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    #61
    I’m sorry that I haven’t been logging on often anymore. So I confess I am not sure what you are referring to. When I was first diagnosed I was on this site constantly. So much information and comfort was there.

    There has been a change. We don’t exactly know what has happened. I perceive it as over control in the moderators. Don’t get me wrong you are wonderful people and are volunteering to make this site possible for us.

    I am guilty of being an old timer. So many topics I already know the opinions of some of the other old-timers. We get any rut and a deadlock, forgetting about what we are here for. The number one objective in my humble opinion is to be available to the newly diagnosed. That means not only providing information but comfort and love and a place where no one will feel judged.

    I will think about what I can do to make this a better place and I hope other old-timers will look at what they could do to help others, too.

    Don’t give up on us! Demand what you need. We need a knock over the head sometimes.

    Comment


      #62
      Originally posted by palmtree View Post
      I’m sorry that I haven’t been logging on often anymore. So I confess I am not sure what you are referring to.
      Have you read this thread in it's entirety?

      When I was first diagnosed I was on this site constantly. So much information and comfort was there.

      There has been a change. We don’t exactly know what has happened. I perceive it as over control in the moderators. Don’t get me wrong you are wonderful people and are volunteering to make this site possible for us.
      First of all thank you for your compliment to the moderators, but I have to ask you why you think the problem here is over control from us? I'm perplexed and would like to know why you think this and what can be done to correct this if this is true?

      I have been here since 2009 and yes, MSW was much busier, but with the advent of MSW Facebook (which is busy from what I hear) and more and more online MS forums now, there has been a decrease in activity.

      I am guilty of being an old timer. So many topics I already know the opinions of some of the other old-timers. We get any rut and a deadlock, forgetting about what we are here for. The number one objective in my humble opinion is to be available to the newly diagnosed. That means not only providing information but comfort and love and a place where no one will feel judged.

      I will think about what I can do to make this a better place and I hope other old-timers will look at what they could do to help others, too.

      Don’t give up on us! Demand what you need. We need a knock over the head sometimes.
      As a somewhat old timer, I totally agree here! This is the beauty of MSW.
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #63
        Originally posted by IntoDust View Post
        Is it a common occurrence for certain members of MS World to not only monopolize the boards, dominate the conversation and even get special threads with their username in the title? It’s turning into a bizarre VIP treatment.
        Or is this a rare situation?
        I haven’t been a member for very long so I’m hoping one of the older members can chime in here.
        I haven’t been posting much and to be honest, I’ve been really turned off by what the boards are turning into. I said months ago when I first began posting that I was disappointed but I held out hope that things would turn around. They haven’t. While it’s a little quieter right now, it’s a lull and it will start back up again. It’s a predictable pattern at this point.
        I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?
        Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share.
        Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?
        Hello Palmtree,

        It is so good to hear from you! Here is part of your comment... "I’m sorry that I haven’t been logging on often anymore. So I confess I am not sure what you are referring to. When I was first diagnosed I was on this site constantly. So much information and comfort was there."

        I think some background would be helpful to understanding this thread, Palmtree.

        A few weeks back Pennstater began a thoughtful thread titled ‘Optimism and Pessimism – Disease impact’. It is worth checking out. IntoDust was the first to respond and I think almost everyone shares her perspective on being positive.

        Next to respond was Dasiycat, a young woman diagnosed in the last year, devastated by it, searching for ways to cope and only more recently finding some. Her perspective is far more more pessimistic and she has no qualms about saying so. Daisycat often provokes a great deal of response and therein lies the problem.

        Since response to Daisycat’s pessimism was becoming voluminous, Mamabug, a moderator, wisely began a new thread so Pennstater’s original thread would not be dominated and overwhelmed by response around one person. Mamabug simply titled it, ‘Daisycat – Optimism vs pessimism’. That is the role of a good moderator, IMO. Mamabug had no intention of giving Dasiycat VIP treatment as the title of this thread suggests; she was being considerate of Pennstater’s thread.

        IntoDust addressed this as follows, 'Special Threads for VIP Members'. Do you believe that statement, or inference, is fair to the moderators; to Daisycat? I can only hope the complaint which led to this thread has not driven a stake into the heart of a vulnerable person with MS, but I suspect it may have.

        Personally, I don’t see over-control by moderators here. They pretty much let adults act like adults and children act like children here. Children can be petty, jealous, juvenile, occasionally vicious but seldom as capable disguising those features as adults. However, the salient characteristic of a juvenile is… they just hate to be corrected, don’t they? That, above all, is the mark of a child.

        Moderators need the wisdom of Solomon to keep everyone happy and treating one another decently. I love the moderators here presently. I appreciate the sacrifices they make to do their jobs and I have a ton of respect for them. My life is better because of them, as are many others.

        I hope this explanation is helpful, Palmtree. Again, it is so good to hear from you! I hope you are well and prospering on every level!

        Comment


          #64
          Originally posted by Myoak View Post
          Since response to Daisycat’s pessimism was becoming voluminous, Mamabug, a moderator, wisely began a new thread so Pennstater’s original thread would not be dominated and overwhelmed by response around one person. Mamabug simply titled it, ‘Daisycat – Optimism vs pessimism’. That is the role of a good moderator, IMO. Mamabug had no intention of giving Dasiycat VIP treatment as the title of this thread suggests; she was being considerate of Pennstater’s thread.

          IntoDust addressed this as follows, 'Special Threads for VIP Members'. Do you believe that statement, or inference, is fair to the moderators; to Daisycat? I can only hope the complaint which led to this thread has not driven a stake into the heart of a vulnerable person with MS, but I suspect it may have.
          ^^^^^^^^^^^^^ MS physically changes the central nervous system and can cause emotional and cognitive problems. So why people need to treat DC's process here like a conflict is something to think about.

          And Daisycat has not been the only person on the "Daisy show." That requires a small cast of characters.

          As a new person reading, the personal stories shared here make MSWorld. I'm sure in times when one tries to help and share, to not feel heard is difficult. But to then come back when things get confrontational - repeatedly - with a choir of admonishments and throwing up of hands in frustration before stomping off - that completes the repeating pattern. It just seems hypocritical to participate over and over again then to say the dynamic of too much participation is wrong.

          There are concerns about what visitors to this board are seeing. My take is that it isn't just dark matter from DC, but also DC being treated like a punching bag in certain instances, at points where people could just let things drop.

          Anyway I agree that the moderators have done a great job.
          All the best, ~G

          Comment


            #65
            Originally posted by gargantua View Post
            ^^^^^^^^^^^^^ MS physically changes the central nervous system and can cause emotional and cognitive problems. So why people need to treat DC's process here like a conflict is something to think about.

            And Daisycat has not been the only person on the "Daisy show." That requires a small cast of characters.

            As a new person reading, the personal stories shared here make MSWorld. I'm sure in times when one tries to help and share, to not feel heard is difficult. But to then come back when things get confrontational - repeatedly - with a choir of admonishments and throwing up of hands in frustration before stomping off - that completes the repeating pattern. It just seems hypocritical to participate over and over again then to say the dynamic of too much participation is wrong.

            There are concerns about what visitors to this board are seeing. My take is that it isn't just dark matter from DC, but also DC being treated like a punching bag in certain instances, at points where people could just let things drop.

            Anyway I agree that the moderators have done a great job.
            Very well said.

            This is very interesting especially because I can think of a couple other members over the past year who have garnered quite a bit of attention or whatever we want to call it with their repetitive drama. That is kind of what we are here for, right?

            What perhaps is the most interesting thing to me over the years on different message boards is that my opinions and tolerance of others may change. It is nice to keep an open mind and be pleasantly surprised in the future when I start agreeing with someone who I couldn't fully appreciate in the past.
            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


              #66
              Originally posted by gargantua View Post
              ^^^^^^^^^^^^^

              As a new person reading, the personal stories shared here make MSWorld. I'm sure in times when one tries to help and share, to not feel heard is difficult. But to then come back when things get confrontational - repeatedly - with a choir of admonishments and throwing up of hands in frustration before stomping off - that completes the repeating pattern. It just seems hypocritical to participate over and over again then to say the dynamic of too much participation is wrong.

              There are concerns about what visitors to this board are seeing. My take is that it isn't just dark matter from DC, but also DC being treated like a punching bag in certain instances, at points where people could just let things drop.

              Anyway I agree that the moderators have done a great job.
              A few comments as someone who participated multiple times in multiple threads.

              Part of the reason was not necessarily just for DC, but for any other newly diagnosed searching for information. When posts were overly negative and not grounded in fact, that needs to be challenged. That being said, it shouldn't mean a person individually should be.

              The second part, I stated in a prior post. It basically comes from a place of wanting to help someone else thru a difficult time. But no one here can force someone to accept help. So we shouldn't expect it. If frustrated by the posts, don't respond. But easier said than done.

              Why? Telling people to avoid posts makes it hard to follow when a whole lengthy side conversation is happening and embedded in original posts. If someone is the originator of the post and it is veering off topic with continued posts, then as I did, you can request a separate thread be started. That way, the originator isn't forced to read posts in their own their own thread that aren't related and those that subscribe to a thread likewise, can stay engaged in what they want. Maybe less frustration that way.

              I have been here since 2006 and haven't really noticed changes due to moderation. Yes, mods have changed, but the mods are ever so helpful, knowledgeable, and patient.

              I hope part of the reason for lower traffic is that with newer, more effective drugs, and quicker diagnosis, less relapses are occurring for those diagnosed. I know some of the younger Tysabri infusees, seem to rarely think of MS, aside from medical appts . One can only hope we aren't needed as much!
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #67
                Originally posted by pennstater View Post
                But no one here can force someone to accept help. So we shouldn't expect it. If frustrated by the posts, don't respond. But easier said than done.
                For sure.

                Originally posted by pennstater View Post
                I hope part of the reason for lower traffic is that with newer, more effective drugs, and quicker diagnosis, less relapses are occurring for those diagnosed. I know some of the younger Tysabri infusees, seem to rarely think of MS, aside from medical appts . One can only hope we aren't needed as much!
                New people on Tysabri need you plenty! But I understand your point. It makes sense that the disease course may have changed because new treatments, leading to less traffic. For longtime posters seeing such a slowdown, I imagine it feels bittersweet.
                All the best, ~G

                Comment


                  #68
                  Originally posted by gargantua View Post
                  For sure.
                  It makes sense that the disease course may have changed because new treatments, leading to less traffic. For longtime posters seeing such a slowdown, I imagine it feels bittersweet.
                  In a perfect world, there would be no MS, no slowdown, no traffic, no MSW. Imagine!
                  But, here we are- trying to make the best of it.
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #69
                    Originally posted by Myoak View Post
                    IntoDust addressed this as follows, 'Special Threads for VIP Members'. Do you believe that statement, or inference, is fair to the moderators; to Daisycat? I can only hope the complaint which led to this thread has not driven a stake into the heart of a vulnerable person with MS, but I suspect it may have.
                    Myoak,
                    Your comment suggesting that my complaint and this thread would drive a stake into the heart of a vulnerable person with MS is playing into the perceived victimization this member has already created for herself.
                    This particular member has no qualms about giving her opinion and at times it is more than just 'negative' - she has said things that are outright rude and inconsiderate. I don't need to speak for other's experiences here as the comments speak for themselves, but personally I will not use kid gloves around someone just because they can dish it but not take it.

                    I reached out to this person privately in the hopes that maybe talking one-on-one would be helpful. She later returned to the boards to call it a "waste of time", only to back track when I called her out on it. Obviously my attempt to reach out wasn't successful but to call my effort a waste of time was ungracious, offensive and insensitive.

                    I don't think we should have to walk on eggshells around each other - we're all vulnerable people with MS. Some of us more than others depending on what we're going through at any given moment. But we can't just excuse bad behavior because someone is struggling, nor can we ignore it because someone might get their feelings hurt.
                    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                    Comment


                      #70
                      Originally posted by IntoDust View Post
                      But we can't just excuse bad behavior because someone is struggling, nor can we ignore it because someone might get their feelings hurt.

                      We can if we love them.

                      Comment


                        #71
                        Originally posted by Myoak View Post
                        We can if we love them.
                        So much in a nut shell. Good for you, Myoak.

                        Comment


                          #72
                          I've let this get the best of me. I cannot do that anymore.

                          I think, for me, it's just post after post of someone looking for help but refusing suggestions. I became one of those people, when DC began posting, that thought I could help. Page after page of "Try this" followed by "I will never accept this disease". I kept thinking if I just did this or said this, she would be better able to deal with this disease. We all have tried. I don't give up on people, but I had to remind myself that DC's denial and anger have nothing to do with me or the rejected advice.

                          I need to take this less personally. I did what I could. We all have. I still don't understand what the purpose of multiple threads with multiple pages dedicated to rejecting everyone's ideas. I still don't understand why there is no empathy for other members. We should all be able to look past our own problems and help eachother once in a while. Those are my frustrations.

                          I appreciate everyone's opinion, even if I disagree. I think this board is great. I love coming here. Sometimes I feel guilty because I have a pretty mild case of MS, in comparison, but I enjoy reading the posts. And I know there are people who understand and are empathetic. I hope that my words help someone else. Take care everyone. I will not give up on anyone. I just need to not take the rejection personally.

                          Comment


                            #73
                            Originally posted by kittysmith View Post
                            I think, for me, it's just post after post of someone looking for help but refusing suggestions. I became one of those people, when DC began posting, that thought I could help. Page after page of "Try this" followed by "I will never accept this disease". I kept thinking if I just did this or said this, she would be better able to deal with this disease. We all have tried. I don't give up on people, but I had to remind myself that DC's denial and anger have nothing to do with me or the rejected advice.

                            I need to take this less personally. I did what I could. We all have. I still don't understand what the purpose of multiple threads with multiple pages dedicated to rejecting everyone's ideas. I still don't understand why there is no empathy for other members. We should all be able to look past our own problems and help eachother once in a while. Those are my frustrations.

                            I appreciate everyone's opinion, even if I disagree. I think this board is great. I love coming here. Sometimes I feel guilty because I have a pretty mild case of MS, in comparison, but I enjoy reading the posts. And I know there are people who understand and are empathetic. I hope that my words help someone else. Take care everyone. I will not give up on anyone. I just need to not take the rejection personally.


                            "LIKE". And understand. I have a theory forming about the honesty of this whole mess, but I am afraid to voice it at this time.
                            Marti




                            The only cure for insomnia is to get more sleep.

                            Comment


                              #74
                              Originally posted by Myoak View Post
                              We can if we love them.
                              BOOM.

                              I think that says it all. This thread has run its course and that's just my opinion. Feel free to keep the banter going but I fail to see how this has been productive.
                              The future depends on what you do today.- Gandhi

                              Comment


                                #75
                                Good afternoon everyone!
                                I have to say that i have similar thoughts as intro dust and i, myself, wanted to leave this forum as i was over the shenanigans. I truly believe everyone has the right to their opinion and state how they feel. I also understand your own perception becomes your reality. At the same time the definition of insanity is doing the same thing over and over and expecting different results. I feel i was living in insanity.
                                As someone who is newly diagnosed (well, coming up on a year), i really wanted guidance, advice, pat on the backs or simply an "ear". I have no idea what MS is still. The fatigue i'm feeling, is that MS related? The tingly in my leg, is that the MS? Is Tysabri working? Is anyone else having "insert problem" while on this drug?
                                Instead it's a lot of posts that turn in everyone trying to encourage ONE person to not give up and be positive. A person who does not want to be positive and wants a crappy life. If one does not want a crappy life one does something to fix it. And yes we can not get rid of our MS but we can do things to make life tolerable with it.
                                So i almost walked away because the ONE person was bringing me to a place i didn't want to be.
                                I hope in the future MSW doesn't continue this way because i really hope to find the guidance i seek. I want the "veterans" to give me all the advice they possibly can and i hope that maybe i can also impact their life in same way. But i can't continue to turn to a place for hope and have nothing but black cloud over it.
                                Thank you intro dust for this thread. I agree in theory although it does feed in to the attention (ok i'll say focus so i don't have people hating me) that the ONE person is seeking.
                                Enjoy your day and hopefully a lot of you aren't in this icy rain we at least have going in upstate NY!
                                Dx March 2018; possible first episode: August 2011
                                Tysabri May 2018-June 2019, Mayzent July 2019

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