› Forums › General Melanoma Community › Message from the MRF
- This topic has 26 replies, 10 voices, and was last updated 13 years, 3 months ago by
MichaelFL.
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- August 15, 2011 at 8:31 pm
This message is in response to several questions, comments and concerns we have received over the last few days. There are varying opinions regarding the ability to post messages and comments using the Anonymous feature. After weighing the pros and cons again, this feature will remain in place. This feature gives old and new MPIP users the ability to ask questions they otherwise may be uncomfortable asking. Whether it is because of embarrassment, the desire to receive unbiased responses, or even the need (or want) to remain anonymous from children or other family mem
This message is in response to several questions, comments and concerns we have received over the last few days. There are varying opinions regarding the ability to post messages and comments using the Anonymous feature. After weighing the pros and cons again, this feature will remain in place. This feature gives old and new MPIP users the ability to ask questions they otherwise may be uncomfortable asking. Whether it is because of embarrassment, the desire to receive unbiased responses, or even the need (or want) to remain anonymous from children or other family members, it is important that this feature continue to be available.
The Anonymous feature is not intended to be used as a shield from others users when making rude or hurtful comments. The MRF has bulletin board policies and a code of conduct that all users agree to when registering on our site. The MRF also has the ability to see who posts what, even when something is posted anonymously. When the policies are broken, those individuals are contacted by us and appropriate action is taken. We do our best to monitor the bulletin board and remove inappropriate material and comments and the MPIP users have helped us with this task.
To assist us further, we have created a new email address that can now be used if you have direct issues regarding specific bulletin board posts or comments. You can still use the Contact Us form on the website, or you may send us an email at [email protected].
Please keep in mind that this board is full of strong opinions and different personalities. This increases the chances that someone will say something that you disagree with or that you are offended by. It is also important that you refrain from guessing who Anonymous posters are. Because of the high number of users, there is a good chance that the wrong person could be blamed. Thank you for your patience as we work to resolve this issue and, as always, we appreciate your comments and feedback.
Sincerely,
The MRF
- Replies
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- August 15, 2011 at 9:32 pm
Thank you, Shelby!
Grace and peace,
Carol
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- August 15, 2011 at 9:32 pm
Thank you, Shelby!
Grace and peace,
Carol
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- August 15, 2011 at 9:52 pm
Well said and may I point out that those who have posting names and profiles can also be ficticious. So everyone is anonymous in some shape or form on these boards. Try to stay focused on what is important and deflect your anger elsewhere.
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- August 17, 2011 at 6:50 pm
I fully understand why MRF states the reason for the use of the anonymous in posting on this forum, but how it has been used here in recent days concerning someone new coming here asking about interferon, (as well as many other times in the past), and especially in the case of EricNJill is in my opinion, uncalled for. This really speaks out towards the fact that something needs to be done on this forum.
Over the course of my being on this forum, I try my best to remain unbiased, and that is why I did not comment the first time the anon poster commented after seeing the You tube video with Eric‘s legs, while so many others did. But, when I saw what seemed like the same poster comment again, I decided to reiterate what had been said in the earlier posts responses, which basically was-just don’t read the post.
I am sure that MRF can come up with a better way to deal with the Anon posting issues that it does currently. As an example, If someone posts as anon, they should be required to go to a additional separate page stating the reason why they are posting as ANON, and if the post that is then listed on the forum is not in line with what is said on that initial page stating the reason why, or someone at MRF then finds it offensive, that poster should be removed from the forum. Or at the very least, warned once and then removed. Of course, I also understand that they will most likely just create another email, user id., etc.
Since the MRF is based in the USA, perhaps MRF should also investigate if someone’s rights are being violated on this forum as someone recently claimed. As far as I am aware, on a forum such as this there is no “Freedom of speech” as from my understanding, MRF a privately owned domain, and thus the staff have right to censor whatever they dislike. It also means that in a forum, the owners can decide which posts should not be approved, which ones should be deleted, and who should be banned.
As someone that grew up in another country, and had to come to America and learn English at a later date in life, I have take time to better understand these rights here in this country. Maybe MRF should take the time to invest in a Lawyer now, before they actually need one, and discuss this Freedom of speech issue mentioned on the board, before they are forced to do so.
In closing, I have been on this forum almost three years now, and this is not the first time this has happened. Just during the time I have been here, there have been in a wide range of anon issues ranging from attacks on someone because of their religious views, and personal attacks on people, including myself. Several posters have decided not to come here anymore because of an anon poster and their rude comments, and these were good supportive people that were liked, needed, and supportive here on the board. So MRF needs to ask itself, who does it need more? Anon posters that may offend many, causing some to leave, or everyone being upfront and honest on this board, thus keeping themselves better in check and hopefully making this board a safer place for everyone. Due to the very nature of people coming to this board, they have enough to deal with already, they do not need anonymous criticism as well.
As for me, I have decided to bow out gracefully from this forum. I shall consider returning once the Anonymous posting feature has been improved or removed.
Michael
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- August 17, 2011 at 6:50 pm
I fully understand why MRF states the reason for the use of the anonymous in posting on this forum, but how it has been used here in recent days concerning someone new coming here asking about interferon, (as well as many other times in the past), and especially in the case of EricNJill is in my opinion, uncalled for. This really speaks out towards the fact that something needs to be done on this forum.
Over the course of my being on this forum, I try my best to remain unbiased, and that is why I did not comment the first time the anon poster commented after seeing the You tube video with Eric‘s legs, while so many others did. But, when I saw what seemed like the same poster comment again, I decided to reiterate what had been said in the earlier posts responses, which basically was-just don’t read the post.
I am sure that MRF can come up with a better way to deal with the Anon posting issues that it does currently. As an example, If someone posts as anon, they should be required to go to a additional separate page stating the reason why they are posting as ANON, and if the post that is then listed on the forum is not in line with what is said on that initial page stating the reason why, or someone at MRF then finds it offensive, that poster should be removed from the forum. Or at the very least, warned once and then removed. Of course, I also understand that they will most likely just create another email, user id., etc.
Since the MRF is based in the USA, perhaps MRF should also investigate if someone’s rights are being violated on this forum as someone recently claimed. As far as I am aware, on a forum such as this there is no “Freedom of speech” as from my understanding, MRF a privately owned domain, and thus the staff have right to censor whatever they dislike. It also means that in a forum, the owners can decide which posts should not be approved, which ones should be deleted, and who should be banned.
As someone that grew up in another country, and had to come to America and learn English at a later date in life, I have take time to better understand these rights here in this country. Maybe MRF should take the time to invest in a Lawyer now, before they actually need one, and discuss this Freedom of speech issue mentioned on the board, before they are forced to do so.
In closing, I have been on this forum almost three years now, and this is not the first time this has happened. Just during the time I have been here, there have been in a wide range of anon issues ranging from attacks on someone because of their religious views, and personal attacks on people, including myself. Several posters have decided not to come here anymore because of an anon poster and their rude comments, and these were good supportive people that were liked, needed, and supportive here on the board. So MRF needs to ask itself, who does it need more? Anon posters that may offend many, causing some to leave, or everyone being upfront and honest on this board, thus keeping themselves better in check and hopefully making this board a safer place for everyone. Due to the very nature of people coming to this board, they have enough to deal with already, they do not need anonymous criticism as well.
As for me, I have decided to bow out gracefully from this forum. I shall consider returning once the Anonymous posting feature has been improved or removed.
Michael
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- August 18, 2011 at 2:18 am
Micheal,
Will I now have to send my son over to your house to ask you to research topics for me?
Take a break if you need it now. You've been very intense here and very valuable for your help to so many of all stages. In general, I don't like the posts being held for review by the STAFF before appearing on the boards. The one that I could see as possibility would be for the annons. Not wild about that, but might be a possibility for the MRF.
I don't know if they can monitor based on the IP addresses. If so that could be somethng to do after one warning about rudeness. I would expect this not to have to be used very often.
As you know I also had one problem with a few repeat annons, but felt that I had more info that would help many good people here. Your fabulous ability to research and remember what and where you found info is so useful.
Thank you for all the help you have given here.
With the address the Staff has given. Wew can immediately ntify them of ultra mean rudness that appears.
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- September 6, 2011 at 4:26 am
Sorry, I would have responded sooner but I have not been on the board since my last post, and I just happen to have this Labor Day week off, and I thought I would take a peek here. Actually, the wife and I both took it off. Time for some R and R.
Anyway, to answer your question, no Jerry, you do not have to send your son over as you have my phone number and email. Besides, there is nothing I could tell you that you do not already know being it about C-KIT or otherwise.
I know, you are just trying to throw in some humor. Stay off horses.
Michael
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- September 6, 2011 at 4:26 am
Sorry, I would have responded sooner but I have not been on the board since my last post, and I just happen to have this Labor Day week off, and I thought I would take a peek here. Actually, the wife and I both took it off. Time for some R and R.
Anyway, to answer your question, no Jerry, you do not have to send your son over as you have my phone number and email. Besides, there is nothing I could tell you that you do not already know being it about C-KIT or otherwise.
I know, you are just trying to throw in some humor. Stay off horses.
Michael
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- August 18, 2011 at 2:18 am
Micheal,
Will I now have to send my son over to your house to ask you to research topics for me?
Take a break if you need it now. You've been very intense here and very valuable for your help to so many of all stages. In general, I don't like the posts being held for review by the STAFF before appearing on the boards. The one that I could see as possibility would be for the annons. Not wild about that, but might be a possibility for the MRF.
I don't know if they can monitor based on the IP addresses. If so that could be somethng to do after one warning about rudeness. I would expect this not to have to be used very often.
As you know I also had one problem with a few repeat annons, but felt that I had more info that would help many good people here. Your fabulous ability to research and remember what and where you found info is so useful.
Thank you for all the help you have given here.
With the address the Staff has given. Wew can immediately ntify them of ultra mean rudness that appears.
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- August 18, 2011 at 9:37 pm
Michael,
The bottom line is, it is difficult, with our small staff, to see every rude, hurtful, mean etc. comment. That is why we have asked the active (and non-active) MPIP members to let us know (directly) if they see something that needs our attention. All of the MRF staff email addresses are on this website and can be used at any time.
I have said before, the MRF really wants it to be YOUR board and we want to interfere only when absolutely necessary. In this case, it was obviously necessary. So, we took appropriate action, contacted the individual making those Anon posts, warned the individual, and then removed that individual's account.
Our bulletin board policies and code of conduct were reviewed by our lawyer. Please also keep in mind that "offensive" language is quite often a matter of opinion. What the MRF may find offensive, the members of MPIP may not, and vice versa. Yes, some individuals need to be more sensitive when they are writing and resonding, but on the other hand, some individuals also need to have a little thicker skin and try not to take everything personally. With the high number of users here we are all bound to hear and see things we disagree with.
I agree with all of the other comments you received after writing this in that you will be greatly missed should you choose to leave the board. It is obvious that your input has been greatly valued here. Please feel free to contact me at any time should you need anything: [email protected]
Sincerely,
Shelby – MRF
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- August 18, 2011 at 9:37 pm
Michael,
The bottom line is, it is difficult, with our small staff, to see every rude, hurtful, mean etc. comment. That is why we have asked the active (and non-active) MPIP members to let us know (directly) if they see something that needs our attention. All of the MRF staff email addresses are on this website and can be used at any time.
I have said before, the MRF really wants it to be YOUR board and we want to interfere only when absolutely necessary. In this case, it was obviously necessary. So, we took appropriate action, contacted the individual making those Anon posts, warned the individual, and then removed that individual's account.
Our bulletin board policies and code of conduct were reviewed by our lawyer. Please also keep in mind that "offensive" language is quite often a matter of opinion. What the MRF may find offensive, the members of MPIP may not, and vice versa. Yes, some individuals need to be more sensitive when they are writing and resonding, but on the other hand, some individuals also need to have a little thicker skin and try not to take everything personally. With the high number of users here we are all bound to hear and see things we disagree with.
I agree with all of the other comments you received after writing this in that you will be greatly missed should you choose to leave the board. It is obvious that your input has been greatly valued here. Please feel free to contact me at any time should you need anything: [email protected]
Sincerely,
Shelby – MRF
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- August 20, 2011 at 5:34 pm
Michael,
I hope you are reading this. I tried to send you an email but your contact has been removed. Please, please contact me. My email address is [email protected]. They removed the person causing the issues. Please don't leave the board, you are too valuable here.
Also I wondered if you lived in FL. I am leaving for Marco Island, FL on Sunday to take some vacation time to get away. Maybe you are close and I could say hello.
Thank you for all you have done for Eric & I.
JillNEric in OH
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- September 6, 2011 at 4:32 am
Sorry Jill, I would have responded sooner but I have not been on the board since my last post, and I have this Labor Day week off, so I thought I would take a peek here, and I saw your post.
Yes, I do live in Florida, but I am about 200 miles from Marco Island.
At any rate, I hope you had a good vacation and took some time for yourself.
Michael
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- September 6, 2011 at 4:32 am
Sorry Jill, I would have responded sooner but I have not been on the board since my last post, and I have this Labor Day week off, so I thought I would take a peek here, and I saw your post.
Yes, I do live in Florida, but I am about 200 miles from Marco Island.
At any rate, I hope you had a good vacation and took some time for yourself.
Michael
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- August 20, 2011 at 5:34 pm
Michael,
I hope you are reading this. I tried to send you an email but your contact has been removed. Please, please contact me. My email address is [email protected]. They removed the person causing the issues. Please don't leave the board, you are too valuable here.
Also I wondered if you lived in FL. I am leaving for Marco Island, FL on Sunday to take some vacation time to get away. Maybe you are close and I could say hello.
Thank you for all you have done for Eric & I.
JillNEric in OH
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- August 18, 2011 at 3:41 pm
Michael,
I am fairly new to this forum. I have to say that leaving this forum is a mistake. You offer sound advice to people, and your knowledge of research on our illness is great. Leaving here would be a great loss.
Your information about interferon being more effective on ulcerated tumors was a factor in my decision to do interferon treatments.
You should not allow a misguided person's personal attacks force you to leave.
I look forward to reading yours posts in the future.
Thanks,
MikeWI
Stage 2c
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- August 18, 2011 at 3:41 pm
Michael,
I am fairly new to this forum. I have to say that leaving this forum is a mistake. You offer sound advice to people, and your knowledge of research on our illness is great. Leaving here would be a great loss.
Your information about interferon being more effective on ulcerated tumors was a factor in my decision to do interferon treatments.
You should not allow a misguided person's personal attacks force you to leave.
I look forward to reading yours posts in the future.
Thanks,
MikeWI
Stage 2c
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- August 18, 2011 at 7:18 pm
Dear MRF,
Maybe you could consider having an Anonymous BB for people that would like to post and ask questions anonymously, but stop allowing people to post on the main board unless they are registered.
Let people read the BB, but not post until they are registered and signed in. This might help.
JMHO,
Michele 🙂
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- August 18, 2011 at 7:18 pm
Dear MRF,
Maybe you could consider having an Anonymous BB for people that would like to post and ask questions anonymously, but stop allowing people to post on the main board unless they are registered.
Let people read the BB, but not post until they are registered and signed in. This might help.
JMHO,
Michele 🙂
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