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Thread: Approved survey regarding patients/caregivers and internet forums

  1. #11
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    I took the survey too. It was most unusual to see a survey like yours here as this forum has always had a very strict rule stating that nobody is supposed to do research here, but apparently the administrators thought your survey had enough merit to be posted.

    I was wondering about some of the same issues Parsi raised as I did the survey though.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  2. #12
    Distinguished Community Member
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    Oct 2006
    Midwest USA


    A great deal depends on how long one has been visiting the forums. The survey seems more applicable to someone new to the forums. When new, I think more people are looking for information. Some just want to talk with people with the same experiences. As time passes we keep our eyes open to info but it's not the main reason for coming except if a new symptom arises or a new drug is prescribed. We do share experiences because it is often the only place to find people who understand or we check to see how our cyberfriends are doing. And we come often. So usually one person(s) doesn't stick out becomes we interact with several on a regular basis.

  3. #13


    Hi everyone,

    I came back to update the outcome of the research I conducted last November. I finally finished the study and a study summary can be downloaded at If you have any feedback or comment, please feel free to contact me or leave your thought at the commenting area on the website. If you are interested in my research, please stay tune and check out my future studies later. Thank you very much for your generous support!

    p.s. For participants who requested a copy of the result, I will email a copy to you very shortly.


  4. #14
    Administrator/SYSOP Mike Weins's Avatar
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    Oct 2006
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    Thanks for the follow up Hanmei
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
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    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

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