The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Take the "Twenty Years Ago Today" survey

Discussion in 'General ME/CFS News' started by Cort, May 12, 2012.

  1. Cort

    Cort Phoenix Rising Founder

    Check out our "20 Years Ago Today" survey celebrating the 20th Anniversary of International Awareness day. A wide-ranging (would you take Rituximab if you could get it for free?), sometimes quirky, (what was the most you ever spent on ME/CFS?), sometimes wishful (if you had $100 million dollars to spend on ME/CFS how would you do it?) look at ME/CFS, among other things, we ask where you were 20 years ago, where you are today and where you think you'll be in the future.

    Check out the "20 Years Ago Today Survey Here"....
     
    heapsreal likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,438
    Likes:
    21,674
    Albuquerque
    Interesting Cort! Can your answers be seen by others--in other words is their a visible link between you and your answers?

    Sushi
     
  3. Cort

    Cort Phoenix Rising Founder

    I don't think so - at the end we'll push a button and get the results - that's about all I know at this point :eek:
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    That was fun and interesting to do - thanks, Cort!

    When/how can we see the results?
     
  5. Cort

    Cort Phoenix Rising Founder

    I'll probably keep it up there for a week or so and then post the results in a blog...
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    For quite a few of the questions I wanted an 'I've got no idea' option.

    For 'most negative event', I'd have put the poor Wessely/Chalder study that showed no association between viral infection and chronic fatigue, or the promotion of the notion that CFS was a result of unacknowledged depression (Wessely/Chlader again).

    I'd have thought that for a lot of those questions 200 patients would give 200 different answers.
     
  7. Cort

    Cort Phoenix Rising Founder

    Thanks for the idea.

    We'll see how it turns out....it should be interesting :)
     
  8. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    2,309
    Likes:
    2,243
    US
    There is one question where it says pick the top 2, but it only lets you pick 1.
     
  9. Cort

    Cort Phoenix Rising Founder

    Darn - I think I know which one that is ...I'll check it out. Thanks
     
  10. Cort

    Cort Phoenix Rising Founder

    I think I know what the problem was; the question was formatted correctly but when I was creating it I accidentally checked one of the boxes - so there was only one answer left. I fixed it and I think its OK now..
     
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    Interesting little survey

    I like the multiple choice part in which asks what doctor you'd see if you had all that money. (one can only wish but its a very nice thought).
     
  12. Cort

    Cort Phoenix Rising Founder

    Thanks - glad you were able to get back into the Forums :)
     
  13. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,454
    South Australia
    Some interesting questions.

    The survey missed De Meirleir's classic book 'Chronic Fatigue Syndrome: A Biological Approach' though.

    That was a big one for me to finally accept my CFS diagnosis and to see what scientists were doing.
     
  14. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Dear Cort, your survey missed an answer- I forgot which question it was but I am already on RItuximab ;-)
     
  15. beaker

    beaker ME/cfs 1986

    Messages:
    773
    Likes:
    1,839
    USA
    There were a few questions that I wished had an "other" options, that did not.
    I am thinking in particular of the books --- Greg Charles Fisher's "Waiting to LIve", *possibly* the first book published by a patient back in the 80s.
     
  16. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,410
    London
    For books it was the " milehigh staircase " in the early 80's. We need a 30 year survey for that though.
     
  17. Cort

    Cort Phoenix Rising Founder

    Yes, A very important book for me....it helped prompt me to start the website...I wondered how many people read it given how technical it is...
     
  18. Cort

    Cort Phoenix Rising Founder

    Reaching way ukxmrv - never heard of it...It must have been one of the first...
     
  19. Cort

    Cort Phoenix Rising Founder

    I'll put an other option in there now...thanks - another book I hadn't heard of....When we tabulate the results I'll mention this book and the milehigh one as well.
     
  20. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Great survey Cort, and even fun to take. Really good questions - especially liked "knowing what you know now, what would you do or not do". Looking forward to reading everyone's answers :)
     

See more popular forum discussions.

Share This Page