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End the Incontinence Survey, Please?

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    #16
    Please consider...

    Since the guidelines are 'changing' to include surveys, questionnaires etc., I hope that you take into consideration
    that many may not wish to participate for various reasons.

    I hope that a separate forum(board) is created for this new
    feature to that those that do not want to deal with it, do not
    have to 'view' headers like the current 'Incontinence' appears on every page.

    I hope that in the guidelines and at the start of each of these future new 'features'...that it is stated that members are not required to participate in order to be part of MSWorld.

    I also feel that we should be allowed to know what or who(source) benefits from the questions answered.

    I also feel there should be some kind of 'warning' that personal info may be requested that may identify a member
    specifically...BEFORE participation.

    Lastly, I wish that those that make administrative decisions like this one, would have taken a poll from members about how they feel about this pending new feature.
    ~life has ups and downs...I try to go in circles~
    dx'd rrms in '97

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      #17
      If we polled members for our decisions, they would cease being administrative decisions. The Management Team (my boss/es) is/are watching and learning from what our members are saying here.
      Sparky10:
      I sense perhaps you are offended by my suggestions/observations...I sincerely hope not.

      I truly thought that MSWorld is a community of folks dealing in various ways with MS and how it affects our lives.

      I noticed that you did not respond to my other suggestions
      and/or concerns...(I'm having an emotional moment right
      now...so please understand)


      I feel a little hurt that you responded to other posts in detail, but chose to only
      reprimand me for suggesting a 'poll'.
      ~life has ups and downs...I try to go in circles~
      dx'd rrms in '97

      Comment


        #18
        For a number of reasons, I haven't logged in or posted for a while and have done very little lurking. I came in tonight because a friend told me I had to read this thread.

        This isn't the MSWorld I know and love anymore. Too much has changed. The topic of the survey is irrelevant to me. It's an issue many of us deal with and something that should be researched. However, here we have a survey, approved before changes, granted, but a survey nonetheless from an unidentified entity. We have no idea of who is getting this information of how it will be used other than "research". It seems common sense that someone who is asking about how often I pee would be identified before I do so. It doesn't seem like you'd need a rule for it.

        We don't know what kind of research they're doing. We don't know if they're reputable. Would I be helping legit medical research? Are they someone that I may have an ethical problem assisting? Are they related in any way to the researchers who had a survey here before that promised Amazon gift cards to participants and didn't give them to most who responded? We just don't know anything other than the topic. I'm highly uncomfortable with many aspects of this.

        Obviously, MSWorld can't be held responsible for the actions of surveyors or what the surveyors do with the info gathered. I would think that would be a very good reason we don't have them...to protect both members and MSworld.

        Between this and the other reasons I haven't been here, I'm finding MSWorld to be a lot less the home it used to be. I'll miss some of the posters, but it's looking like it might be time to move on.

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          #19
          Other than the big letters anouncing the survey not sure what the big problem is, if you are concerned who is using the info don't participate in the survey simple end of discussion. It's not different than any other thread on this site. I personally am happy that the restrictions are being loosened as there hve been and are many good surveys out there that could help us all.

          My suggestion is to have all surveys listed under a seperate subject and those that are interested in them can participate as desired.
          Plan for the future, but not too hard; it’s not your decision anyway

          Comment


            #20
            I got a request for a different survey in an MSW email notice last month. I answered most of the questions but passed on posting my age or birth date (wayyyy too much pers info to go out on the web). I got a response at the end of the survey saying they were'nt interested in me because of my demographic.
            Mods, can you understand why we're so leery about this personal info stuff? Research is great but all it takes is one bad apple. I can't afford someone using my info to get a credit card or other abuses and I'd preferr that most people have to guess that somethings wrong with me vs knowing all the details before they meet me.

            Comment


              #21
              Originally posted by Bob698 View Post
              I got a request for a different survey in an MSW email notice last month. I answered most of the questions but passed on posting my age or birth date (wayyyy too much pers info to go out on the web). I got a response at the end of the survey saying they were'nt interested in me because of my demographic.
              Mods, can you understand why we're so leery about this personal info stuff? Research is great but all it takes is one bad apple. I can't afford someone using my info to get a credit card or other abuses and I'd preferr that most people have to guess that somethings wrong with me vs knowing all the details before they meet me.
              I'm as private as the next person but don't see how adding an age or birthdate, which you could always alter, is putting us in jeopardy of credit card fraud or being outed by a stranger on the street. If it makes you uncomfortable don't answer.

              None of these volunatary surveys are given too much weight anyway but it might help start a more scientific study.

              Although some people might want to deny the large number of us that have urinary issues from MS it is a reality so if this survey can help someone it is worth a small banner on the top of the site, imo. I'm sure they are paying for it.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

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                #22
                Jules we have agreed again!!!! LOL
                Plan for the future, but not too hard; it’s not your decision anyway

                Comment


                  #23
                  Originally posted by Scooter24 View Post
                  Jules we have agreed again!!!! LOL
                  Lol you beat me to it! I was going to say the same thing.
                  He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                  Anonymous

                  Comment


                    #24
                    OK, let me make this easier to understand.
                    Suppose you have good credit but I don't. If I know when and where you were born I can make a pretty good guess what your social security number is. Its also easy to find your address and phone number (google your full name and watch what pops up) and I can make some pretty innocent sounding phone calls to find out more of your personal info. Pretty soon I have enough info to make my credit really good- by becoming you.
                    I can also generate enough names and addresses to sell as leads for things like vinyl siding and time shares in Boca.

                    Comment


                      #25
                      By the way, I'd never do those things in my last post. That being said, about ten years ago I moved to a new apt. and called Verizon to get the phone set up. Turned out they wouldn't do it until I paid off my previous account for a place where I never lived.
                      This stuff does happen.

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                        #26
                        Bob that stuff happens alot due to mis information and typo errors, I also had it happen to me, when I applied for a job 5 yrs ago and they ran backround check on me, it came up that I had been arrested for assualt with a deadly weapon but the charges were droppped, I have never been in the state or city where I was supposedly charged and I was actually in stationed in London UK in the air force at the time. I contacted the county prosecuter and $3000 later in lawyer fees got it removed from my records as the social security typed in the report was mine not the other individual so it came up when they searched it even though the name was not even close to mine. So even if you are super protective it can still happen, like someone else said I always put in incorrect info on birthday and age when I fill those things out.
                        Plan for the future, but not too hard; it’s not your decision anyway

                        Comment


                          #27
                          This thread seems to have changed topics, but OMG - I'm not the only one who thinks that the pee pee stuff is taken a bit too far?

                          I have a theory about this. If you are a long time MSer, then you remember that no one talked about their pee pees with the doctor. Now there's a thrust to get these things out in the open.

                          But if you're just beginning your MS adventure, you go to an MS site and pee pees are immediately in your face . You wanted to know if your numbness is a relapse but now you're worried because you're supposed to become incontinent. Why? because it's such a big topic, apparently. It's actually a huge topic.

                          It's over done, IMHO.

                          Comment


                            #28

                            It's over done, IMHO.
                            Not if you're the one with the problem it's not. I'm not a guy, but I spoke to plenty of them when I worked for my chapter of the NMSS, and believe me it's a HUGH problem!
                            “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
                            Diagnosed 1979

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                              #29
                              I'm going to assume since you talked with them about it, that they were aware they had the problem and that they were willing to discuss it. I'm not sure it needs to be displayed so prominently. I could be wrong, but I don't get it.

                              Comment


                                #30
                                Hey Pooh as far as a med for the plumbing i take a little blue pill, ok its "the other blue pill" its called oxybutone it does wonderes for me just take it when i know i am going out and dont have accses to a coffe cup lol

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