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- This topic has 78 replies, 15 voices, and was last updated 8 years, 8 months ago by
casagrayson.
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- August 11, 2015 at 11:41 am
MPIP–what a great resource for all of us. That said, I came to appreciate MIF's format (versus MPIP's) while attempting to "keep up" when I was hospitalized. While we're all in this together (kumbaya), how many of Janner's responses to Stage 0 patients can one Stage IV patient read? MIF's format segregates the posts into Stages I through IV, and there is even a dedicated section for Caregivers. MIF's format also resets the order of the posts based on the most recent response–another good idea. I hope that MRF will consider some of these changes for our mutual benefit. The concerns of a newly-diagnosed Stage 0 patient just don't line up with those of an experienced Stage IV patient–and they shouldn't be lumped together on the same page. Thanks.
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- August 11, 2015 at 6:09 pm
Hi Mat,
We appreciate your feedback on MPIP. We are actually disussing with our website team what modifications could and should be implemented to make it an even more user-friendly format, so we really welcome your thoughts and comments. Once we make some of the technical decisions, we will be able to announce a timeline and roll-out plan to users.
Also, I wanted to let you know, in case you weren't aware, that you do have the option on our forum to view the topics either by most recent topic OR by most recent reply. You can change your view by simply clicking on your preference. This can be found in the light blue box at the top of MPIP.
If you have any other questions or comments, please feel free to contact me directly at [email protected].
Sincerely,
Shelby – MRF
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- August 12, 2015 at 4:51 am
Shelby,
This may sound cheesy but one thing that might be nice is for members to have the ability to "like" a post. I really think that could be a pretty nice feature for the forum. Often members make comments, give advice, or make recommendations that are fantastic and it would be real nice to be able to like those post so that the originator of the thread can get a better feel for the replies they are receiving.
Brian
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- August 12, 2015 at 4:51 am
Shelby,
This may sound cheesy but one thing that might be nice is for members to have the ability to "like" a post. I really think that could be a pretty nice feature for the forum. Often members make comments, give advice, or make recommendations that are fantastic and it would be real nice to be able to like those post so that the originator of the thread can get a better feel for the replies they are receiving.
Brian
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- August 12, 2015 at 4:51 am
Shelby,
This may sound cheesy but one thing that might be nice is for members to have the ability to "like" a post. I really think that could be a pretty nice feature for the forum. Often members make comments, give advice, or make recommendations that are fantastic and it would be real nice to be able to like those post so that the originator of the thread can get a better feel for the replies they are receiving.
Brian
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- August 17, 2015 at 1:50 am
I used to hate anonymous posting and it can be misused but I changed my mind awhile back. Maybe the best way to deal with inappropriate responses posted anonymously is a 'report this post as inappropriate' button. There's still an account behind those posts, AFAIK one can't post even anonymously without an account. Could be used for the (rare these days) spam posts too.
There are scenarios that have been posted here in the past that IMO are very legitimate ones for posting, say, a question anonymously. Some questions, a few but real ones, might not get asked otherwise. The fact that we have screen names makes us less identifiable, but nonetheless to some extent identifiable. Otherwise we wouldn't be able to get to know each other a bit, including lots of unique and possibly identifying medical information/history about each other, and in some cases even actual self-identification.
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- August 17, 2015 at 1:50 am
I used to hate anonymous posting and it can be misused but I changed my mind awhile back. Maybe the best way to deal with inappropriate responses posted anonymously is a 'report this post as inappropriate' button. There's still an account behind those posts, AFAIK one can't post even anonymously without an account. Could be used for the (rare these days) spam posts too.
There are scenarios that have been posted here in the past that IMO are very legitimate ones for posting, say, a question anonymously. Some questions, a few but real ones, might not get asked otherwise. The fact that we have screen names makes us less identifiable, but nonetheless to some extent identifiable. Otherwise we wouldn't be able to get to know each other a bit, including lots of unique and possibly identifying medical information/history about each other, and in some cases even actual self-identification.
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- August 17, 2015 at 1:50 am
I used to hate anonymous posting and it can be misused but I changed my mind awhile back. Maybe the best way to deal with inappropriate responses posted anonymously is a 'report this post as inappropriate' button. There's still an account behind those posts, AFAIK one can't post even anonymously without an account. Could be used for the (rare these days) spam posts too.
There are scenarios that have been posted here in the past that IMO are very legitimate ones for posting, say, a question anonymously. Some questions, a few but real ones, might not get asked otherwise. The fact that we have screen names makes us less identifiable, but nonetheless to some extent identifiable. Otherwise we wouldn't be able to get to know each other a bit, including lots of unique and possibly identifying medical information/history about each other, and in some cases even actual self-identification.
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- August 11, 2015 at 6:09 pm
Hi Mat,
We appreciate your feedback on MPIP. We are actually disussing with our website team what modifications could and should be implemented to make it an even more user-friendly format, so we really welcome your thoughts and comments. Once we make some of the technical decisions, we will be able to announce a timeline and roll-out plan to users.
Also, I wanted to let you know, in case you weren't aware, that you do have the option on our forum to view the topics either by most recent topic OR by most recent reply. You can change your view by simply clicking on your preference. This can be found in the light blue box at the top of MPIP.
If you have any other questions or comments, please feel free to contact me directly at [email protected].
Sincerely,
Shelby – MRF
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- August 11, 2015 at 6:09 pm
Hi Mat,
We appreciate your feedback on MPIP. We are actually disussing with our website team what modifications could and should be implemented to make it an even more user-friendly format, so we really welcome your thoughts and comments. Once we make some of the technical decisions, we will be able to announce a timeline and roll-out plan to users.
Also, I wanted to let you know, in case you weren't aware, that you do have the option on our forum to view the topics either by most recent topic OR by most recent reply. You can change your view by simply clicking on your preference. This can be found in the light blue box at the top of MPIP.
If you have any other questions or comments, please feel free to contact me directly at [email protected].
Sincerely,
Shelby – MRF
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- August 11, 2015 at 7:07 pm
Mat, although I understand that you have no interest in reeding Janner's responses to Stage 0 patients, did it occur to you that the lower stage (e.g., Stages 0-2) may be inrested in responses to Stage 3 – 4 patients in order to be aware what to expect in case of recurrence?
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- August 11, 2015 at 7:14 pm
Interesting ideas Mat!!! I have one more suggestion for the team at MRF, please delete the anonymous feature.
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- August 11, 2015 at 7:14 pm
Interesting ideas Mat!!! I have one more suggestion for the team at MRF, please delete the anonymous feature.
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- August 11, 2015 at 8:13 pm
Great ideas Mat! I totally agree with you Ed on the anonymous posts. Please stop them!!! Stage 4 people need to have their own forum. If others want to read them, that's fine. We live a very different life and our concerns are much more urgent. Please give some thought on changing this format in that regard Shelby. Thanks though for what you do here. I very rarely go to MIF for information. I read this forum and MRA and of course scholarly publications.
maureen
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- August 11, 2015 at 8:13 pm
Great ideas Mat! I totally agree with you Ed on the anonymous posts. Please stop them!!! Stage 4 people need to have their own forum. If others want to read them, that's fine. We live a very different life and our concerns are much more urgent. Please give some thought on changing this format in that regard Shelby. Thanks though for what you do here. I very rarely go to MIF for information. I read this forum and MRA and of course scholarly publications.
maureen
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- August 11, 2015 at 8:13 pm
Great ideas Mat! I totally agree with you Ed on the anonymous posts. Please stop them!!! Stage 4 people need to have their own forum. If others want to read them, that's fine. We live a very different life and our concerns are much more urgent. Please give some thought on changing this format in that regard Shelby. Thanks though for what you do here. I very rarely go to MIF for information. I read this forum and MRA and of course scholarly publications.
maureen
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- August 17, 2015 at 3:48 pm
I hate the Anonymous posts. Why even require registration if you can post as anonymous? Many times I've read a post or a response, and I'd like to go back and find the post. Unfortunately, it is very difficult to search when you don't have a user name. Other times I would like to go back and find an update on someone simply because I cared … but I have no idea which "Anonymous" I was reading about.
People can choose any name they wish, so if they want to remain anonymous they only have to create a username that doesn't identify them.
Truly, the "anonymous" posting makes no sense.
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- August 17, 2015 at 3:48 pm
I hate the Anonymous posts. Why even require registration if you can post as anonymous? Many times I've read a post or a response, and I'd like to go back and find the post. Unfortunately, it is very difficult to search when you don't have a user name. Other times I would like to go back and find an update on someone simply because I cared … but I have no idea which "Anonymous" I was reading about.
People can choose any name they wish, so if they want to remain anonymous they only have to create a username that doesn't identify them.
Truly, the "anonymous" posting makes no sense.
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- August 17, 2015 at 3:48 pm
I hate the Anonymous posts. Why even require registration if you can post as anonymous? Many times I've read a post or a response, and I'd like to go back and find the post. Unfortunately, it is very difficult to search when you don't have a user name. Other times I would like to go back and find an update on someone simply because I cared … but I have no idea which "Anonymous" I was reading about.
People can choose any name they wish, so if they want to remain anonymous they only have to create a username that doesn't identify them.
Truly, the "anonymous" posting makes no sense.
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- August 11, 2015 at 7:14 pm
Interesting ideas Mat!!! I have one more suggestion for the team at MRF, please delete the anonymous feature.
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- August 11, 2015 at 7:07 pm
Mat, although I understand that you have no interest in reeding Janner's responses to Stage 0 patients, did it occur to you that the lower stage (e.g., Stages 0-2) may be inrested in responses to Stage 3 – 4 patients in order to be aware what to expect in case of recurrence?
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- August 11, 2015 at 7:07 pm
Mat, although I understand that you have no interest in reeding Janner's responses to Stage 0 patients, did it occur to you that the lower stage (e.g., Stages 0-2) may be inrested in responses to Stage 3 – 4 patients in order to be aware what to expect in case of recurrence?
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- August 11, 2015 at 8:57 pm
I don't mind the Anonymous posts either way, though it is nicer to get to know people by name. I would like to see the forum default to showing the posts with the most recent replies first. I also think it would be helpful for educational purposes, so that if someone wants to ask or contribute something related to a past thread they don't have to start a whole new one. I have often thought it would be nice to have a feature that shows number of views too. And I would love a feature that would allow you to go back in and edit a post! 🙂
One question I would have, though. Where would the mucosal melanoma folks post? Aside from ocular. We are a tiny subset of the melanoma population (1% of melanoma being mucosal) but a stage I-II vulvovaginal melanoma patient has more in common, prognosis, risk of recurrence, and followup wise, with an advanced stage II or stage III cutaneous patient. And I don't think there are enough of us to keep a separate subforum active.
It is not an issue with the forum the way it is now. But I can certainly understand Mat's concerns as a stage IV patient, too.
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- August 11, 2015 at 8:57 pm
I don't mind the Anonymous posts either way, though it is nicer to get to know people by name. I would like to see the forum default to showing the posts with the most recent replies first. I also think it would be helpful for educational purposes, so that if someone wants to ask or contribute something related to a past thread they don't have to start a whole new one. I have often thought it would be nice to have a feature that shows number of views too. And I would love a feature that would allow you to go back in and edit a post! 🙂
One question I would have, though. Where would the mucosal melanoma folks post? Aside from ocular. We are a tiny subset of the melanoma population (1% of melanoma being mucosal) but a stage I-II vulvovaginal melanoma patient has more in common, prognosis, risk of recurrence, and followup wise, with an advanced stage II or stage III cutaneous patient. And I don't think there are enough of us to keep a separate subforum active.
It is not an issue with the forum the way it is now. But I can certainly understand Mat's concerns as a stage IV patient, too.
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- August 11, 2015 at 8:57 pm
I don't mind the Anonymous posts either way, though it is nicer to get to know people by name. I would like to see the forum default to showing the posts with the most recent replies first. I also think it would be helpful for educational purposes, so that if someone wants to ask or contribute something related to a past thread they don't have to start a whole new one. I have often thought it would be nice to have a feature that shows number of views too. And I would love a feature that would allow you to go back in and edit a post! 🙂
One question I would have, though. Where would the mucosal melanoma folks post? Aside from ocular. We are a tiny subset of the melanoma population (1% of melanoma being mucosal) but a stage I-II vulvovaginal melanoma patient has more in common, prognosis, risk of recurrence, and followup wise, with an advanced stage II or stage III cutaneous patient. And I don't think there are enough of us to keep a separate subforum active.
It is not an issue with the forum the way it is now. But I can certainly understand Mat's concerns as a stage IV patient, too.
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- August 11, 2015 at 9:16 pm
Thanks for the (mostly) constructive responses. Shelby, thanks for the note on the order of postings. I'll look at that. Website work is expensive–but perhaps MRF could look at whether the users could have the option of retaining the existing default setting of "lumped together" versus moving to a new "Stage segregated" setting? (Probably too expensive.)
Separately, I have no issue with Anonymous posts. I generally ignore them. Also, while skipping over Stage 0-1 posts sounds perfectly logical (like walking and chewing gum at the same time)–not so easy when hospitalized and/or on heavy pain meds.
Finally, while Stage 0-1 patients are welcome to read any and all posts–if it were me, reading my posts would scare the crap out of me. (I went direct from Stage I to Stage IV in 10 years.) I'd take much more comfort in Janner's posts, which will be correct for 95% or so of patients–and quite wrong for the small remainder. (Sorry Janner, nothing personal.)
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- August 11, 2015 at 9:16 pm
Thanks for the (mostly) constructive responses. Shelby, thanks for the note on the order of postings. I'll look at that. Website work is expensive–but perhaps MRF could look at whether the users could have the option of retaining the existing default setting of "lumped together" versus moving to a new "Stage segregated" setting? (Probably too expensive.)
Separately, I have no issue with Anonymous posts. I generally ignore them. Also, while skipping over Stage 0-1 posts sounds perfectly logical (like walking and chewing gum at the same time)–not so easy when hospitalized and/or on heavy pain meds.
Finally, while Stage 0-1 patients are welcome to read any and all posts–if it were me, reading my posts would scare the crap out of me. (I went direct from Stage I to Stage IV in 10 years.) I'd take much more comfort in Janner's posts, which will be correct for 95% or so of patients–and quite wrong for the small remainder. (Sorry Janner, nothing personal.)
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- August 11, 2015 at 9:27 pm
Mat, great discussion. But I do think that so many people make up their names that posting as anonymous is the same as the others, actually more honest. And some folks worry about discrimination at work etc if it should get out about their disease. I find better up-to-date research on MIF and quick moderation and removal of spam.
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- August 11, 2015 at 9:27 pm
Mat, great discussion. But I do think that so many people make up their names that posting as anonymous is the same as the others, actually more honest. And some folks worry about discrimination at work etc if it should get out about their disease. I find better up-to-date research on MIF and quick moderation and removal of spam.
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- August 11, 2015 at 9:27 pm
Mat, great discussion. But I do think that so many people make up their names that posting as anonymous is the same as the others, actually more honest. And some folks worry about discrimination at work etc if it should get out about their disease. I find better up-to-date research on MIF and quick moderation and removal of spam.
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- August 11, 2015 at 9:16 pm
Thanks for the (mostly) constructive responses. Shelby, thanks for the note on the order of postings. I'll look at that. Website work is expensive–but perhaps MRF could look at whether the users could have the option of retaining the existing default setting of "lumped together" versus moving to a new "Stage segregated" setting? (Probably too expensive.)
Separately, I have no issue with Anonymous posts. I generally ignore them. Also, while skipping over Stage 0-1 posts sounds perfectly logical (like walking and chewing gum at the same time)–not so easy when hospitalized and/or on heavy pain meds.
Finally, while Stage 0-1 patients are welcome to read any and all posts–if it were me, reading my posts would scare the crap out of me. (I went direct from Stage I to Stage IV in 10 years.) I'd take much more comfort in Janner's posts, which will be correct for 95% or so of patients–and quite wrong for the small remainder. (Sorry Janner, nothing personal.)
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- August 12, 2015 at 4:19 pm
Mat, awhile back I made a bookmark by first clicked on the 'Topic Reply Date' to sort posts by the most recent replies, then bookmarked that page. Now my starting point is that bookmark, and it does pick up that sort-by-reply-date setting.
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- August 16, 2015 at 9:11 am
I like almost all the ideas for change. Primarily, because so much of what I am interested in is Stage IV focused. I am Stage IV. I also prefer MIF because I can easily determine what I have already read. I may want to read it again, and I easily can, but it does save me time and over taxation of my memory. It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me. I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.
Frank
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- August 16, 2015 at 9:11 am
I like almost all the ideas for change. Primarily, because so much of what I am interested in is Stage IV focused. I am Stage IV. I also prefer MIF because I can easily determine what I have already read. I may want to read it again, and I easily can, but it does save me time and over taxation of my memory. It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me. I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.
Frank
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- August 16, 2015 at 9:11 am
I like almost all the ideas for change. Primarily, because so much of what I am interested in is Stage IV focused. I am Stage IV. I also prefer MIF because I can easily determine what I have already read. I may want to read it again, and I easily can, but it does save me time and over taxation of my memory. It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me. I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.
Frank
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- August 16, 2015 at 1:53 pm
Great to hear that you are doing well Frank. I justed wanted to thank you and all Tiger fans for trading Price to the Blue Jays. Ed
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- August 16, 2015 at 1:53 pm
Great to hear that you are doing well Frank. I justed wanted to thank you and all Tiger fans for trading Price to the Blue Jays. Ed
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- August 16, 2015 at 1:53 pm
Great to hear that you are doing well Frank. I justed wanted to thank you and all Tiger fans for trading Price to the Blue Jays. Ed
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- August 17, 2015 at 7:24 am
After a few weeks on MPIP, I can see the wisdom in what Mat's suggesting – it allows stage IV people to focus on their 'journey' (gah I can't believe I used that word…), along with all the technicalities of treatment that they are dealing with. This really is a whole different world to, as Mat says, a newly diagnosed in situ patient. I guess as long as the separated threads aren't 'locked', stage 1ers with some kind of thirst for knowledge can read a stage IV board (but be mindful about posting in it) and vice versa. I just looked at MIF's format and can see the wisdom in separating out the threads. Whatever the case, I'm just very grateful to have the opportunity to share with you all. I have no real local support (well, unless I bore my family to death each night…) so really appreciate this service.
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- August 17, 2015 at 7:24 am
After a few weeks on MPIP, I can see the wisdom in what Mat's suggesting – it allows stage IV people to focus on their 'journey' (gah I can't believe I used that word…), along with all the technicalities of treatment that they are dealing with. This really is a whole different world to, as Mat says, a newly diagnosed in situ patient. I guess as long as the separated threads aren't 'locked', stage 1ers with some kind of thirst for knowledge can read a stage IV board (but be mindful about posting in it) and vice versa. I just looked at MIF's format and can see the wisdom in separating out the threads. Whatever the case, I'm just very grateful to have the opportunity to share with you all. I have no real local support (well, unless I bore my family to death each night…) so really appreciate this service.
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- August 17, 2015 at 7:24 am
After a few weeks on MPIP, I can see the wisdom in what Mat's suggesting – it allows stage IV people to focus on their 'journey' (gah I can't believe I used that word…), along with all the technicalities of treatment that they are dealing with. This really is a whole different world to, as Mat says, a newly diagnosed in situ patient. I guess as long as the separated threads aren't 'locked', stage 1ers with some kind of thirst for knowledge can read a stage IV board (but be mindful about posting in it) and vice versa. I just looked at MIF's format and can see the wisdom in separating out the threads. Whatever the case, I'm just very grateful to have the opportunity to share with you all. I have no real local support (well, unless I bore my family to death each night…) so really appreciate this service.
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- August 17, 2015 at 1:11 pm
Hi Stars, I follow a few amazing people in Australia on facebook. One guy that I would recommend you look up and follow is Jay Allen also known as " The Melanoma Man". He works for one of the gov't agencies promoting skin safety and raising awareness about Melanoma in Australia. He was the one who fought to get sunbed banded. I also follow "My mom has Melanoma" , she is the daughter of Jenny Thulborn who also writes about dealing with stage four Melanoma. I know Jay is always going to social events and get together, including walks to raise awareness and money. Family is great but they don't understand like someone who has Melanoma. Have a nice day!!!! Ed
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- August 17, 2015 at 1:11 pm
Hi Stars, I follow a few amazing people in Australia on facebook. One guy that I would recommend you look up and follow is Jay Allen also known as " The Melanoma Man". He works for one of the gov't agencies promoting skin safety and raising awareness about Melanoma in Australia. He was the one who fought to get sunbed banded. I also follow "My mom has Melanoma" , she is the daughter of Jenny Thulborn who also writes about dealing with stage four Melanoma. I know Jay is always going to social events and get together, including walks to raise awareness and money. Family is great but they don't understand like someone who has Melanoma. Have a nice day!!!! Ed
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- August 17, 2015 at 1:11 pm
Hi Stars, I follow a few amazing people in Australia on facebook. One guy that I would recommend you look up and follow is Jay Allen also known as " The Melanoma Man". He works for one of the gov't agencies promoting skin safety and raising awareness about Melanoma in Australia. He was the one who fought to get sunbed banded. I also follow "My mom has Melanoma" , she is the daughter of Jenny Thulborn who also writes about dealing with stage four Melanoma. I know Jay is always going to social events and get together, including walks to raise awareness and money. Family is great but they don't understand like someone who has Melanoma. Have a nice day!!!! Ed
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- August 21, 2015 at 5:12 pm
I've been a stage 4 patient for awhile — since before I joined MPIP. I like reading Janner's posts and otherse. I'm more knowledgeable on melanoma because of them. Likewise for the posts on stage 3 and beyond. *If* MPIP is a higher traffic site than MIF, I wonder if the combined forum is part of it. The stage 1 forum over there is pretty quiet. Dunno… call me a conservative.
There are earlier threads here about anonymous. One example was woman poster who was posting about a part of her body she didn't want to be asking about, other than anonymously. She did not want to be posting under her identity here. Regardless of our usernames being not precisely our real names. We still have identities here. There are other kinds of sensitive questions, e.g. about the workplace, benefits, etc. And others that can't be anticipated until the person posting finds themselves in that situation.
I do dislike when threads are full of anonymous postings, it does remove the entire context and continuity that comes from the identity of each person posting.
When someone posts about biochemo, HD IL-2 or interferon, for example, it's like 3…2…1… then the anonymous poster shows up says these are barbaric therapies, no doctor should ever prescribe them, don't do it. Why is that posted over and over by the same anonymous user? Who are they? The forum guidelines say to post/share from your own experience, and not to offer medical advice. That's a fine line to walk. But maybe that's part of why those particular anonymous posting seem jarring. Are they an expert? Have they ever had these treatments? For some people one of those treatments might (still) be a good choice. Which I know from being able to read the stage 3 postings.
I think a "report inappropriate posts" button might help with monitoring anonymous (to us but not necessarily to MPIP admins) as well as identified posts.
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- August 21, 2015 at 5:12 pm
I've been a stage 4 patient for awhile — since before I joined MPIP. I like reading Janner's posts and otherse. I'm more knowledgeable on melanoma because of them. Likewise for the posts on stage 3 and beyond. *If* MPIP is a higher traffic site than MIF, I wonder if the combined forum is part of it. The stage 1 forum over there is pretty quiet. Dunno… call me a conservative.
There are earlier threads here about anonymous. One example was woman poster who was posting about a part of her body she didn't want to be asking about, other than anonymously. She did not want to be posting under her identity here. Regardless of our usernames being not precisely our real names. We still have identities here. There are other kinds of sensitive questions, e.g. about the workplace, benefits, etc. And others that can't be anticipated until the person posting finds themselves in that situation.
I do dislike when threads are full of anonymous postings, it does remove the entire context and continuity that comes from the identity of each person posting.
When someone posts about biochemo, HD IL-2 or interferon, for example, it's like 3…2…1… then the anonymous poster shows up says these are barbaric therapies, no doctor should ever prescribe them, don't do it. Why is that posted over and over by the same anonymous user? Who are they? The forum guidelines say to post/share from your own experience, and not to offer medical advice. That's a fine line to walk. But maybe that's part of why those particular anonymous posting seem jarring. Are they an expert? Have they ever had these treatments? For some people one of those treatments might (still) be a good choice. Which I know from being able to read the stage 3 postings.
I think a "report inappropriate posts" button might help with monitoring anonymous (to us but not necessarily to MPIP admins) as well as identified posts.
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- August 21, 2015 at 5:12 pm
I've been a stage 4 patient for awhile — since before I joined MPIP. I like reading Janner's posts and otherse. I'm more knowledgeable on melanoma because of them. Likewise for the posts on stage 3 and beyond. *If* MPIP is a higher traffic site than MIF, I wonder if the combined forum is part of it. The stage 1 forum over there is pretty quiet. Dunno… call me a conservative.
There are earlier threads here about anonymous. One example was woman poster who was posting about a part of her body she didn't want to be asking about, other than anonymously. She did not want to be posting under her identity here. Regardless of our usernames being not precisely our real names. We still have identities here. There are other kinds of sensitive questions, e.g. about the workplace, benefits, etc. And others that can't be anticipated until the person posting finds themselves in that situation.
I do dislike when threads are full of anonymous postings, it does remove the entire context and continuity that comes from the identity of each person posting.
When someone posts about biochemo, HD IL-2 or interferon, for example, it's like 3…2…1… then the anonymous poster shows up says these are barbaric therapies, no doctor should ever prescribe them, don't do it. Why is that posted over and over by the same anonymous user? Who are they? The forum guidelines say to post/share from your own experience, and not to offer medical advice. That's a fine line to walk. But maybe that's part of why those particular anonymous posting seem jarring. Are they an expert? Have they ever had these treatments? For some people one of those treatments might (still) be a good choice. Which I know from being able to read the stage 3 postings.
I think a "report inappropriate posts" button might help with monitoring anonymous (to us but not necessarily to MPIP admins) as well as identified posts.
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- August 21, 2015 at 5:16 pm
And I think/agree the "Reply Post Date" should be the default sort order for posts. The board doesn't make sense to me sorted the way it is now by default. Which is why I've bookmarked MPIP sorted by reply date.
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- August 23, 2015 at 3:08 pm
Wanted to agree that I too enjoy Janner's posts and have learned a lot from them. I meant to say that in my original post. The other day she wrote something about lymph drainage that I had no idea about before I read it. I will often read the posts by early stagers, even though their situation is very different from my own, because some of them can be educational.
I also agree about MIF. I do find the subforums there to be tedious, and there are a lot of melanoma/skin cancer forums set up that way. I would not tend to go into an in situ or newly diagnosed or stage I-II subforum, but here I sometimes contribute to these threads because I happen to see them and know something about what is being asked. So I actually much prefer this forum for being able to quickly and easily scan over a large number of threads for the ones that interest me, whether a topic I relate to, or just including posts by someone whose opinion I respect or who I have gotten to know some from their posts and come to like, whether more or less advanced than me in stage.
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- August 23, 2015 at 3:08 pm
Wanted to agree that I too enjoy Janner's posts and have learned a lot from them. I meant to say that in my original post. The other day she wrote something about lymph drainage that I had no idea about before I read it. I will often read the posts by early stagers, even though their situation is very different from my own, because some of them can be educational.
I also agree about MIF. I do find the subforums there to be tedious, and there are a lot of melanoma/skin cancer forums set up that way. I would not tend to go into an in situ or newly diagnosed or stage I-II subforum, but here I sometimes contribute to these threads because I happen to see them and know something about what is being asked. So I actually much prefer this forum for being able to quickly and easily scan over a large number of threads for the ones that interest me, whether a topic I relate to, or just including posts by someone whose opinion I respect or who I have gotten to know some from their posts and come to like, whether more or less advanced than me in stage.
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- August 23, 2015 at 3:08 pm
Wanted to agree that I too enjoy Janner's posts and have learned a lot from them. I meant to say that in my original post. The other day she wrote something about lymph drainage that I had no idea about before I read it. I will often read the posts by early stagers, even though their situation is very different from my own, because some of them can be educational.
I also agree about MIF. I do find the subforums there to be tedious, and there are a lot of melanoma/skin cancer forums set up that way. I would not tend to go into an in situ or newly diagnosed or stage I-II subforum, but here I sometimes contribute to these threads because I happen to see them and know something about what is being asked. So I actually much prefer this forum for being able to quickly and easily scan over a large number of threads for the ones that interest me, whether a topic I relate to, or just including posts by someone whose opinion I respect or who I have gotten to know some from their posts and come to like, whether more or less advanced than me in stage.
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- August 30, 2015 at 7:23 pm
Once again, I am *begging* the "powers that be" to remove the ability to post as Anonymous. On a medical forum such as this, people's lives are on the line. And, once again, someone posted medical advice that was not only inaccurate and taken out of context, but could have negatively impacted the patient's well-being. It is pretty easy to throw out blanket statements without scientific support when you know you won't be held accountable for those statements.
Bad, bad policy for a forum dealing with life and death issues.
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- August 30, 2015 at 7:23 pm
Once again, I am *begging* the "powers that be" to remove the ability to post as Anonymous. On a medical forum such as this, people's lives are on the line. And, once again, someone posted medical advice that was not only inaccurate and taken out of context, but could have negatively impacted the patient's well-being. It is pretty easy to throw out blanket statements without scientific support when you know you won't be held accountable for those statements.
Bad, bad policy for a forum dealing with life and death issues.
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- August 30, 2015 at 7:23 pm
Once again, I am *begging* the "powers that be" to remove the ability to post as Anonymous. On a medical forum such as this, people's lives are on the line. And, once again, someone posted medical advice that was not only inaccurate and taken out of context, but could have negatively impacted the patient's well-being. It is pretty easy to throw out blanket statements without scientific support when you know you won't be held accountable for those statements.
Bad, bad policy for a forum dealing with life and death issues.
Tagged: caregiver
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