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MRF wants your opinion!

Forums Caregiver Community MRF wants your opinion!

  • Post
    Anonymous
    Inactive

      Hello everyone,

      Per some recent advice I have decided to post this on the off-topic bulletin board as well…

      We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:

      1.  What would make YOU go into the chat room?

      2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

      Hello everyone,

      Per some recent advice I have decided to post this on the off-topic bulletin board as well…

      We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:

      1.  What would make YOU go into the chat room?

      2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

      3.  If so, what topics would you want to chat about?

      4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

      5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

      We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

      Sincerely,

      Shelby Moneer, MRF Health Educator 

    Viewing 23 reply threads
    • Replies
        Eehgads
        Participant

          The chat regulars initially were in chat as a time to connect with other patients, not always having to focus on their common denominator (the elephant in the room). Melanoma was always the subject when someone came in and wanted to speak about it or had questions. Chatting about Melanoma can be really hard so regulars would chime in with other topic once in awhile. Chat participants ALWAYS made sure someone was addressing Melanoma questions and sharing information.  

          Cliques, whining about cliques from people that never participated or helped in chat, bad behavior, and drama changed the flow of chat and chased people away. The new format is great, helps to ensure the drama stays low. It seems to have chasedaway the people that went in for the daily banter.

          It can't be serious all the time, Your questions show that isn't understood by the MRF. The current format isn't as user friendly. Part of the success of the last chatroom was the ability to get into the chat area easly and READ it. It was big and clear. Now you have to go through several clicks to even find the chatroom, more clicks to get in.

          No easy answer but appreciate your acknowledging the issues and trying.

           

          Eehgads
          Participant

            The chat regulars initially were in chat as a time to connect with other patients, not always having to focus on their common denominator (the elephant in the room). Melanoma was always the subject when someone came in and wanted to speak about it or had questions. Chatting about Melanoma can be really hard so regulars would chime in with other topic once in awhile. Chat participants ALWAYS made sure someone was addressing Melanoma questions and sharing information.  

            Cliques, whining about cliques from people that never participated or helped in chat, bad behavior, and drama changed the flow of chat and chased people away. The new format is great, helps to ensure the drama stays low. It seems to have chasedaway the people that went in for the daily banter.

            It can't be serious all the time, Your questions show that isn't understood by the MRF. The current format isn't as user friendly. Part of the success of the last chatroom was the ability to get into the chat area easly and READ it. It was big and clear. Now you have to go through several clicks to even find the chatroom, more clicks to get in.

            No easy answer but appreciate your acknowledging the issues and trying.

             

            Jerry from Cape Cod
            Participant

              I'm of a different opinion.  The new format and the rushed introduction caused many to stop visiting here.

              The bulletin board format is awkward at the best.  Their is no way to tell which posts you've read in a thread.  Yes you see the # of new replies but not necessarily which are new.  The old format you always knew.

              The amount of posts in the bulletin board and the off-topic are the lowest I've seen since I've been visiting here.

              The chat room was so difficult entering many folks are just staying away now. 

              The MRF in it's effort to "sanitize" the community by rushing the changes with (in my opinion) a web design firm that apparently had very little experience integrating from one format to another has damaged the community.  Again, my opinion, but it will take a couple of years to regrow with new users. Unfortunately, there are more being added every day.

              Per some recent advice I have decided to post this on the off-topic bulletin board as well…

              "We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:"

              As I've mentioned our opinions about thriving are silk purse or sow's ear

               

              1.  What would make YOU go into the chat room?

              Interesting people using it.  Also, an entry that does not go so fast that you can't regularly open the chat in a pop up.

              2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

              no, we have participants from all over the world.  who do we schedule for.

              3.  If so, what topics would you want to chat about?

              N /A it should be free wheeling

              4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

              N/A

              5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

              N/A

              We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

              Sincerely,

              Shelby Moneer, MRF Health Educator

              As I've mentioned many times, perhaps to Tim's chagrin it's a pretty website with a pretty but antiseptic community. I only come here because I have some experiences that may help others, but I don't post a tenth of what I did before the changes in format and the changes in participation.

              Jerry from Cape Cod

                Anonymous
                Inactive

                  I appreciate the feedback from both of you.  We really want to drive patients to the both the bulletin board and the chat room…for their benefit, not for ours.  Unfortunately, financially we are unable to completely re-vamp the website all over again.  I understand your frustrations but we are trying to focus on the problems we are able to fix right now or in the near future.  Our hope is that by scheduling some regular chats we will, in turn, drive people to the chat room on their own, to talk about whatever they want.  Thank you again for your responses.

                  Shelby – MRF

                  Anonymous
                  Inactive

                    I appreciate the feedback from both of you.  We really want to drive patients to the both the bulletin board and the chat room…for their benefit, not for ours.  Unfortunately, financially we are unable to completely re-vamp the website all over again.  I understand your frustrations but we are trying to focus on the problems we are able to fix right now or in the near future.  Our hope is that by scheduling some regular chats we will, in turn, drive people to the chat room on their own, to talk about whatever they want.  Thank you again for your responses.

                    Shelby – MRF

                    LizzM
                    Participant

                      I would have to agree with Jerry. Many of the regulars are gone because the format is so cumbersome to use. The most frustrating thing to me is that (as Jerry stated) after opening a post, you can't tell which are the new posts. So you have to skim them all to see which ones you might have already read. Oftentimes, this is just too frustating and I give up. At first I thought when it showed the names of the people who posted on the right of the orginal screen that maybe if there were 3 new replies we could just click on those first 3 names and find their posts. BUT if you click on their names you find their profiles. No help whatsoever. I believe most of the regulars keep up with each other on Facebook or through email groups which is a shame because thei board has lost a wealth of knowledge in losting these people. So I think saying the bulletin board is quite a stretch.

                      The Off-Topic Board is almost nonexistent. It used to be so enjoyable to be able to discuss things other than melanoma and have fun, witty conversations. I am aware it did get out of hand sometimes but that is too be expected and seemed to be taken care of quickly. Now I think it is so sterile and blah that no one even ventures much any more. A few have tried to keep it going but it is just not working.

                      I am not a char room person but I think most people don;t want scheduled chats about melanoma topics. They want to go there to laugh and enjoy fellowship with people facing simliar situations. Of course, it was also used to answer melanoma questions and I always heard that this took precedence over the funny banter every single time.

                      If I had a vote and I know I don't, I would vote for bringing the old board back. MUCH easier to use and a much more friendly place to interact both on the main board and off-topic board and also in chat.

                      We do appreciate your interest in the boards though. I just hope they can be made easier to navigate so the old-timers will return.

                       

                       

                       

                      Jocelyn
                      Participant

                        I agree that we don't really need to have scheduled topics, as the relevant topics come up on their own as patients enter the room. And it IS true that the chat regulars, who often discuss non-melanoma issues, have always turned their attention to the patient who enters the room with melanoma concerns.

                        On the other hand, it wouldn't hurt to have a scheduled topic now and then. Sometimes good topics come up on the main board that could use extended attention, and it might be good to hash them out in real time. Or topics that come up in the news, things like that.  Or a focus on a drug that we don't all understand that well.

                        Jocelyn
                        Participant

                          I agree that we don't really need to have scheduled topics, as the relevant topics come up on their own as patients enter the room. And it IS true that the chat regulars, who often discuss non-melanoma issues, have always turned their attention to the patient who enters the room with melanoma concerns.

                          On the other hand, it wouldn't hurt to have a scheduled topic now and then. Sometimes good topics come up on the main board that could use extended attention, and it might be good to hash them out in real time. Or topics that come up in the news, things like that.  Or a focus on a drug that we don't all understand that well.

                          LizzM
                          Participant

                            I would have to agree with Jerry. Many of the regulars are gone because the format is so cumbersome to use. The most frustrating thing to me is that (as Jerry stated) after opening a post, you can't tell which are the new posts. So you have to skim them all to see which ones you might have already read. Oftentimes, this is just too frustating and I give up. At first I thought when it showed the names of the people who posted on the right of the orginal screen that maybe if there were 3 new replies we could just click on those first 3 names and find their posts. BUT if you click on their names you find their profiles. No help whatsoever. I believe most of the regulars keep up with each other on Facebook or through email groups which is a shame because thei board has lost a wealth of knowledge in losting these people. So I think saying the bulletin board is quite a stretch.

                            The Off-Topic Board is almost nonexistent. It used to be so enjoyable to be able to discuss things other than melanoma and have fun, witty conversations. I am aware it did get out of hand sometimes but that is too be expected and seemed to be taken care of quickly. Now I think it is so sterile and blah that no one even ventures much any more. A few have tried to keep it going but it is just not working.

                            I am not a char room person but I think most people don;t want scheduled chats about melanoma topics. They want to go there to laugh and enjoy fellowship with people facing simliar situations. Of course, it was also used to answer melanoma questions and I always heard that this took precedence over the funny banter every single time.

                            If I had a vote and I know I don't, I would vote for bringing the old board back. MUCH easier to use and a much more friendly place to interact both on the main board and off-topic board and also in chat.

                            We do appreciate your interest in the boards though. I just hope they can be made easier to navigate so the old-timers will return.

                             

                             

                             

                          Jerry from Cape Cod
                          Participant

                            I'm of a different opinion.  The new format and the rushed introduction caused many to stop visiting here.

                            The bulletin board format is awkward at the best.  Their is no way to tell which posts you've read in a thread.  Yes you see the # of new replies but not necessarily which are new.  The old format you always knew.

                            The amount of posts in the bulletin board and the off-topic are the lowest I've seen since I've been visiting here.

                            The chat room was so difficult entering many folks are just staying away now. 

                            The MRF in it's effort to "sanitize" the community by rushing the changes with (in my opinion) a web design firm that apparently had very little experience integrating from one format to another has damaged the community.  Again, my opinion, but it will take a couple of years to regrow with new users. Unfortunately, there are more being added every day.

                            Per some recent advice I have decided to post this on the off-topic bulletin board as well…

                            "We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:"

                            As I've mentioned our opinions about thriving are silk purse or sow's ear

                             

                            1.  What would make YOU go into the chat room?

                            Interesting people using it.  Also, an entry that does not go so fast that you can't regularly open the chat in a pop up.

                            2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

                            no, we have participants from all over the world.  who do we schedule for.

                            3.  If so, what topics would you want to chat about?

                            N /A it should be free wheeling

                            4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

                            N/A

                            5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

                            N/A

                            We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

                            Sincerely,

                            Shelby Moneer, MRF Health Educator

                            As I've mentioned many times, perhaps to Tim's chagrin it's a pretty website with a pretty but antiseptic community. I only come here because I have some experiences that may help others, but I don't post a tenth of what I did before the changes in format and the changes in participation.

                            Jerry from Cape Cod

                            KyCyn
                            Participant

                              Hi, Shelby!

                              I've been coming to the MPIP website for eons – actually, for at least 6 or more years… like others, I really yearn and miss the 'good old days,' but we all know we can never go back.

                              With that being said, perhaps the OTBB isn't even really needed on this website?  If you want people to talk about subjects other than mm, then it should be wide-open.  Of course, that is what the DS was and we see how some people liked that πŸ˜‰  Therefore, perhaps this website should just be melanoma related.

                              As far as chat goes, I've never been there (just no interest), but I might visit if there were certain topics and/or 'hosts,' so-to-speak.  For example, have a derm host it at a certain time, geared towards Stage I patients (or II, etc…)  Another time, have a nutritionist as a host to talk about diet and cancer.  Question/answer sessions with people would be great!

                               

                              Thanks for it all,

                               

                              Cynthia

                               

                               

                              KyCyn
                              Participant

                                Hi, Shelby!

                                I've been coming to the MPIP website for eons – actually, for at least 6 or more years… like others, I really yearn and miss the 'good old days,' but we all know we can never go back.

                                With that being said, perhaps the OTBB isn't even really needed on this website?  If you want people to talk about subjects other than mm, then it should be wide-open.  Of course, that is what the DS was and we see how some people liked that πŸ˜‰  Therefore, perhaps this website should just be melanoma related.

                                As far as chat goes, I've never been there (just no interest), but I might visit if there were certain topics and/or 'hosts,' so-to-speak.  For example, have a derm host it at a certain time, geared towards Stage I patients (or II, etc…)  Another time, have a nutritionist as a host to talk about diet and cancer.  Question/answer sessions with people would be great!

                                 

                                Thanks for it all,

                                 

                                Cynthia

                                 

                                 

                                Jerry from Cape Cod
                                Participant

                                  I'll be a bit of a stick in the mud about scheduled chat with topics and a moderator.  Have you thought about the mechanics of such an arrangement?  It's hard enough to follow 4 or 5 people in there and the posts jump so quickly.  Can you imagine 10 or more.  You would never be able to keep up with the relevant comments from the host/moderator.

                                  I think schedule topics work fine for webcasts and conference calls otherwise a chat conference is a waste UNLESS you have a system that keeps the host/moderators comments on a separate window on the page so one can follow the flow, otherwise the questions and comments from the open chat would swamp the screen.

                                  As far as scheduled open chat with a moderator it might work for new visitors.

                                  As others have said there are other communication venues available and many have settled in and found a voice.  Some of us will stick around, but it looks like the real resourses that made MPIP have drifted off to other venues.. 

                                  In a few years this will bounce back.  It might be faster if we could return to a form of the older system which was far more user friendly.

                                  Just calling like I see it, I don't have a dog in the race.  The existance of this site won't make a difference in my specific treatement or my future.  I will find satisfaction finding other places to help folks with the knowledge I have gathered over my history with mel.

                                  Jerry from Cape Cod

                                  Jerry from Cape Cod
                                  Participant

                                    I'll be a bit of a stick in the mud about scheduled chat with topics and a moderator.  Have you thought about the mechanics of such an arrangement?  It's hard enough to follow 4 or 5 people in there and the posts jump so quickly.  Can you imagine 10 or more.  You would never be able to keep up with the relevant comments from the host/moderator.

                                    I think schedule topics work fine for webcasts and conference calls otherwise a chat conference is a waste UNLESS you have a system that keeps the host/moderators comments on a separate window on the page so one can follow the flow, otherwise the questions and comments from the open chat would swamp the screen.

                                    As far as scheduled open chat with a moderator it might work for new visitors.

                                    As others have said there are other communication venues available and many have settled in and found a voice.  Some of us will stick around, but it looks like the real resourses that made MPIP have drifted off to other venues.. 

                                    In a few years this will bounce back.  It might be faster if we could return to a form of the older system which was far more user friendly.

                                    Just calling like I see it, I don't have a dog in the race.  The existance of this site won't make a difference in my specific treatement or my future.  I will find satisfaction finding other places to help folks with the knowledge I have gathered over my history with mel.

                                    Jerry from Cape Cod

                                    Janner
                                    Participant

                                      I used to be a chat regular.  I never go in there now. 

                                      I use a netbook and with all the LARGE menu headers (that should collapse but don't), I have to scroll to see if someone is in the chat room.  It never happens.  Somehow, it needs to be OBVIOUS and EASY.  It's neither right now.  It is so integrated into the side menu that it doesn't stand out.  I forget it is even there.  I also cannot open it up in a popup as intended.  That restricts me from multitasking which I also did regularly while in chat.  I also can't see the status window when I'm posting a reply like I'm doing right now.   It used to be that I could see the chat status even when replying on the BB.  If someone popped in by themselves, I could jump in to chat and respond immediately, then post my BB reply later or simultaneously if chat is in a popup. 

                                      Scheduled chats?  Maybe.  Nice on occasion if it is well publicized.  But that isn't what will keep the chat room going and vibrant.

                                      The new bulletin board format is not as friendly.  I contributed a lot of ideas prior to it being built, but it didn't quite turn out as I had hoped.  Again, too much clicking and scrolling to be overly friendly.  I find myself bypassing the site more and more and only looking at the first 2 or 3 topics because that's all I can see without a lot of scrolling.  I used to post FREQUENTLY.

                                      You find many people who come here are NOT computer literate.  They are newly diagnosed and forced to figure out the computer, the internet, and how best to search for answers all during a very stressful time.  Count the clicks it takes to post on the BB or enter chat.  My advice is to make it LESS clicks and more obvious.

                                       

                                      Janner

                                      Janner
                                      Participant

                                        I used to be a chat regular.  I never go in there now. 

                                        I use a netbook and with all the LARGE menu headers (that should collapse but don't), I have to scroll to see if someone is in the chat room.  It never happens.  Somehow, it needs to be OBVIOUS and EASY.  It's neither right now.  It is so integrated into the side menu that it doesn't stand out.  I forget it is even there.  I also cannot open it up in a popup as intended.  That restricts me from multitasking which I also did regularly while in chat.  I also can't see the status window when I'm posting a reply like I'm doing right now.   It used to be that I could see the chat status even when replying on the BB.  If someone popped in by themselves, I could jump in to chat and respond immediately, then post my BB reply later or simultaneously if chat is in a popup. 

                                        Scheduled chats?  Maybe.  Nice on occasion if it is well publicized.  But that isn't what will keep the chat room going and vibrant.

                                        The new bulletin board format is not as friendly.  I contributed a lot of ideas prior to it being built, but it didn't quite turn out as I had hoped.  Again, too much clicking and scrolling to be overly friendly.  I find myself bypassing the site more and more and only looking at the first 2 or 3 topics because that's all I can see without a lot of scrolling.  I used to post FREQUENTLY.

                                        You find many people who come here are NOT computer literate.  They are newly diagnosed and forced to figure out the computer, the internet, and how best to search for answers all during a very stressful time.  Count the clicks it takes to post on the BB or enter chat.  My advice is to make it LESS clicks and more obvious.

                                         

                                        Janner

                                        LV
                                        Participant

                                          There is one other thing about chat. Jerry (from Fauq) would often just hang out there, so if a newcomer showed up, there was someone there. And the oldtimers might stop by to say Hi. So it wasn't just a vacant room all the time, like it is now. I think that was very helpful, and don't know if you guys at MRF realized how generous he was with his time.

                                          So, two things. One – there needs to be someone logged into chat, especially in the evenings, for the benefit of newcomers especially. Often newbies show up looking to connect with others, and find a warm community waiting for them.

                                          And two – maybe the fact that there IS a chat room needs to be more heavily featured on the first page. Let people know that if they need answers, or just to connect personally with someone else in a similar boat, then Chat is just waiting for them. Make it easy to get into.

                                          And maybe promote a Chat Party, or some such, at a certain day and time to encourage everyone to check it out.

                                          Also, those of us who are interested in maintaining the comaraderie need to get off our duffs and show up to provide some support. If you're just checking the posts, log in to Chat while you're here. MRF can't make it all happen, even though they did undo a lot of the personality of the thing.

                                          LV
                                          Participant

                                            There is one other thing about chat. Jerry (from Fauq) would often just hang out there, so if a newcomer showed up, there was someone there. And the oldtimers might stop by to say Hi. So it wasn't just a vacant room all the time, like it is now. I think that was very helpful, and don't know if you guys at MRF realized how generous he was with his time.

                                            So, two things. One – there needs to be someone logged into chat, especially in the evenings, for the benefit of newcomers especially. Often newbies show up looking to connect with others, and find a warm community waiting for them.

                                            And two – maybe the fact that there IS a chat room needs to be more heavily featured on the first page. Let people know that if they need answers, or just to connect personally with someone else in a similar boat, then Chat is just waiting for them. Make it easy to get into.

                                            And maybe promote a Chat Party, or some such, at a certain day and time to encourage everyone to check it out.

                                            Also, those of us who are interested in maintaining the comaraderie need to get off our duffs and show up to provide some support. If you're just checking the posts, log in to Chat while you're here. MRF can't make it all happen, even though they did undo a lot of the personality of the thing.

                                            bcl
                                            Participant

                                              I agree with Jerry, this place might look pretty but it's frustratingly sterile and cumbersome  – hardly desirable features on a cancer board. But I really am am fed up complaining about it – wrote in suggestions and posted here, but nothing significant improves. . ( yes we have spell ck and can post pics, but the problems run far deeper than that.)  We attract  people from all walks of life, some who may be turning to the internet for the first time ( such people do exist, and they do get cancer). Too much up front info is worse than not enough for someone like that – just look around you, this site is on steroids (no offence to anyone on steroids).  And loosing the ability to change the subject and convey pertinent information within a thread (or ask questions and draw people in with similar experiences)  is nothing short of a travesty.  In your zeal to fix a 'problem' you have thrown the baby out with the bath water. I'm sorry if this sounds angry,  I just feel so frustrated by your everything is going fine attitude when I feel it is not.     linda

                                              bcl
                                              Participant

                                                I agree with Jerry, this place might look pretty but it's frustratingly sterile and cumbersome  – hardly desirable features on a cancer board. But I really am am fed up complaining about it – wrote in suggestions and posted here, but nothing significant improves. . ( yes we have spell ck and can post pics, but the problems run far deeper than that.)  We attract  people from all walks of life, some who may be turning to the internet for the first time ( such people do exist, and they do get cancer). Too much up front info is worse than not enough for someone like that – just look around you, this site is on steroids (no offence to anyone on steroids).  And loosing the ability to change the subject and convey pertinent information within a thread (or ask questions and draw people in with similar experiences)  is nothing short of a travesty.  In your zeal to fix a 'problem' you have thrown the baby out with the bath water. I'm sorry if this sounds angry,  I just feel so frustrated by your everything is going fine attitude when I feel it is not.     linda

                                                TinaR
                                                Participant

                                                  1.  What would make YOU go into the chat room?   If it were easier to use, certain people were not directing traffic-  admonishing others in the room where to direct their attention, what their conversation should be , demanding you sit at the ready while people decided what they wanted to type and the insistance that there be ONLY one "conversation" at a time going on—just generally sucking the joy out of every moment πŸ™‚

                                                  2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Yes, depending on the atmosphere—created by the participants.

                                                  3.  If so, what topics would you want to chat about?  You pay the bills– you get to decide.

                                                  4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Your choice, but the board is where we hear from patients and caregivers,,,, so maybe something new and informative- doctors, researchers, Tim .

                                                  5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc?. Maybe once or twice  month would be something to look forward to …and the info posted where people could see it…although, the pages are so darn crowded I get an ADHD headache every time I log on- overwhelmed.

                                                   

                                                  Chat WAS manned (by multiple patients )  most nights of the week…. I remember from 2002 until late 2008- maybe very early 2009. The chat usually had all stages represented — caregivers and patients.  Now? Zero. The  recent board glitches and the dry consultation room atmosphere brought it to a halt. There has to be a social component to keep those who are well enough to commit their time to the project ( and it was a volunteer project for many of us).  

                                                    jag
                                                    Participant

                                                      smileycheekyHmmm, somebody certainly has a bee in their bonnet.  Personally, I could do without the chat completely as long as we get to keep the emoticons.yes  Aren't their any that give the middle finger?

                                                      TinaR
                                                      Participant

                                                        angelA bee in my bonnet? No, but I do have a pain in the ass who follows me around  wink On that note–you seem to think you get to decide a person's motivation , participation, opinion – even their very presence.   Far be it from me to complain about your right to be as much of a nudge as you choose….apparently it's your version of charm and I wouldn't want to deny you your fun.angel  Of course, I'm not going to give you free reign to define me or my choices — more of that wacky crap based upon your Fun-house mirror version of Christian values and behavior —cheekyLooney Tunes, for sure wink

                                                        enlightenedOh, and for the record…call your moderator friendssurprise– I stated my opinion ONCE in this thread…there's no bee in MY bonnet. kissheartkissheartkiss ~ so many cause I know how much you love them kiss.

                                                        TinaR
                                                        Participant

                                                          angelA bee in my bonnet? No, but I do have a pain in the ass who follows me around  wink On that note–you seem to think you get to decide a person's motivation , participation, opinion – even their very presence.   Far be it from me to complain about your right to be as much of a nudge as you choose….apparently it's your version of charm and I wouldn't want to deny you your fun.angel  Of course, I'm not going to give you free reign to define me or my choices — more of that wacky crap based upon your Fun-house mirror version of Christian values and behavior —cheekyLooney Tunes, for sure wink

                                                          enlightenedOh, and for the record…call your moderator friendssurprise– I stated my opinion ONCE in this thread…there's no bee in MY bonnet. kissheartkissheartkiss ~ so many cause I know how much you love them kiss.

                                                          jag
                                                          Participant

                                                            moderator friendssurprise? wha? you are so easy to wind upangry crazy liberal whinercrying

                                                            jag
                                                            Participant

                                                              moderator friendssurprise? wha? you are so easy to wind upangry crazy liberal whinercrying

                                                              TinaR
                                                              Participant

                                                                Disagreeing with you isn't getting wound up …but it's always fun to see you play the labeling game. You should take another name or twenty and say the same thing over and over  to make it stick!

                                                                But it's nice to see you still employing the same tactics- some things NEVER change. We should take some comfort from your rock steady personality foibles !   Wacky religious fanatic  wink— they don't have an emoticon to represent hypocritical, blasphemous, fussy ladyboys frown

                                                                TinaR
                                                                Participant

                                                                  Disagreeing with you isn't getting wound up …but it's always fun to see you play the labeling game. You should take another name or twenty and say the same thing over and over  to make it stick!

                                                                  But it's nice to see you still employing the same tactics- some things NEVER change. We should take some comfort from your rock steady personality foibles !   Wacky religious fanatic  wink— they don't have an emoticon to represent hypocritical, blasphemous, fussy ladyboys frown

                                                                  jag
                                                                  Participant

                                                                    It's kind of hard to miss Amy with you around.  smiley  

                                                                    jag
                                                                    Participant

                                                                      It's kind of hard to miss Amy with you around.  smiley  

                                                                      jag
                                                                      Participant

                                                                        I should have known better to mistake a bee in your bonnet  for the hornet's nest in your head.

                                                                        TinaR
                                                                        Participant

                                                                          You just can't stand it when a woman speaks her mind, can you, John? You have to characterize her or her opinion in nasty or demeaning terms, but your dysfunctional methods of communication should go without label and notice? Hardly.

                                                                          Your  marginalization tactics are tedious…but at least someone's posting!

                                                                          jag
                                                                          Participant

                                                                            off of the meds agaiin?

                                                                            jag
                                                                            Participant

                                                                              off of the meds agaiin?

                                                                              TinaR
                                                                              Participant

                                                                                You just can't stand it when a woman speaks her mind, can you, John? You have to characterize her or her opinion in nasty or demeaning terms, but your dysfunctional methods of communication should go without label and notice? Hardly.

                                                                                Your  marginalization tactics are tedious…but at least someone's posting!

                                                                                jag
                                                                                Participant

                                                                                  I should have known better to mistake a bee in your bonnet  for the hornet's nest in your head.

                                                                                  TinaR
                                                                                  Participant

                                                                                    Oh John, you keep hitting the old notes…it still sounds like crap.  You're man enough to dish it out, be man enough to take it wink

                                                                                    Always dredging up the Amster when looking for validation/support for your stance, eh John? Tsk Tsk Tsk.  For a change from your Republican/Catholic antics… try inclusion. I know it's difficult to deal with people who don't believe the things you do, who don't defer to you or reward/use you for your childish, tantruming behavior. Until they rename this the JAG BOARD…everyone is welcome to read and post here….whether their personality meshes with yours or not– even the board fav whipping gal Amy.  You're approval or religious requirements hold no weight …it's only about a connection to Melanoma. EVERYONE related to the disease…patients, caregivers- even obnoxious family members.

                                                                                     Let the hate go…this targeted campaign has devastated enough…

                                                                                    jag
                                                                                    Participant

                                                                                      obviously you still have the same "hate list"

                                                                                      TinaR
                                                                                      Participant

                                                                                        No hate list here, John. I love chatting with everyone…even you. I don't hate or exclude…I'm a Democrat- feel the love. I don't think a difference of opinion is HATE. I didn't feel the need to comment on YOUR opinion to Shelby, I didn't  bring up Amy or complain about a bee, bonnet or hornet's nest brain. 

                                                                                        If you don't want someone to comment on your rudeness to them…don't be rude!

                                                                                        jag
                                                                                        Participant

                                                                                          you clearly said "hate list"

                                                                                          TinaR
                                                                                          Participant

                                                                                            Oh you and your circular arguments—BUT unlike the old board on THIS board you can read up to check your misrepresentations of fact.

                                                                                            *I* didn't  bring the words hate list to this convo…I just repeated your mention in my reply.  You need to alter your technique of shady quotes and tyranny…it's not going to work for you with the new format- you can do it!  cheeky

                                                                                            jag
                                                                                            Participant

                                                                                              You are nuts.

                                                                                              TinaR
                                                                                              Participant

                                                                                                Ah, yes,  taking the easy way out by labeling / name-calling . Pathetic, John, but understandable heartkissbroken heartkissheart

                                                                                                TinaR
                                                                                                Participant

                                                                                                  Ah, yes,  taking the easy way out by labeling / name-calling . Pathetic, John, but understandable heartkissbroken heartkissheart

                                                                                                  jag
                                                                                                  Participant

                                                                                                    You are nuts.

                                                                                                    TinaR
                                                                                                    Participant

                                                                                                      Oh you and your circular arguments—BUT unlike the old board on THIS board you can read up to check your misrepresentations of fact.

                                                                                                      *I* didn't  bring the words hate list to this convo…I just repeated your mention in my reply.  You need to alter your technique of shady quotes and tyranny…it's not going to work for you with the new format- you can do it!  cheeky

                                                                                                      LV
                                                                                                      Participant

                                                                                                        Aw, did you guys stage a spat just to bring back a ittle of the old spirit? Now that's what's been missing.

                                                                                                        I could give a review of last night's Neil Young concert. Allen Toussaint was the opening act, which was extremely cool.

                                                                                                        Long may you run (which, sadly, was not performed).

                                                                                                        TinaR
                                                                                                        Participant

                                                                                                          You should review! ( but it might inspire me to post one of my insipid music videos…)

                                                                                                          TinaR
                                                                                                          Participant

                                                                                                            You should review! ( but it might inspire me to post one of my insipid music videos…)

                                                                                                            LV
                                                                                                            Participant

                                                                                                              Aw, did you guys stage a spat just to bring back a ittle of the old spirit? Now that's what's been missing.

                                                                                                              I could give a review of last night's Neil Young concert. Allen Toussaint was the opening act, which was extremely cool.

                                                                                                              Long may you run (which, sadly, was not performed).

                                                                                                              jag
                                                                                                              Participant

                                                                                                                you clearly said "hate list"

                                                                                                                TinaR
                                                                                                                Participant

                                                                                                                  No hate list here, John. I love chatting with everyone…even you. I don't hate or exclude…I'm a Democrat- feel the love. I don't think a difference of opinion is HATE. I didn't feel the need to comment on YOUR opinion to Shelby, I didn't  bring up Amy or complain about a bee, bonnet or hornet's nest brain. 

                                                                                                                  If you don't want someone to comment on your rudeness to them…don't be rude!

                                                                                                                  jag
                                                                                                                  Participant

                                                                                                                    obviously you still have the same "hate list"

                                                                                                                    TinaR
                                                                                                                    Participant

                                                                                                                      Oh John, you keep hitting the old notes…it still sounds like crap.  You're man enough to dish it out, be man enough to take it wink

                                                                                                                      Always dredging up the Amster when looking for validation/support for your stance, eh John? Tsk Tsk Tsk.  For a change from your Republican/Catholic antics… try inclusion. I know it's difficult to deal with people who don't believe the things you do, who don't defer to you or reward/use you for your childish, tantruming behavior. Until they rename this the JAG BOARD…everyone is welcome to read and post here….whether their personality meshes with yours or not– even the board fav whipping gal Amy.  You're approval or religious requirements hold no weight …it's only about a connection to Melanoma. EVERYONE related to the disease…patients, caregivers- even obnoxious family members.

                                                                                                                       Let the hate go…this targeted campaign has devastated enough…

                                                                                                                      jag
                                                                                                                      Participant

                                                                                                                        smileycheekyHmmm, somebody certainly has a bee in their bonnet.  Personally, I could do without the chat completely as long as we get to keep the emoticons.yes  Aren't their any that give the middle finger?

                                                                                                                      TinaR
                                                                                                                      Participant

                                                                                                                        1.  What would make YOU go into the chat room?   If it were easier to use, certain people were not directing traffic-  admonishing others in the room where to direct their attention, what their conversation should be , demanding you sit at the ready while people decided what they wanted to type and the insistance that there be ONLY one "conversation" at a time going on—just generally sucking the joy out of every moment πŸ™‚

                                                                                                                        2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Yes, depending on the atmosphere—created by the participants.

                                                                                                                        3.  If so, what topics would you want to chat about?  You pay the bills– you get to decide.

                                                                                                                        4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Your choice, but the board is where we hear from patients and caregivers,,,, so maybe something new and informative- doctors, researchers, Tim .

                                                                                                                        5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc?. Maybe once or twice  month would be something to look forward to …and the info posted where people could see it…although, the pages are so darn crowded I get an ADHD headache every time I log on- overwhelmed.

                                                                                                                         

                                                                                                                        Chat WAS manned (by multiple patients )  most nights of the week…. I remember from 2002 until late 2008- maybe very early 2009. The chat usually had all stages represented — caregivers and patients.  Now? Zero. The  recent board glitches and the dry consultation room atmosphere brought it to a halt. There has to be a social component to keep those who are well enough to commit their time to the project ( and it was a volunteer project for many of us).  

                                                                                                                        jag
                                                                                                                        Participant

                                                                                                                           Well, I'm not a trouble maker, but, I can't help but feel that this site discriminates against muslims and latinos.  One useful addition would be a moderator who can translate for them.  They get melanoma too.crying

                                                                                                                            Nad T
                                                                                                                            Participant

                                                                                                                              .. / …. . .- .-. / -.– — ..- / .— — …. -. .-.-.- / -.. .. -.. -. .—-. – / — -… .- — .- / .–. .-. — — .. … . / – …. .. … ..–.. / .–. … … – .-.-.- .-.-.- .-.-.- – .. -. .- / .. … / .-. . .- .-.. .-.. -.– / .–. .- -. -.. .. -.-. ..- .-.. .- – .. — -. .-.-.- / -.- . . .–. / .. – / .- / … . -.-. .-. . – .-.-.- / — …- . .-. / .- -. -.. / — ..- – .-.-.-

                                                                                                                              TinaR
                                                                                                                              Participant

                                                                                                                                The word is rarely used as a  noun, but okay. What are you going on about and why?

                                                                                                                                TinaR
                                                                                                                                Participant

                                                                                                                                   the message ^ ^ was a reply to the post by NAD T. 

                                                                                                                                  Another format glitch. How can you follow  threads when the message is distant from the reply and found off  page and  directly under the [ultimately] unrelated subject post? Not a good format for social interaction ):

                                                                                                                                  TinaR
                                                                                                                                  Participant

                                                                                                                                     the message ^ ^ was a reply to the post by NAD T. 

                                                                                                                                    Another format glitch. How can you follow  threads when the message is distant from the reply and found off  page and  directly under the [ultimately] unrelated subject post? Not a good format for social interaction ):

                                                                                                                                    TinaR
                                                                                                                                    Participant

                                                                                                                                      The word is rarely used as a  noun, but okay. What are you going on about and why?

                                                                                                                                      Nad T
                                                                                                                                      Participant

                                                                                                                                        .. / …. . .- .-. / -.– — ..- / .— — …. -. .-.-.- / -.. .. -.. -. .—-. – / — -… .- — .- / .–. .-. — — .. … . / – …. .. … ..–.. / .–. … … – .-.-.- .-.-.- .-.-.- – .. -. .- / .. … / .-. . .- .-.. .-.. -.– / .–. .- -. -.. .. -.-. ..- .-.. .- – .. — -. .-.-.- / -.- . . .–. / .. – / .- / … . -.-. .-. . – .-.-.- / — …- . .-. / .- -. -.. / — ..- – .-.-.-

                                                                                                                                      jag
                                                                                                                                      Participant

                                                                                                                                         Well, I'm not a trouble maker, but, I can't help but feel that this site discriminates against muslims and latinos.  One useful addition would be a moderator who can translate for them.  They get melanoma too.crying

                                                                                                                                        NicOz
                                                                                                                                        Participant

                                                                                                                                           

                                                                                                                                          1.  What would make YOU go into the chat room?

                                                                                                                                          …. *still thinking*…. nope. I got nothin'

                                                                                                                                          2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

                                                                                                                                          Possibly. Unlikely due to time difference, but I MIGHT read a transcript of something that interested me

                                                                                                                                          3.  If so, what topics would you want to chat about?

                                                                                                                                          Cocktails and cocktail recipes, and the current drink of choice (as I previously used to go in there for)

                                                                                                                                          4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

                                                                                                                                          Anyone who knows any mean cocktails they'd like to share.

                                                                                                                                          5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

                                                                                                                                          Cocktails? Daily for sure. Anything else… probably monthly.

                                                                                                                                           

                                                                                                                                          Speaking of which- 90 mins til cocktail hour here. Woohoo. I'm on the count down. See? People DO think about things other than melanoma!!  πŸ˜€

                                                                                                                                          NicOz
                                                                                                                                          Participant

                                                                                                                                             

                                                                                                                                            1.  What would make YOU go into the chat room?

                                                                                                                                            …. *still thinking*…. nope. I got nothin'

                                                                                                                                            2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

                                                                                                                                            Possibly. Unlikely due to time difference, but I MIGHT read a transcript of something that interested me

                                                                                                                                            3.  If so, what topics would you want to chat about?

                                                                                                                                            Cocktails and cocktail recipes, and the current drink of choice (as I previously used to go in there for)

                                                                                                                                            4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

                                                                                                                                            Anyone who knows any mean cocktails they'd like to share.

                                                                                                                                            5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

                                                                                                                                            Cocktails? Daily for sure. Anything else… probably monthly.

                                                                                                                                             

                                                                                                                                            Speaking of which- 90 mins til cocktail hour here. Woohoo. I'm on the count down. See? People DO think about things other than melanoma!!  πŸ˜€

                                                                                                                                              dian in spokane
                                                                                                                                              Participant

                                                                                                                                                hey! we drink in chat! I'll talk cocktails with you ANY TIME GIRL!

                                                                                                                                                hell…last night Kevin called us "Bar Hags" …even though I might have been the only one actually pouring some booze down my throat during chat.

                                                                                                                                                I saw you in there once…

                                                                                                                                                dian

                                                                                                                                                TinaR
                                                                                                                                                Participant

                                                                                                                                                  Yeah, bar hags is hardly the way to win friends and influence people! It makes "Chat Bitches" seem darling !

                                                                                                                                                  TinaR
                                                                                                                                                  Participant

                                                                                                                                                    Yeah, bar hags is hardly the way to win friends and influence people! It makes "Chat Bitches" seem darling !

                                                                                                                                                    dian in spokane
                                                                                                                                                    Participant

                                                                                                                                                      hey! we drink in chat! I'll talk cocktails with you ANY TIME GIRL!

                                                                                                                                                      hell…last night Kevin called us "Bar Hags" …even though I might have been the only one actually pouring some booze down my throat during chat.

                                                                                                                                                      I saw you in there once…

                                                                                                                                                      dian

                                                                                                                                                    MarieM
                                                                                                                                                    Participant

                                                                                                                                                      My two cents:

                                                                                                                                                      1. What woud make YOU go into the chat room?

                                                                                                                                                      Bring back the old format

                                                                                                                                                      2. Would you drop in the chat room if we had scheduled guests chattingh about various topics?

                                                                                                                                                      If the topic was interesting enough.

                                                                                                                                                      3. If so what would you want to chat about?

                                                                                                                                                      Treatments having success, new information on treatments, new stats, clinical trial information (it is what I always felt was the MOST important information here.)

                                                                                                                                                      4. Anyone with knowledge on the topic.

                                                                                                                                                      5. It would depend on how interesting the topic was and how knowledgeable  the speaker was.

                                                                                                                                                      Oh..and BRING BACK THE OLD FORMAT!!!!!!!!!

                                                                                                                                                        Yawn
                                                                                                                                                        Participant

                                                                                                                                                          This.

                                                                                                                                                          Yawn
                                                                                                                                                          Participant

                                                                                                                                                            This.

                                                                                                                                                          MarieM
                                                                                                                                                          Participant

                                                                                                                                                            My two cents:

                                                                                                                                                            1. What woud make YOU go into the chat room?

                                                                                                                                                            Bring back the old format

                                                                                                                                                            2. Would you drop in the chat room if we had scheduled guests chattingh about various topics?

                                                                                                                                                            If the topic was interesting enough.

                                                                                                                                                            3. If so what would you want to chat about?

                                                                                                                                                            Treatments having success, new information on treatments, new stats, clinical trial information (it is what I always felt was the MOST important information here.)

                                                                                                                                                            4. Anyone with knowledge on the topic.

                                                                                                                                                            5. It would depend on how interesting the topic was and how knowledgeable  the speaker was.

                                                                                                                                                            Oh..and BRING BACK THE OLD FORMAT!!!!!!!!!

                                                                                                                                                            Bonnie Lea
                                                                                                                                                            Participant

                                                                                                                                                              mny two or three cents on Chat and stuff in general.  I have not been in chat very much in the past, as I just did not know too many of the people.  Some of course I knew and would join if I recognized a name.  had some lovely chats with Jerry and mostly just about things in general.  Dian also always is a patient lady… of course everyone here is great for that as well.

                                                                                                                                                              I don't go on the computer past 6:00 pm. here, as I am far too tired to do so, and prob wrapped up in TV or most likely just snoozing away. With time diff (like Nic from Oz)  though my time is EST so not near as bad as others in the world.  I miss the old board, in as much as it kept me feeling like I belonged and not just to a melanoma world.

                                                                                                                                                              Bonnie Lea
                                                                                                                                                              Participant

                                                                                                                                                                mny two or three cents on Chat and stuff in general.  I have not been in chat very much in the past, as I just did not know too many of the people.  Some of course I knew and would join if I recognized a name.  had some lovely chats with Jerry and mostly just about things in general.  Dian also always is a patient lady… of course everyone here is great for that as well.

                                                                                                                                                                I don't go on the computer past 6:00 pm. here, as I am far too tired to do so, and prob wrapped up in TV or most likely just snoozing away. With time diff (like Nic from Oz)  though my time is EST so not near as bad as others in the world.  I miss the old board, in as much as it kept me feeling like I belonged and not just to a melanoma world.

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                                                                                                                                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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