Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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CFS/ME/FMS Questionnaire.

Discussion in 'General ME/CFS Discussion' started by Folk, Nov 21, 2014.

  1. Folk

    Folk Senior Member

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    Hi. I'm trying to organize, similarities/differences and rates of success/failure among CFS/ME/FMS sufferers.

    How would you feel about answering this questionnaire to help me help us?

    Gender:
    Age:
    Height:
    Weight:
    What condition do you have?
    How long have you had it?
    What's your principal problem (pain, fatigue, etc)?
    What's all your symptoms?
    In a comparison how are you now (better than last year, worse than ever, symptom free etc...)?
    Do you smoke/drink/use other drugs:
    Do you have any other illness/problem?
    Do you work?
    Do you have children?


    What treatments have you tried (please decribe the goal, what did succeed, what did fail and what do you still do)
    • Allopathy:
    • Homeopathy:
    • Naturopathy:
    • Orthomolecular:
    • Diet:
    • Physical (exercise, massage, acupunture, etc...):
    • Mind/body:
    • Other:

    What doctors have you consulted with? How was it? (put here what you feel it would be useful)


    What are you still willing to try?
    • Allopathy:
    • Homeopathy:
    • Naturopathy:
    • Orthomolecular:
    • Diet:
    • Physical (exercise, massage, acupunture, etc...):
    • Mind/body:
    • Other:

    Additional info:
     
    Last edited: Nov 21, 2014
  2. Min

    Min Guest

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    What is the question for please? What will you be doing with the results? is this market research for something you intend to sell?
     
  3. Folk

    Folk Senior Member

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    No, nothing to sell here. I have FMS my self. My goal is to organize all the massive information we have here.

    I wanna try to put togheter what did work, and for what condition. What doctors are well recomended. What to avoid, what to seek first.

    Something like a guide, or a map for CFS/ME/FMS sufferers.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Folk
    I am wondering where this questionnaire would be available? It doesn't seem something that would work with the PR software. I'd guess that privacy would be a big concern for many members and that they might not be willing to answer such a questionnaire anywhere other than at a medical facility where the information would be protected by Hipaa.

    Sushi
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Have you seen the "Roadmap" prepared by Hip?

    Sushi
     
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  6. Folk

    Folk Senior Member

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    Well I tried to stay away from any personal info (name, adress, wich wouldn't be useful at all). I think if someone think something in this is to personal, he or she could send me in private and the best I could do is say that it will remain confidencial. If someone more credible prefer to be some kind of intermediate between the person and me, that would be ok too.


    Yes. It was one of the reasons I had this idea.

    Was thinking about making something pratical and easy to follow. (something like, "well everybody who went to this doctor loved it, everybody who talked to that other one hated it, I know where to start)
     
  7. A.B.

    A.B. Senior Member

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    The situation is too complicated to get any useful information out of a poll like this. You would need many participants, a greater number of questions, and questions that are about very specific symptoms or abnormalities (preferably measurable).
     
    Sushi, Valentijn, zzz and 2 others like this.
  8. Folk

    Folk Senior Member

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    It's not meant to be statistical or cientific... Is just a help.
    Something better than typing "Doctor xyz" in search and find lost mentions about him..
     
  9. barbc56

    barbc56 Senior Member

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    There's also a site called patients like me but I don't know if it's helpful.

    I would think cfs/me organizations would have helpful information.

    The question What are you willing to try?, doesn't sit well with me.I dont see how an answer to that question would really benefit patients.

    Barb

    ETA @Hip

    Very impressive!
     
    Last edited: Nov 21, 2014

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