it on paper first for some reason, filling out surveys online is too challenging for me. I will take my time and respond to it as soon as I'm able.

    I had no problems using Safari.
     
  9. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,129
    Likes:
    3,399
    N. California
    Great Job, you brilliant devoted persevering geniuses!

    :victory::victory::victory: :Sign Good Job::balloons::balloons::balloons:

    BIG HUGS to all of you! :hug::hug::hug:
     
  10. _Kim_

    _Kim_ Guest

    We will post results on the website once we get some responses. If the WPI UK results come in soon, we should have enough "subjects" to get some early peeks into what this cohort looks like. Other possibilities for publication are being considered.
     
  11. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    13
    Chicago
    Excellent job!!!!!! This is the best survey of symptoms and history I've seen. The cognitive symptom list is especially good. Thanks Kim, Julius, Advocate!

    It's amazing what a few good people can do! What a wonderful thing to do for May 12!

    I tried making it through the sample survey at one go. Couldn't do it. :In bed:

    :Sign Good Job: :Sign Good Job: :Sign Good Job:​
     
  12. _Kim_

    _Kim_ Guest

    gracenote,

    That's a smart idea to print out the survey first. There is a lot of text in that thing (whew!). Marking your answers on paper first would make clicking through the online one so much easier.

    Thanks for letting me know about Safari. One of our beta testers had problems viewing the page. I was hoping it would be okay.
     
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    :victory: Julius :victory: Advocate :victory: Kim :victory:

    Thank you very much indeed for creating this remarkable tool!

    It is seriously impressive!

    :Sign Good Job:
     
  14. _Kim_

    _Kim_ Guest

    Thank you to the four brave souls who have ALREADY completed the survey. One of the cool features of the survey software is that it displays a map and marks the locations of the responders with blue dots. I've just updated our website to show the current map. Check it out.
     
  15. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    I love it when we speek with one mind, just to reiterate

    :victory: Julius :victory: Advocate :victory: Kim :victory:

    Thank you very much indeed for creating this remarkable tool!

    It is seriously impressive!

    [​IMG]
    appreciation in large lorry loads to you all.
     
  16. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    what they said!

    very impressive you 3 named marvels + 1 or more unnamed. Can't thank you enough for this. Think I'll follow gracenote's example and print it out. Especially love the map.

    sb aka islandfinn
     
  17. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    What Koan said. Ditto!
     
  18. Cloud

    Cloud Guest

    impressive! Thank you!
     
  19. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi all,

    It makes me so happy to see that people are responding and are taking the survey. We tried really hard to honor everyone who contributed to it by including their symptoms.

    Isn't our Survey website pretty! Isn't the internet great!

    Advocate
     
  20. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Advocate ~

    You really made me smile!

    Yes the internet is great!

    Thanks again,
    Koan
     

See more popular forum discussions.

Share This Page