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XMRV Positive? What are your symptoms/medical history?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Here is another thought: could we differentiate different phases of our illness? I have had very severe and debilitating symptoms in the past, but I am getting better. So a survey of "present" symptoms, would not reflect my disease history.

    Sushi
     
  2. _Kim_

    _Kim_ Guest

    I used Advocate's list of Hensue's symptoms to make a sample survey.

    Check it out here
     
  3. Advocate

    Advocate Senior Member

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    Hi Kim,

    I like the survey--especially because there can be so many choices under a question.
    I also love Dr. Bell's disability scale, but can we please use the unabbreviated version? I think the detail included in the original helps people make more accurate self-assessments.



    http://notdoneliving.net/foothold/scales/david-bell

    Somehow, I've lost the ability to preview my posts. Does Preview work only with Reply to String, not Quick Reply?
     
  4. Katie

    Katie Guest

    I concur with this, could their be two lists - past symptoms (no longer occuring) and present symptoms?

    If we're getting super complex, some symptoms I have curreently but are only active at certain times, we could have multiple tick boxes next to each symptom regarding whether you experience a symptom rarely, frequently or constantly.
     
  5. Countrygirl

    Countrygirl Senior Member

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  6. _Kim_

    _Kim_ Guest

    It would be easy to have two sets of questions - one for current symptoms, one for a history of symptoms. I think breaking it up into separate categories will make this a little less monstrous.

    For example, the categories could be:

    • cognitive symptoms
    • pain symptoms
    • neurological symptoms
    • Autonomic Dysfunction symptoms
    • Fatigue Symptoms
    • Sleep symptoms
    • PEM symptoms
    Also, a category for demographics:

    • Male/Female
    • Age
    • Location
    • Years of illness
     
  7. Kati

    Kati Patient in training

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    I am not sure if I am positive, but I agree with country girl- some of my symptoms are cycling- joint pain come and go, severe headache come and go, orthostatic intolerance is faily constant, sore throat varies, shortness of breath comes and goes... Etc... I don't know how we can all compile that for it to make sense.
     
  8. _Kim_

    _Kim_ Guest

    If we use the full unabreviated versions, the text just runs horizontally and you have to scroll too much to read it. The way to do this is to put the whole text in the question. Like this.
     
  9. Advocate

    Advocate Senior Member

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    Hi Kim,

    That's very attractive!

    How many symptoms do you think should be in a poll?

    I have 98 symptoms so far on my master symptom list, almost all taken from suggestions in this string. If we winnow it down too much, we might miss some unusual symptom that is prevalent in xmrv+ people. If we make it too long, people might be discouraged--though it helps that the form is so attractive and easy to use.

    Is it hard to add to or subtract from a poll once it's up?

    My own feeling is that we should tinker with the list of possible symptoms for quite a while before putting up a poll that anyone can use. I think we should take the time to get it right.
     
  10. _Kim_

    _Kim_ Guest

    Correct. [Preview Post] only works in [Go Advanced]
     
  11. _Kim_

    _Kim_ Guest

    If we break those 98 symptoms up into the categories (as one question each), we should have no problem getting everything in.

    Yup, we'll keep editing it until we have a complete list. It's a very easy program to use. I agree, we'll polish it up until it looks right - then put it out there.
     
  12. Advocate

    Advocate Senior Member

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    I don't know, either. Maybe we could specify "current" symptoms in a vague sort of way. Or ask, "Do you sometimes have these symptoms?" Or maybe the poll could be done in two columns: "Sometimes" and "Always" or "Usually" or "Frequently."

    Kim, are parallel vertical columns an option?
     
  13. _Kim_

    _Kim_ Guest

    If we change the poll once it is published, it will erase all of the previous results. So, we can edit and edit again, until it looks right. Once we GO LIVE (hehe), we should leave it alone.
     
  14. Advocate

    Advocate Senior Member

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    Hi Kim,

    I don't understand...
     
  15. Advocate

    Advocate Senior Member

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    Hi Kim,

    Ah. That relieves my mind.
     
  16. _Kim_

    _Kim_ Guest

    I was thinking of just repeating the symptom questions. First question is CURRENT, second question is HISTORY.

    For example:

    1.What are you CURRENT cognitive symptoms?

    • brain fog
    • memory loss
    • confusion
    • word finding problems (what the heck is that word that I learned from Jody?)
    • dyscalculia
    2. Have you had any of these symptoms in the past?

    • brain fog
    • memory loss
    • confusion
    • word finding problems (what the heck is that word that I learned from Jody?)
    • dyscalculia

    This program does have limited options. Some of the fancier (pay) survey programs offer those options, but this is about as good as it gets for FREE.
     
  17. gracenote

    gracenote All shall be well . . .

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    I would also be interested in:

    where the person was when first becoming ill
    where the person lives now
    any relatives with same or other diagnosis and if so who and what
    any close acquaintances with same or other diagnosis

    Maybe there is a better way to ask questions around contagion, inheritability, outbreaks, etc.

    Also, I'm sure there are lists of symptoms as parts of studies and parts of patient support groups that might help in being more thorough (and/or more precise).

    Kim - if you leave the simpler version of Bell's scale, it looks to me like level 2 and 3 say the same thing.
     
  18. julius

    julius Watchoo lookin' at?

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    Maybe simpler than a past and a present section, just have responders rate their symptom if it was present at any time during the illness.

    For example, if you had moderate brain fog five years ago, but not now...just rate it as moderate brain fog.

    We'd still get the information we want, I think, and it would be less daunting for people to complete.
     
  19. _Kim_

    _Kim_ Guest

  20. Lily

    Lily *Believe*

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    I don't want to get carried away here (and possibly someone already suggested it, & I missed it).....but I think it would be interesting to do the same with those who've tested negative and compare the two data sets.
     

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