The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

MRF wants your opinion about Chat!

Forums Caregiver Community MRF wants your opinion about Chat!

  • Post
    Anonymous
    Inactive

    Hello everyone,

    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?

    Hello everyone,

    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

    Loading spinner
Viewing 14 reply threads
  • Replies
      dian in spokane
      Participant

      well, I'm not sure that chat can be revived, but now that summer is over, ~I"LL~ give it a go..try to go in there more often.

      One big thing would be to get Jerry from Fauquier back in! I see this morning that he was in chat using his daughter tanya's nickname. Hopefully soon, he'll be able to replace his password and get back in there with his own name…which would cause a flock of people to run in there just to see him!

      Seriously..in the past, there was a solid group of people from here who would go in to ~socialize~ . That means..they were mostly talking about OTHER things besides melanoma. For some of us, it was just a place to escape melanoma. While I was on interferon, I went in there almost every night just to hang out and laugh..with people who understood how hard that was.

      We would all stop our giggling when someone came in with questions, or someone wanted to talk about melanoma, but a lot of the time there was NON melanoma talk going on.

      One of the great things about the chat room was that any newcomer to the board could get in there easily. So if you got a diagnosis of melanoma TODAY..and logged onto the web and went searching for info..one of the first sites google would offer you was the MPIP. Sometimes people even found the chat room before they found the bulletin board. But if you found the board first, you could see immediately that there were people in the chat room (or not)  and you could pop right in there and ask people questions.

      You can't do that anymore. This morning..there are something like..68 people reading the board, 58 of whom are not members..they are not logged in, and one can no longer enter the chat room unless one is logged in. So none of those browsers can get in there.

      There were some problems with the old chat room, sometimes we would get some malicious person in who would come in using some regular's nickname..impersonating that person..so the log is good at avoiding that. But it would be nice if non-members could get in. Maybe something could be worked out so that no one could use a registered user's nickname, but could still get in without registering themselves. Heck..I'd rather have the occasional troll than have it be off limits for the lurkers and browsers who might really need it.

      I don't know if that would help, because most people won't go in there unless they see others in there, and no one is in there anymore (for the most part)

      Another thing the old chat room had was a list of 'scheduled chat times' These were arbitrary. There were NO organized chats, BUT..when you would go to log into chat, you would see this list..something like: Monday: 10 am and 5 pm Tuesday noon and 6 pm..etc. Those of us who were there a lot tended to just ignore that, but newcomers would see that and actually come back at 6 pm! So just listing  chat times tended to help people show up.

      As to topic driven, scheduled chats..yes..that could work. I would say maybe once a month, and topics devoted to REAL HELP for melanoma patients! Things like…current treatments, navigating clinical trials, practical solutions to financial assistance, travel assistance. Caregvier burnout.. the topics are endless.

      One last thing…you might consider posting this query on the off topic board. There are people over there that rarely visit the main board. Sometimes, the main board just gets to be TOO MUCH for long term melanoma folks, and they have to take a break from it…but they stay connected via the otbb. And..it's the long term members that you need to reach to get chat going again.

      Shelby, I'm happy to see the MRF taking an interest in reviving this aspect of our community. The chat room is a sad shadow of it's former self.

      dian

      Loading spinner
        Becky
        Participant

        I don't post a lot but I come here every day to read the posts. What makes me go into the chat room is seeing that there are others there…usually it is empty so I don't bother. I dont like talking to myself :)

        I like the idea of a scheduled topic chat, but I would hate to see the chat room only used for that. I agree with Dian that it is a great way to escape the melanoma world by chatting about things other than that.

        Hopefully the chat room will revive (and yes hopefully Jerry will be back soon!) It helped me a lot when I first found this board last year.

        Becky

        Loading spinner
        Anonymous
        Inactive

        Thank you two for your responses.  We are really trying to just push patients into the chat room, not for our benefit, but for theirs.  Our hope is that by having regularly scheduled chats, members will go there on their own…and by all means, chat about whatever they want.  Our goal is simply to provide patients with the best possible online community and we feel that many patients will benefit from going into the chat room – that is, if people are there!  Thanks again!

        Loading spinner
        MarieM
        Participant

        Shelby,

        With all due respect, I don't think that you CAN KNOW what service that little chat room provided patients and their caregivers. Among all the fooling around and cocktail, makeup and tv talk…..there was much more than support and friendships made. People HELPED each other in a way that can't be found in the medical community. Researched for each other, picked each other up at airports and TOOK them to medical appointments, educated and….provided a SAFE PLACE for patients and caregivers to talk freely about their fears and frustrations. PEOPLE BONDED and no longer were so alone in their battle.  It WAS a unique place. UNLIKE any other cancer support site out there. WE DID TRY…MANY OF US…ME INCLUDED to tell the MRF. When the changes first started we (I INCLUDED…I would look up my repsonse and print it here..but who can find anything here???) STOP…ALL WRONG… I even said I would fire the people who dismantled the site and was going in the direction they were going.

        IF the MRF wants that unique site back to GIVE to the patients there is only one way. BRING IT BACK. Put a nice clear button  on your website that directs them THERE immediately. Simple really…….

        Marie

        Loading spinner
        lhaley
        Participant

        What Marie said is just soooo true! 

        Late one night while waiting for "another" surgery I saw 2 names on chat. I had never gone in before. It was Jerry and LynnT.  It seems it was Lynn's first chat also.  The first thing that happened was Lynn and I discovered that we lived only an hour from each other and went to the same Dr.  We met the next week. After that Lynn was always waiting for me when I came out of my scans. As she became sicker I would go to her house either before or after the scans.  Lynn passed away this past Saturday.  She didn't post often but that chance meeting was an immediate bond.  Jerry also kept up with Lynn and mentored her through her IL2 treatments. 

        Chat means more to many than just away to get information.

        Linda

        Loading spinner
        lhaley
        Participant

        What Marie said is just soooo true! 

        Late one night while waiting for "another" surgery I saw 2 names on chat. I had never gone in before. It was Jerry and LynnT.  It seems it was Lynn's first chat also.  The first thing that happened was Lynn and I discovered that we lived only an hour from each other and went to the same Dr.  We met the next week. After that Lynn was always waiting for me when I came out of my scans. As she became sicker I would go to her house either before or after the scans.  Lynn passed away this past Saturday.  She didn't post often but that chance meeting was an immediate bond.  Jerry also kept up with Lynn and mentored her through her IL2 treatments. 

        Chat means more to many than just away to get information.

        Linda

        Loading spinner
        MarieM
        Participant

        Shelby,

        With all due respect, I don't think that you CAN KNOW what service that little chat room provided patients and their caregivers. Among all the fooling around and cocktail, makeup and tv talk…..there was much more than support and friendships made. People HELPED each other in a way that can't be found in the medical community. Researched for each other, picked each other up at airports and TOOK them to medical appointments, educated and….provided a SAFE PLACE for patients and caregivers to talk freely about their fears and frustrations. PEOPLE BONDED and no longer were so alone in their battle.  It WAS a unique place. UNLIKE any other cancer support site out there. WE DID TRY…MANY OF US…ME INCLUDED to tell the MRF. When the changes first started we (I INCLUDED…I would look up my repsonse and print it here..but who can find anything here???) STOP…ALL WRONG… I even said I would fire the people who dismantled the site and was going in the direction they were going.

        IF the MRF wants that unique site back to GIVE to the patients there is only one way. BRING IT BACK. Put a nice clear button  on your website that directs them THERE immediately. Simple really…….

        Marie

        Loading spinner
        Anonymous
        Inactive

        Thank you two for your responses.  We are really trying to just push patients into the chat room, not for our benefit, but for theirs.  Our hope is that by having regularly scheduled chats, members will go there on their own…and by all means, chat about whatever they want.  Our goal is simply to provide patients with the best possible online community and we feel that many patients will benefit from going into the chat room – that is, if people are there!  Thanks again!

        Loading spinner
        Becky
        Participant

        I don't post a lot but I come here every day to read the posts. What makes me go into the chat room is seeing that there are others there…usually it is empty so I don't bother. I dont like talking to myself :)

        I like the idea of a scheduled topic chat, but I would hate to see the chat room only used for that. I agree with Dian that it is a great way to escape the melanoma world by chatting about things other than that.

        Hopefully the chat room will revive (and yes hopefully Jerry will be back soon!) It helped me a lot when I first found this board last year.

        Becky

        Loading spinner
        Jocelyn
        Participant

        Just wondering–are those 58 who are not logged in necessarily non-members? I log in but get kicked out after a while, and don't always log in again until I want to post. But I am still looking at the board every day, whether I am logged in or not. So when I am not logged in but here, what am I perceived as counting among–mbr or nonmbr?

        Loading spinner
        kwahlbin
        Guest

        If you are not logged in, you are counted as a non-member.  -Kathy

        Loading spinner
        kwahlbin
        Guest

        If you are not logged in, you are counted as a non-member.  -Kathy

        Loading spinner
        Jocelyn
        Participant

        Just wondering–are those 58 who are not logged in necessarily non-members? I log in but get kicked out after a while, and don't always log in again until I want to post. But I am still looking at the board every day, whether I am logged in or not. So when I am not logged in but here, what am I perceived as counting among–mbr or nonmbr?

        Loading spinner
      dian in spokane
      Participant

      well, I'm not sure that chat can be revived, but now that summer is over, ~I"LL~ give it a go..try to go in there more often.

      One big thing would be to get Jerry from Fauquier back in! I see this morning that he was in chat using his daughter tanya's nickname. Hopefully soon, he'll be able to replace his password and get back in there with his own name…which would cause a flock of people to run in there just to see him!

      Seriously..in the past, there was a solid group of people from here who would go in to ~socialize~ . That means..they were mostly talking about OTHER things besides melanoma. For some of us, it was just a place to escape melanoma. While I was on interferon, I went in there almost every night just to hang out and laugh..with people who understood how hard that was.

      We would all stop our giggling when someone came in with questions, or someone wanted to talk about melanoma, but a lot of the time there was NON melanoma talk going on.

      One of the great things about the chat room was that any newcomer to the board could get in there easily. So if you got a diagnosis of melanoma TODAY..and logged onto the web and went searching for info..one of the first sites google would offer you was the MPIP. Sometimes people even found the chat room before they found the bulletin board. But if you found the board first, you could see immediately that there were people in the chat room (or not)  and you could pop right in there and ask people questions.

      You can't do that anymore. This morning..there are something like..68 people reading the board, 58 of whom are not members..they are not logged in, and one can no longer enter the chat room unless one is logged in. So none of those browsers can get in there.

      There were some problems with the old chat room, sometimes we would get some malicious person in who would come in using some regular's nickname..impersonating that person..so the log is good at avoiding that. But it would be nice if non-members could get in. Maybe something could be worked out so that no one could use a registered user's nickname, but could still get in without registering themselves. Heck..I'd rather have the occasional troll than have it be off limits for the lurkers and browsers who might really need it.

      I don't know if that would help, because most people won't go in there unless they see others in there, and no one is in there anymore (for the most part)

      Another thing the old chat room had was a list of 'scheduled chat times' These were arbitrary. There were NO organized chats, BUT..when you would go to log into chat, you would see this list..something like: Monday: 10 am and 5 pm Tuesday noon and 6 pm..etc. Those of us who were there a lot tended to just ignore that, but newcomers would see that and actually come back at 6 pm! So just listing  chat times tended to help people show up.

      As to topic driven, scheduled chats..yes..that could work. I would say maybe once a month, and topics devoted to REAL HELP for melanoma patients! Things like…current treatments, navigating clinical trials, practical solutions to financial assistance, travel assistance. Caregvier burnout.. the topics are endless.

      One last thing…you might consider posting this query on the off topic board. There are people over there that rarely visit the main board. Sometimes, the main board just gets to be TOO MUCH for long term melanoma folks, and they have to take a break from it…but they stay connected via the otbb. And..it's the long term members that you need to reach to get chat going again.

      Shelby, I'm happy to see the MRF taking an interest in reviving this aspect of our community. The chat room is a sad shadow of it's former self.

      dian

      Loading spinner
      bill58
      Participant

      i cannot get into the chat room.  I logged in with my id and clicked on the chat.  Tried to open in a popup and directly, but I just get the connecting message.

      Are there some browser settings that need to be changed?

      Bill

      Loading spinner
      bill58
      Participant

      i cannot get into the chat room.  I logged in with my id and clicked on the chat.  Tried to open in a popup and directly, but I just get the connecting message.

      Are there some browser settings that need to be changed?

      Bill

      Loading spinner
      bill58
      Participant

      i cannot get into the chat room.  I logged in with my id and clicked on the chat.  Tried to open in a popup and directly, but I just get the connecting message.

      Are there some browser settings that need to be changed?

      Bill

      Loading spinner
        kwahlbin
        Guest

        Bill –  Do you know if you have popups disabled on your browser?  The only other thing I can think of is that you may not be able to run the flash application.  Chat uses flash to run.  Let me know if you would like me to help you with this further.  You can email me directly from my profile (just click on my userid).  -Kathy

        Loading spinner
        bill58
        Participant

        I could not get any email to open by clicking on your id.

        I tried with pop up blocker disabled, and still just had the connectiing icon display.

        Are there any flash downloads that are needed? 

        Bill

        Loading spinner
        kwahlbin
        Guest

        Hi Bill – sorry you are having problems.  The flash should automatically connect and there is nothing you need to download.  I will send you an email with my contact information.  – Kathy

        Loading spinner
        kwahlbin
        Guest

        Hi Bill – sorry you are having problems.  The flash should automatically connect and there is nothing you need to download.  I will send you an email with my contact information.  – Kathy

        Loading spinner
        bill58
        Participant

        I could not get any email to open by clicking on your id.

        I tried with pop up blocker disabled, and still just had the connectiing icon display.

        Are there any flash downloads that are needed? 

        Bill

        Loading spinner
        kwahlbin
        Guest

        Bill –  Do you know if you have popups disabled on your browser?  The only other thing I can think of is that you may not be able to run the flash application.  Chat uses flash to run.  Let me know if you would like me to help you with this further.  You can email me directly from my profile (just click on my userid).  -Kathy

        Loading spinner
      bill58
      Participant

      i cannot get into the chat room.  I logged in with my id and clicked on the chat.  Tried to open in a popup and directly, but I just get the connecting message.

      Are there some browser settings that need to be changed?

      Bill

      Loading spinner
      Charlie S
      Participant

      I have pasted your post and included some responses in bold behind your questions.

      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:  I would hope that the MRF is coming to grips with what they have done.  There is no reason to put a spin on things.  The BB content/participation and chat use is a shadow of what it was and it is a direct result of the changes the MRF made.  There is no other person or entity responsible but the MRF.  They broke that which needed no repairing, they caved to the pressure of a vocal few, ignored the comments of those outside of their chosen circle when attempting to restructure and remake a forum into a "community" of their own design.  The majority of the brain trust of patients and caregivers have been driven away due the unnecessary changes the MRF made to MPIP.  Otherwise, you wouldn't be reaching out.  Frankly, this "new" format is a failure.

      1.  What would make YOU go into the chat room?  After seeing first hand how the MRF interloped into the former MPIP, cleansed it and sanitized it to fit the wishes of a few and essentially destroyed its' essence, there really is not much to compel me to use chat anymore.  The tedious, long delayed, broken promise,laborious and incessant false promises for improvements to MPIP did nothing more than destroy it.  The registration process is tedious, often fails for no reason, the pop out version of chat seldom is reliable and the MRF has done nothing but set roadblocks to the true reason people can into chat when it was indeed vibrant over the years:  Patients came here for information and support for what is still essentially an orphan disease in the eyes of many.

      2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Oh, not for me, no I would not.  This idea of a moderated chat lacks the spontaniety of what actually brought people here in the first place.  I am sure many would like the idea of a host.

      3.  If so, what topics would you want to chat about?  See, this is what you and the MRF don't get and I honestly wonder if you ever will.  Melanoma is not a canned disease with straightforward answers, the elements of this disease and therefor the topics are endless, twisting, ever evolviing and dynamically diverse among the patient population and patients will not and should not be …..to quote you…. "be pushed or driven" anywhere. 

      4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Frankly, it's a shame that the Chairman of the Board of the MRF, Randy Lomax,himself a melanoma survivor, was either unable or unwilling to speak to the contributors of the MPIP during the excruciating transition.  He said nothing.  By contributors I mean the people who made MPIP what it was………..the patients and caregivers.  To me his behavior was and is aloof and shrouded in increasing layers of administration and unlike us patients in the trenches, seems to think himself above it all.

      5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.?? No one who reaches out here has a "scheduled" crisis when it comes to melanoma.  It is now and immediate.  Before, all one had to do was easily post a comment or quick zip into chat.  It is not that simple here anymore because of ineffective and obtuse registration requirements, not to mention a cluttered up web site that makes finding the BB or Chat difficult, 

      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,

      Lastly, and foremost, since you are speaking from a postion within the MRF, it is NOT "our" (as in the MRF) community, it is OURS…………the patients and the caregivers.  Just like Jeff and Lori Patterson first envisioned and implemented it.  Shame on the MRF for reversing all the goodwill they created and even more so, the lack of recognition. 

      Perhaps that may sound like a sense of entitlement on my part to you, but MPIP was a labor of love and we all responded, even when Jeff needed some cash to continue because the economic burdens became overwhelming, we all responded with the funds.

      MPIP was a life preserver for me when I first came here well over ten years ago and I always tried to give more than I took from here,  I do not believe at present that the MRF is willing to do the same.

      Charlie S

      1st diagnosed Stage III unknown Primary in 1987

      Stage IV in 1996 , still active disease and very much not dead, but deeply disappointed in the MRF.

      Loading spinner
        MarieM
        Participant

        WHAT HE SAID….

        Loading spinner
        MarieM
        Participant

        WHAT HE SAID….

        Loading spinner
        LizzM
        Participant

        AMEN! Charlie hit the nail on the head!

        Loading spinner
        LizzM
        Participant

        AMEN! Charlie hit the nail on the head!

        Loading spinner
        [email protected]
        Participant

         I want to start this post by saying I am a 10 year stage 3 survivor who found MPIP about 3 months after my dx. Just like many of you, MPIP was my lifeline during my year of Interferon. I have met and formed friendships with many from MPIP. I still visit the board multiple times daily and post if I feel I have something to offer. I know what MPIP was when the Pattersons were running it. Having said that, I am also the volunteer treasurer for MRF, a position I have held for 7 years. I become involved with MRF through a contact I met on MPIP.

        I certainly understand the frustrations of many with the amount of changes and length it has taken to implement them. I myself haven’t posted for a few weeks because the site wouldn’t accept my password and I didn’t have the time to figure out who to contact to get it to work. So even having a relationship with MRF, I still have issues. 

        The feel I get from the responses to Shelby’s question seems to be that MRF meant to cause the “problems” and people want things to go back to the way they were. If I remember correctly, the Pattersons came to MRF to ask if we would be interested in taking over MPIP because they could no longer handle the responsibility. Without MRF, MPIP could possibly be GONE completely! Is it better to have the bulletin board here as it is, with problems that can hopefully be resolved? Or not even have the board in existence where mm patients would have NO PLACE TO GO? There is a HUGE difference in running something with just two people or having an entire company involved. When Ben and Jerrys first started, I bet Ben and Jerry were in the back of the store making ice cream. Now that they are a huge company, I am quite certain things are not being done the same. Things have to change. Although there are many things MRF could and should have done differently and better, there are constraints when we are dealing with and relying on an outside company who handles website and design issues. Jeff had such a custom designed website, no one could duplicate his efforts to keep things the same. Unfortunately with no cure for the disease, MPIP continued to grow (and still does) to the point where even Jeff didn’t have the time to keep up with everything.  I would like to stress that MRF (given the restrictions of being a company, with paid employees, who work a regular 8 hour day, and NOT having an unlimited amount of MONEY to pay others to design the site to the expectations of those who feel entitled to have a great site like MRF) is trying to correct the issues that are out there.

        There were complaints before about inappropriate posts and people being able to do things anonymously.  To solve that issue, registration was implemented. You can’t get into chat without registration. Now that’s a hot point. It can’t be both ways! MRF is looking for ways to come up with a happy medium. Shelby was only hoping to get suggestions for ways to get people back into chat so perhaps it CAN get to the way it was before. If MRF doesn’t know what the TECHNCIAL issues are, those can’t be addressed. Those are the types of things we can hope to correct. Just saying "it’s not the same and we want it back to the way it was" doesn’t work better than a child throwing a trantrum when they don't get their way.

        I know many of you MANY times have given suggestions and input. To those, I would like to thank you. The MRF office has been in a state of transition for over a year. I’m not sure how many of you are aware that the MRF offices recently moved to Washington DC from New Jersey. With that move comes a whole new staff that may not be aware of the issues that possibly had been given to past employees. I would ask that people would please pass along specific outstanding issues they have with the new board. I am going to give out my email address for those of you who would like to send me issues directly

        [email protected]

        I know to many this will sound like a broken record that MRF asks for input but then nothing changes. I would like to think that with perhaps with the new chapter in the MRF book will come new and exciting changes that will help bring the bulletin board back to a happy place to be! I personally know the feeling of comfort you can get from talking to or getting ideas from others that are going through the same thing you are. Family and friends may be great but there are times only those experiencing the disease, truly know what you feel. I’m sure we all know what a unique creature MPIP was and there is nothing truly like it out there for other diseases. We can thank the Pattersons for that. Now let’s try to give MRF some guidance on what things you would like to see to keep that uniqueness! Keep in mind, not all things are possible. But it certainly never hurts to ask.

         Thanks! Take care!

         Cara

         [email protected]

        Loading spinner
        [email protected]
        Participant

         I want to start this post by saying I am a 10 year stage 3 survivor who found MPIP about 3 months after my dx. Just like many of you, MPIP was my lifeline during my year of Interferon. I have met and formed friendships with many from MPIP. I still visit the board multiple times daily and post if I feel I have something to offer. I know what MPIP was when the Pattersons were running it. Having said that, I am also the volunteer treasurer for MRF, a position I have held for 7 years. I become involved with MRF through a contact I met on MPIP.

        I certainly understand the frustrations of many with the amount of changes and length it has taken to implement them. I myself haven’t posted for a few weeks because the site wouldn’t accept my password and I didn’t have the time to figure out who to contact to get it to work. So even having a relationship with MRF, I still have issues. 

        The feel I get from the responses to Shelby’s question seems to be that MRF meant to cause the “problems” and people want things to go back to the way they were. If I remember correctly, the Pattersons came to MRF to ask if we would be interested in taking over MPIP because they could no longer handle the responsibility. Without MRF, MPIP could possibly be GONE completely! Is it better to have the bulletin board here as it is, with problems that can hopefully be resolved? Or not even have the board in existence where mm patients would have NO PLACE TO GO? There is a HUGE difference in running something with just two people or having an entire company involved. When Ben and Jerrys first started, I bet Ben and Jerry were in the back of the store making ice cream. Now that they are a huge company, I am quite certain things are not being done the same. Things have to change. Although there are many things MRF could and should have done differently and better, there are constraints when we are dealing with and relying on an outside company who handles website and design issues. Jeff had such a custom designed website, no one could duplicate his efforts to keep things the same. Unfortunately with no cure for the disease, MPIP continued to grow (and still does) to the point where even Jeff didn’t have the time to keep up with everything.  I would like to stress that MRF (given the restrictions of being a company, with paid employees, who work a regular 8 hour day, and NOT having an unlimited amount of MONEY to pay others to design the site to the expectations of those who feel entitled to have a great site like MRF) is trying to correct the issues that are out there.

        There were complaints before about inappropriate posts and people being able to do things anonymously.  To solve that issue, registration was implemented. You can’t get into chat without registration. Now that’s a hot point. It can’t be both ways! MRF is looking for ways to come up with a happy medium. Shelby was only hoping to get suggestions for ways to get people back into chat so perhaps it CAN get to the way it was before. If MRF doesn’t know what the TECHNCIAL issues are, those can’t be addressed. Those are the types of things we can hope to correct. Just saying "it’s not the same and we want it back to the way it was" doesn’t work better than a child throwing a trantrum when they don't get their way.

        I know many of you MANY times have given suggestions and input. To those, I would like to thank you. The MRF office has been in a state of transition for over a year. I’m not sure how many of you are aware that the MRF offices recently moved to Washington DC from New Jersey. With that move comes a whole new staff that may not be aware of the issues that possibly had been given to past employees. I would ask that people would please pass along specific outstanding issues they have with the new board. I am going to give out my email address for those of you who would like to send me issues directly

        [email protected]

        I know to many this will sound like a broken record that MRF asks for input but then nothing changes. I would like to think that with perhaps with the new chapter in the MRF book will come new and exciting changes that will help bring the bulletin board back to a happy place to be! I personally know the feeling of comfort you can get from talking to or getting ideas from others that are going through the same thing you are. Family and friends may be great but there are times only those experiencing the disease, truly know what you feel. I’m sure we all know what a unique creature MPIP was and there is nothing truly like it out there for other diseases. We can thank the Pattersons for that. Now let’s try to give MRF some guidance on what things you would like to see to keep that uniqueness! Keep in mind, not all things are possible. But it certainly never hurts to ask.

         Thanks! Take care!

         Cara

         [email protected]

        Loading spinner
      Charlie S
      Participant

      I have pasted your post and included some responses in bold behind your questions.

      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:  I would hope that the MRF is coming to grips with what they have done.  There is no reason to put a spin on things.  The BB content/participation and chat use is a shadow of what it was and it is a direct result of the changes the MRF made.  There is no other person or entity responsible but the MRF.  They broke that which needed no repairing, they caved to the pressure of a vocal few, ignored the comments of those outside of their chosen circle when attempting to restructure and remake a forum into a "community" of their own design.  The majority of the brain trust of patients and caregivers have been driven away due the unnecessary changes the MRF made to MPIP.  Otherwise, you wouldn't be reaching out.  Frankly, this "new" format is a failure.

      1.  What would make YOU go into the chat room?  After seeing first hand how the MRF interloped into the former MPIP, cleansed it and sanitized it to fit the wishes of a few and essentially destroyed its' essence, there really is not much to compel me to use chat anymore.  The tedious, long delayed, broken promise,laborious and incessant false promises for improvements to MPIP did nothing more than destroy it.  The registration process is tedious, often fails for no reason, the pop out version of chat seldom is reliable and the MRF has done nothing but set roadblocks to the true reason people can into chat when it was indeed vibrant over the years:  Patients came here for information and support for what is still essentially an orphan disease in the eyes of many.

      2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Oh, not for me, no I would not.  This idea of a moderated chat lacks the spontaniety of what actually brought people here in the first place.  I am sure many would like the idea of a host.

      3.  If so, what topics would you want to chat about?  See, this is what you and the MRF don't get and I honestly wonder if you ever will.  Melanoma is not a canned disease with straightforward answers, the elements of this disease and therefor the topics are endless, twisting, ever evolviing and dynamically diverse among the patient population and patients will not and should not be …..to quote you…. "be pushed or driven" anywhere. 

      4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Frankly, it's a shame that the Chairman of the Board of the MRF, Randy Lomax,himself a melanoma survivor, was either unable or unwilling to speak to the contributors of the MPIP during the excruciating transition.  He said nothing.  By contributors I mean the people who made MPIP what it was………..the patients and caregivers.  To me his behavior was and is aloof and shrouded in increasing layers of administration and unlike us patients in the trenches, seems to think himself above it all.

      5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.?? No one who reaches out here has a "scheduled" crisis when it comes to melanoma.  It is now and immediate.  Before, all one had to do was easily post a comment or quick zip into chat.  It is not that simple here anymore because of ineffective and obtuse registration requirements, not to mention a cluttered up web site that makes finding the BB or Chat difficult, 

      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,

      Lastly, and foremost, since you are speaking from a postion within the MRF, it is NOT "our" (as in the MRF) community, it is OURS…………the patients and the caregivers.  Just like Jeff and Lori Patterson first envisioned and implemented it.  Shame on the MRF for reversing all the goodwill they created and even more so, the lack of recognition. 

      Perhaps that may sound like a sense of entitlement on my part to you, but MPIP was a labor of love and we all responded, even when Jeff needed some cash to continue because the economic burdens became overwhelming, we all responded with the funds.

      MPIP was a life preserver for me when I first came here well over ten years ago and I always tried to give more than I took from here,  I do not believe at present that the MRF is willing to do the same.

      Charlie S

      1st diagnosed Stage III unknown Primary in 1987

      Stage IV in 1996 , still active disease and very much not dead, but deeply disappointed in the MRF.

      Loading spinner
      LBN
      Participant

      I am new to the website and was not aware of the chat room. While waiting for my last appt. another  patient told me about this website and the bulletin board. I would log into the chat room if I knew there was a scheduled topic to be discussed.

      Loading spinner
      LBN
      Participant

      I am new to the website and was not aware of the chat room. While waiting for my last appt. another  patient told me about this website and the bulletin board. I would log into the chat room if I knew there was a scheduled topic to be discussed.

      Loading spinner
      JoanR
      Participant

      I, too, have been on MPIP for 10 years. The chatline was a lifeline for me and I have spent hours talking to MarieM, PatM, Charlie, DonW ,Dian, Janner, etc. and consider them friends and confidants. We helped and supported each other through either fighting the disease ourselves or through the loss of a loved one. I have been met at airports, gone on trips with these wonderful people and like has been noted,  going to chat is an ordeal, and so very few people visit it anymore , I just don't bother. I even have to sign on to make comments on the bulletin board even tho' I hit the stay logged -in square. The bulletin board is cumbersome as it was so much easier when the comments were posted. I have patiently tried to follow and attempt to use the new system, but please read CHARLIE'S post and Marie's they are bang-on and echo my sentiments exactly.

      Loading spinner
        Bonnie Lea
        Participant

        I ditto  both marie M and Charlie S and Dian.  Before the chat room made me even laugh out loud here by myself.  they have the unique way to 'worming' out of me what was bothering me even though to a 'medical depth' it is def not as involved as some here are.  But those good kind FRIENDS were always there.

         

        I do not use chat now, though it took me ages to figure out how to get there.  (see melasuckanoma notation on me) hahha but once I found the way, I knew if I was in need, or just wanted to be with the ONLY friends and to some extent family members who actually KNEW and CARED how I was doing. 

        that in itself is enough to help a patient out along the way.

         

        Bonnie Lea Evans

        member since 2004

        Loading spinner
        Bonnie Lea
        Participant

        I ditto  both marie M and Charlie S and Dian.  Before the chat room made me even laugh out loud here by myself.  they have the unique way to 'worming' out of me what was bothering me even though to a 'medical depth' it is def not as involved as some here are.  But those good kind FRIENDS were always there.

         

        I do not use chat now, though it took me ages to figure out how to get there.  (see melasuckanoma notation on me) hahha but once I found the way, I knew if I was in need, or just wanted to be with the ONLY friends and to some extent family members who actually KNEW and CARED how I was doing. 

        that in itself is enough to help a patient out along the way.

         

        Bonnie Lea Evans

        member since 2004

        Loading spinner
      JoanR
      Participant

      I, too, have been on MPIP for 10 years. The chatline was a lifeline for me and I have spent hours talking to MarieM, PatM, Charlie, DonW ,Dian, Janner, etc. and consider them friends and confidants. We helped and supported each other through either fighting the disease ourselves or through the loss of a loved one. I have been met at airports, gone on trips with these wonderful people and like has been noted,  going to chat is an ordeal, and so very few people visit it anymore , I just don't bother. I even have to sign on to make comments on the bulletin board even tho' I hit the stay logged -in square. The bulletin board is cumbersome as it was so much easier when the comments were posted. I have patiently tried to follow and attempt to use the new system, but please read CHARLIE'S post and Marie's they are bang-on and echo my sentiments exactly.

      Loading spinner
      JerryfromFauq
      Participant

      Just found this line of posts, as I was unconcious for a few weeks when this was going around.  I have been trying to get into chat for over two hours tonight.  i remember often having 5-20 people at a time in the Jeff and Lori Patterson's MPIP chat room.  The Christian family that started the MPIP as a information and companionship forum for their family when Lori's sister came down with melanoma, well before the MRF was formed.  Jeff and Lori Patterson's contribution seem to have been well dropped and ignored with the lataest redo of the MRF history, which now uses Jeff Patterons date for the MPIP as the start of the MRF!

      Loading spinner
      JerryfromFauq
      Participant

      Just found this line of posts, as I was unconcious for a few weeks when this was going around.  I have been trying to get into chat for over two hours tonight.  i remember often having 5-20 people at a time in the Jeff and Lori Patterson's MPIP chat room.  The Christian family that started the MPIP as a information and companionship forum for their family when Lori's sister came down with melanoma, well before the MRF was formed.  Jeff and Lori Patterson's contribution seem to have been well dropped and ignored with the lataest redo of the MRF history, which now uses Jeff Patterons date for the MPIP as the start of the MRF!

      Loading spinner
        LaneyMcg
        Participant
        Hi jerry I too found mpip a few years ago and found it extremely helpful, welcoming and informative. I must say I find this new format a little confusing not nearly as easy to navigate. What did happen to the original mpip? I came back here a few weeks ago and was really saddened to see mpip gone.
        Hope you continue to do well
        Love across the pond.
        Laney x

        Loading spinner
        LaneyMcg
        Participant
        Hi jerry I too found mpip a few years ago and found it extremely helpful, welcoming and informative. I must say I find this new format a little confusing not nearly as easy to navigate. What did happen to the original mpip? I came back here a few weeks ago and was really saddened to see mpip gone.
        Hope you continue to do well
        Love across the pond.
        Laney x

        Loading spinner
        LaneyMcg
        Participant
        Hi jerry I too found mpip a few years ago and found it extremely helpful, welcoming and informative. I must say I find this new format a little confusing not nearly as easy to navigate. What did happen to the original mpip? I came back here a few weeks ago and was really saddened to see mpip gone.
        Hope you continue to do well
        Love across the pond.
        Laney x

        Loading spinner
      JerryfromFauq
      Participant

      Just found this line of posts, as I was unconcious for a few weeks when this was going around.  I have been trying to get into chat for over two hours tonight.  i remember often having 5-20 people at a time in the Jeff and Lori Patterson's MPIP chat room.  The Christian family that started the MPIP as a information and companionship forum for their family when Lori's sister came down with melanoma, well before the MRF was formed.  Jeff and Lori Patterson's contribution seem to have been well dropped and ignored with the lataest redo of the MRF history, which now uses Jeff Patterons date for the MPIP as the start of the MRF!

      Loading spinner
Viewing 14 reply threads

Tagged: 

  • You must be logged in to reply to this topic.
About the MRF Patient Forum

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.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.