Participate in FM CFS Research From Your Desktop

Discussion in 'Fibromyalgia Main Forum' started by JLH, Sep 30, 2006.

  1. JLH

    JLH New Member

    Participate in FM & CFS Research From Your Desktop ......

    Anyone, anywhere, who has Fibromyalgia or Chronic Fatigue Syndrome and reads English can now contribute easily to a global fact bank on people with serious chronic illness. It is designed to pinpoint the factors that distinguish those patients who achieve better health and recovery.

    The “Niagara Health Study,” conducted by Canada’s Brock University, is gathering the raw data via an online “no-names-involved” survey.

    Your contribution is needed.

    The wide-ranging sets of multiple-choice questions you will click through are easy to answer, yet also often intriguing and thought-provoking. And, though users need not answer all questions, this survey leaves no stone unturned in probing the respondent’s life, psyche, attitudes, health and illness history, and relationships. All told, the survey moves through more than 50 screens.

    It assigns each user a number, in chronological order of survey access. So if you want to answer a few questions at a time, you just refer to your number and come back as many times as you want until you finish. Or you can decide to withdraw at any time.

    To access the survey, go to

    A report on the data and findings from this worldwide study will be reported by mid-2007.

  2. hugs4evry1

    hugs4evry1 New Member

    I did this study after I saw your post but I just want to put out a few warnings.

    The further into the questionaire that I got, I realized that they're asking questions to place us into the "control freak, depressed, perfectionist" category.

    The questions aren't exactly trick questions, but you do have to be careful because you can get going, then wham! They stick in a question that if you're not paying careful attention, will put you back into that category mentioned above.

    For anyone who is suffering from Fibro Fog, I suggest you do this carefully so you don't accidentally answer questions incorrectly.

    Some questions were gently insinuating the above personality type because of their wording. Like have you had certain problems because of your health or depression. My answers would have been tricky because I do NOT suffer from depression, but for health reasons, my answer would have put me in that category.

    Other questions were asked repeatedly but in different ways and had I not felt well this morning, I would have been too confused to answer correctly, again putting me in the above mentioned category.

    I guess basically I thought that this questionaire is trying to put us in a box with a neat little label....


    Nancy B
  3. IntuneJune

    IntuneJune New Member

    JLH When I read your post, I thought great!

    Then I read Nancy's.

    Thank you both for posting.

    My husband always cautions me about surveys; these are (always NON-FM related). He graduated with a Master's Degree in Business. He reminds me EVERY time I quote something from the newspaper. Surveys can ask the questions to prove the outcome the surveyors WANT. Most surveys are NOT objective.

    Nancy just proved my husband's statement AGAIN.

    JLH, by posting this, you brought to light a possibly flawed survey. Did you have the same response Nancy did?

    It will be interesting to hear from others who have taken this survey.

    Thank you again, JLH and Nancy.

    Fondly, June

  4. elliespad

    elliespad Member

    I completed the survey. I HATED it. I believe the surveyor was trying to peg people with Chronic Illness/Pain as being a Depressive Personality. Hated it but finished it anyway.
  5. JLH

    JLH New Member

    I just took this survey.

    I don't think it was flawed, but I do agree with Nancy about the questions.

    I DID NOT LIKE it either! Statistics can always show what you want them to show. For some reason, the questions were leading to being depressed, a perfectionist, etc.

    I also thought I would never get through!! But, maybe that is because it is 2:11 a.m. right now! LOL

    After taking it, I really don't know what in the world it was trying to prove!!

  6. shar6710

    shar6710 New Member

    I read the informed consent form and see why some of you might have disliked the survey. It is not a medical survey and stated it's intended purpose as:

    "The objective of this project is to study how our experience with close interpersonal relationships may have an impact on our health and well-being. We are interested in your experience with possible health problems and with your personal relationships...
    This research is supported by a grant from the Social Sciences and Humanities Research Council of Canada."

    That's not to say that there is something wrong with this but it helps to know that this isn't a CFS/FM survey.

    Hope this helps,

  7. mindbender

    mindbender New Member

    It's starting all over again. I was reading and some of you are right about this. I FEEL LIKE CRAP TODAY. I would answer questions differently today then I would have yesterday.
    [This Message was Edited on 10/02/2006]
  8. angellwolffe

    angellwolffe New Member

    i took it to. but as i was going along i started to see a lot of similar questions to the depression questionaires. I do not have depresssion but many of my answers would make it sound like i do.


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