MRF wants your opinion about Chat!

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

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

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

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

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

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

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.

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.

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.

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.

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.

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.

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!

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!

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!