› Forums › General Melanoma Community › MRF Feedback Wanted: Preference for ASCO Update
- This topic has 48 replies, 9 voices, and was last updated 7 years, 11 months ago by
Anonymous.
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- May 20, 2016 at 6:05 pm
Dear MPIP Community:
Each year after the annual ASCO (American Society of Clinical Oncology) meeting, we have provided a post-ASCO update to our community. We have done this by teleconference, webinar and written report. Teleconferences seem to be less popular than they were in the past, and webinars, while a little more common, are generating a decent amount of excitement but are only being viewed for an average of 10 minutes (they're about 45 minutes long). A few years ago, Tim, our Executive Director, wrote up a very nice report (with the help of some amazing melanoma leaders) that received a lot of good feedback on MPIP, social media and on the educational pages of our website.
I'd love your feedback on which type of post-ASCO update you would prefer to have this year. We are anticipating another exciting and hopeful ASCO meeting (June 3-7) and look forward to providing you with a recap of the research findings that are presented and discussed. Thank you, in advance, for your opinions and preferences!
Sincerely,
Shelby – MRF
- Replies
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- May 21, 2016 at 12:49 am
You were not here then, so I will not hold it against you.
At the beginning, as Jeff Patterson made it it, MPIP was a very simple proposition.
A internet based central resource to share and exchange up to date information about melanoma from a central source between patients and caregivers in a simple way
It was by design simple then and it should be now.
No doubt you are smart Shelby, but do not make things stupid.
Granted, I am just coming off my drying out of IL2, but please consider the following.
Most cancer patients have between 15 to 30 minutes with a doctor.
Sadly, many at first instance have at the most 15.
So, consider your audience.
Surprising as it may seem to you, what I would be interested in more than the video stream or how it is delivered is what the MRF position is relative to the information presented.
Do you people not even think what it is like to be a patient?
Okay, I will be blunt.
I do not give a shit how the MRF is interested in their media presence.
I want to know what will help us, the people , off of our backs you thrive.
Charlie S
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- May 21, 2016 at 12:49 am
You were not here then, so I will not hold it against you.
At the beginning, as Jeff Patterson made it it, MPIP was a very simple proposition.
A internet based central resource to share and exchange up to date information about melanoma from a central source between patients and caregivers in a simple way
It was by design simple then and it should be now.
No doubt you are smart Shelby, but do not make things stupid.
Granted, I am just coming off my drying out of IL2, but please consider the following.
Most cancer patients have between 15 to 30 minutes with a doctor.
Sadly, many at first instance have at the most 15.
So, consider your audience.
Surprising as it may seem to you, what I would be interested in more than the video stream or how it is delivered is what the MRF position is relative to the information presented.
Do you people not even think what it is like to be a patient?
Okay, I will be blunt.
I do not give a shit how the MRF is interested in their media presence.
I want to know what will help us, the people , off of our backs you thrive.
Charlie S
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- May 21, 2016 at 12:49 am
You were not here then, so I will not hold it against you.
At the beginning, as Jeff Patterson made it it, MPIP was a very simple proposition.
A internet based central resource to share and exchange up to date information about melanoma from a central source between patients and caregivers in a simple way
It was by design simple then and it should be now.
No doubt you are smart Shelby, but do not make things stupid.
Granted, I am just coming off my drying out of IL2, but please consider the following.
Most cancer patients have between 15 to 30 minutes with a doctor.
Sadly, many at first instance have at the most 15.
So, consider your audience.
Surprising as it may seem to you, what I would be interested in more than the video stream or how it is delivered is what the MRF position is relative to the information presented.
Do you people not even think what it is like to be a patient?
Okay, I will be blunt.
I do not give a shit how the MRF is interested in their media presence.
I want to know what will help us, the people , off of our backs you thrive.
Charlie S
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- May 21, 2016 at 1:09 am
I too, prefer to read. However, links to the articles and webinars would be nice….so that folks know exactly where the intel is coming from should they wish to research it further. But most importantly, access to the slide presentations is essential! That is often the substance of the presentation…where the data is REALLY buried…but is often proprietary and hard for individuals to access. And perhaps what Charlie means…though I don't presume to speak for him…in part….is that MRF provide greater advocacy, explanation and comparison of data. I work hard to do this with my blog…but that's just me…alone…no team…no valid reason for access to interviews, phone calls, questions we, as patients, would very much like to pose to researchers and institutions. That level of inquiry, with your existing audience, staff, and avenue to reach out, would be nothing short of amazing. Thanks for all you do. Celeste
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- May 21, 2016 at 1:14 pm
I agree with Celeste and Charlie!!! Everything my husband and I have learned is from scholarly articles and the amazing people on this forum. Celeste is a gift to your forum and I honestly think she should be paid by your organization. She's an incredible wealth of information as are Brian P, Ed,and Klye Z. Of course the astonishing example of courage of many warriors like Charlie S, Josh F, Charles(Rita), Jake and D Feng are very inspiring too. Personally, if you didn't have this incredible forum we would not go on this website. MRF should be providing us with much more detailed information and a feeling that everyone's life matters.
Maureen
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- May 21, 2016 at 1:14 pm
I agree with Celeste and Charlie!!! Everything my husband and I have learned is from scholarly articles and the amazing people on this forum. Celeste is a gift to your forum and I honestly think she should be paid by your organization. She's an incredible wealth of information as are Brian P, Ed,and Klye Z. Of course the astonishing example of courage of many warriors like Charlie S, Josh F, Charles(Rita), Jake and D Feng are very inspiring too. Personally, if you didn't have this incredible forum we would not go on this website. MRF should be providing us with much more detailed information and a feeling that everyone's life matters.
Maureen
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- May 21, 2016 at 1:14 pm
I agree with Celeste and Charlie!!! Everything my husband and I have learned is from scholarly articles and the amazing people on this forum. Celeste is a gift to your forum and I honestly think she should be paid by your organization. She's an incredible wealth of information as are Brian P, Ed,and Klye Z. Of course the astonishing example of courage of many warriors like Charlie S, Josh F, Charles(Rita), Jake and D Feng are very inspiring too. Personally, if you didn't have this incredible forum we would not go on this website. MRF should be providing us with much more detailed information and a feeling that everyone's life matters.
Maureen
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- May 21, 2016 at 1:09 am
I too, prefer to read. However, links to the articles and webinars would be nice….so that folks know exactly where the intel is coming from should they wish to research it further. But most importantly, access to the slide presentations is essential! That is often the substance of the presentation…where the data is REALLY buried…but is often proprietary and hard for individuals to access. And perhaps what Charlie means…though I don't presume to speak for him…in part….is that MRF provide greater advocacy, explanation and comparison of data. I work hard to do this with my blog…but that's just me…alone…no team…no valid reason for access to interviews, phone calls, questions we, as patients, would very much like to pose to researchers and institutions. That level of inquiry, with your existing audience, staff, and avenue to reach out, would be nothing short of amazing. Thanks for all you do. Celeste
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- May 21, 2016 at 1:09 am
I too, prefer to read. However, links to the articles and webinars would be nice….so that folks know exactly where the intel is coming from should they wish to research it further. But most importantly, access to the slide presentations is essential! That is often the substance of the presentation…where the data is REALLY buried…but is often proprietary and hard for individuals to access. And perhaps what Charlie means…though I don't presume to speak for him…in part….is that MRF provide greater advocacy, explanation and comparison of data. I work hard to do this with my blog…but that's just me…alone…no team…no valid reason for access to interviews, phone calls, questions we, as patients, would very much like to pose to researchers and institutions. That level of inquiry, with your existing audience, staff, and avenue to reach out, would be nothing short of amazing. Thanks for all you do. Celeste
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- May 21, 2016 at 1:12 pm
How about putting Go pro cams on Dr. Weber, Dr.Hamid, Dr.Wolchok and Dr. Ribas. The footage sent live feed from the events so we can all sit back with some pop corn and here the most recent stats on all of our favorite topics in Melanoma. Shelby you can voice over at any time that things are getting exciting, kind of like how they do it at the Masters (play by play so to speak). Or, I guess a nice report from Tim would be ok!!!! Ed
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- May 21, 2016 at 1:12 pm
How about putting Go pro cams on Dr. Weber, Dr.Hamid, Dr.Wolchok and Dr. Ribas. The footage sent live feed from the events so we can all sit back with some pop corn and here the most recent stats on all of our favorite topics in Melanoma. Shelby you can voice over at any time that things are getting exciting, kind of like how they do it at the Masters (play by play so to speak). Or, I guess a nice report from Tim would be ok!!!! Ed
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- May 21, 2016 at 1:12 pm
How about putting Go pro cams on Dr. Weber, Dr.Hamid, Dr.Wolchok and Dr. Ribas. The footage sent live feed from the events so we can all sit back with some pop corn and here the most recent stats on all of our favorite topics in Melanoma. Shelby you can voice over at any time that things are getting exciting, kind of like how they do it at the Masters (play by play so to speak). Or, I guess a nice report from Tim would be ok!!!! Ed
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- May 21, 2016 at 6:14 pm
Maureen, you are much too kind…though I do appreciate it!! I truly believe it takes a village and we all have our parts. Lord, knows we wouldn't make it here without Janner, and her patience of Job!! I'm only trying to do my part to pay it forward…just a bit. However, I am in LOVE with the GoPro idea!!! I can see and hear it now ~ in sotto voce ~ "Yes, Weber rises. Is he going to make it? Indeed, he's stepping toward to podium…."
Hee hee!!! Yep, it takes a village….and a sense of humor! Thanks, Ed! c
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- May 21, 2016 at 6:14 pm
Maureen, you are much too kind…though I do appreciate it!! I truly believe it takes a village and we all have our parts. Lord, knows we wouldn't make it here without Janner, and her patience of Job!! I'm only trying to do my part to pay it forward…just a bit. However, I am in LOVE with the GoPro idea!!! I can see and hear it now ~ in sotto voce ~ "Yes, Weber rises. Is he going to make it? Indeed, he's stepping toward to podium…."
Hee hee!!! Yep, it takes a village….and a sense of humor! Thanks, Ed! c
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- May 21, 2016 at 6:14 pm
Maureen, you are much too kind…though I do appreciate it!! I truly believe it takes a village and we all have our parts. Lord, knows we wouldn't make it here without Janner, and her patience of Job!! I'm only trying to do my part to pay it forward…just a bit. However, I am in LOVE with the GoPro idea!!! I can see and hear it now ~ in sotto voce ~ "Yes, Weber rises. Is he going to make it? Indeed, he's stepping toward to podium…."
Hee hee!!! Yep, it takes a village….and a sense of humor! Thanks, Ed! c
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- May 21, 2016 at 6:40 pm
I have been thinking of a good opening scene, to get every ones attention. Shelby jumping out of an airplane and floating down to the convention center dressed ready for action is my best one so far!!! Tim on the other hand should be racing to the convention center on a jet ski and/ or motor cycle. That should have us all glued to the screen wanting more!!! Ed
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- May 21, 2016 at 6:40 pm
I have been thinking of a good opening scene, to get every ones attention. Shelby jumping out of an airplane and floating down to the convention center dressed ready for action is my best one so far!!! Tim on the other hand should be racing to the convention center on a jet ski and/ or motor cycle. That should have us all glued to the screen wanting more!!! Ed
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- May 21, 2016 at 6:40 pm
I have been thinking of a good opening scene, to get every ones attention. Shelby jumping out of an airplane and floating down to the convention center dressed ready for action is my best one so far!!! Tim on the other hand should be racing to the convention center on a jet ski and/ or motor cycle. That should have us all glued to the screen wanting more!!! Ed
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- May 21, 2016 at 11:39 pm
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 21, 2016 at 11:39 pm
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 21, 2016 at 11:39 pm
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 22, 2016 at 1:07 am
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 22, 2016 at 1:07 am
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 22, 2016 at 1:07 am
I agree with all the above especially Charlie. I've said in the past that Celeste's blog is most informative relevant tool we have for up to date info and data. The people on MPIP is what makes it great. So reading is great with relevant links for us to connect to.
Josh
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- May 22, 2016 at 2:00 am
Tim and Shelby,
There needs to be a radical change of this website. What is the purpose of the MRF? As a caregiver, I feel the occasional posts from the staff lack empathy and detailed information. If you or a loved one hasn't had this disease you haven't a clue the sheer desperation of scrambling to find the right treatment and options. It's like the MRF is on a different planet and the MPIP is the true nuts and bolts of the site. People truly care on the MPIP and there is much more excellent and up to date information on here. I disagree with Celeste. She should be a paid member of this site!!! She pours her heart and soul into every post and on top of that all of us learn so much more from her than this site as well as the other people I mentioned and of course Janner. If you want our trust, we need to feel that you are doing everything to get us the most current information. Try showing that every life on this site matters and that all of us are in a war with this dreaded disease and we have a chance to beat it.
Maureen
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- May 22, 2016 at 2:00 am
Tim and Shelby,
There needs to be a radical change of this website. What is the purpose of the MRF? As a caregiver, I feel the occasional posts from the staff lack empathy and detailed information. If you or a loved one hasn't had this disease you haven't a clue the sheer desperation of scrambling to find the right treatment and options. It's like the MRF is on a different planet and the MPIP is the true nuts and bolts of the site. People truly care on the MPIP and there is much more excellent and up to date information on here. I disagree with Celeste. She should be a paid member of this site!!! She pours her heart and soul into every post and on top of that all of us learn so much more from her than this site as well as the other people I mentioned and of course Janner. If you want our trust, we need to feel that you are doing everything to get us the most current information. Try showing that every life on this site matters and that all of us are in a war with this dreaded disease and we have a chance to beat it.
Maureen
-
- May 22, 2016 at 2:00 am
Tim and Shelby,
There needs to be a radical change of this website. What is the purpose of the MRF? As a caregiver, I feel the occasional posts from the staff lack empathy and detailed information. If you or a loved one hasn't had this disease you haven't a clue the sheer desperation of scrambling to find the right treatment and options. It's like the MRF is on a different planet and the MPIP is the true nuts and bolts of the site. People truly care on the MPIP and there is much more excellent and up to date information on here. I disagree with Celeste. She should be a paid member of this site!!! She pours her heart and soul into every post and on top of that all of us learn so much more from her than this site as well as the other people I mentioned and of course Janner. If you want our trust, we need to feel that you are doing everything to get us the most current information. Try showing that every life on this site matters and that all of us are in a war with this dreaded disease and we have a chance to beat it.
Maureen
-
- May 23, 2016 at 2:16 pm
Hi,
I can't help but read this and disagree somewhat. I am and will be forever grateful for this site, when I found it 3 years ago it was so comforting. I have made friends and learned so much, so that I could become my husbands "researcher" and advocate. This site would not run if not for wonderful people like Celeste, Janner and many others( like Artie). In an ideal world paying these people would be wonderful but lets face it melanoma is so misunderstood and really unless this awful cancer happens to you or a family member you have no idea its true dangers. When it comes to funding for melanoma I feel people don't focus on it like they do for breast cancer and other cancers. I put my heart and soul into caring for my husband Adam and since his passing AWARENESS has become not only my passion but my families passion as well. We recently held a walk in our very small community and raised 28,000$ and at the DC miles of melanoma event my brother in law gave this money to Tim and the MRF. why? for research!! When we began planning this walk my brother in law asked were I thought the money we would raise should go (MRF, our the hospital that Adam went to which is a research hospital), I wanted it all to go to MRF because research and awareness is so important with Melanoma. I don't want to see that money go to salaries really. I hope the money raised in Adams name helps another wife learn about melanoma, and maybe one day find the cure. There was also a board member at the walk in DC and he spoke about his sister in law that fought melanoma for 9 years leaving behind two teenage sons, I think there is a genuine caring and melanoma touched group of people behind the MRF. So I guess what I'm trying to say is THANK YOU to all the members of this forum. Thank you for all the volunteers that login and make this a valuable tool in living with and coping with melanoma.
Emily Turner
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- May 23, 2016 at 6:40 pm
Emily,
I'm very sorry about your husband, but I'm very glad you are still involved in raising money and awareness for the melanoma community. I'm a caregiver and I realize that I could be in your shoes one day too. I think the MPIP is a fantastic forum of very wonderful, caring and knowledgeable people!!! I just get very frustrated that I'm learning more from MPIP than MRF. There should be many more scholarly articles and more webinars from the top melanoma specialists. I have talked to Tim before and I know he's a very caring individual, but it's very scary when you are running out of options. This site could put up the cutting edge research that is being done. I don't expect any medical advice at all.
Maureen
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- May 23, 2016 at 6:40 pm
Emily,
I'm very sorry about your husband, but I'm very glad you are still involved in raising money and awareness for the melanoma community. I'm a caregiver and I realize that I could be in your shoes one day too. I think the MPIP is a fantastic forum of very wonderful, caring and knowledgeable people!!! I just get very frustrated that I'm learning more from MPIP than MRF. There should be many more scholarly articles and more webinars from the top melanoma specialists. I have talked to Tim before and I know he's a very caring individual, but it's very scary when you are running out of options. This site could put up the cutting edge research that is being done. I don't expect any medical advice at all.
Maureen
-
- May 23, 2016 at 6:40 pm
Emily,
I'm very sorry about your husband, but I'm very glad you are still involved in raising money and awareness for the melanoma community. I'm a caregiver and I realize that I could be in your shoes one day too. I think the MPIP is a fantastic forum of very wonderful, caring and knowledgeable people!!! I just get very frustrated that I'm learning more from MPIP than MRF. There should be many more scholarly articles and more webinars from the top melanoma specialists. I have talked to Tim before and I know he's a very caring individual, but it's very scary when you are running out of options. This site could put up the cutting edge research that is being done. I don't expect any medical advice at all.
Maureen
-
- May 23, 2016 at 2:16 pm
Hi,
I can't help but read this and disagree somewhat. I am and will be forever grateful for this site, when I found it 3 years ago it was so comforting. I have made friends and learned so much, so that I could become my husbands "researcher" and advocate. This site would not run if not for wonderful people like Celeste, Janner and many others( like Artie). In an ideal world paying these people would be wonderful but lets face it melanoma is so misunderstood and really unless this awful cancer happens to you or a family member you have no idea its true dangers. When it comes to funding for melanoma I feel people don't focus on it like they do for breast cancer and other cancers. I put my heart and soul into caring for my husband Adam and since his passing AWARENESS has become not only my passion but my families passion as well. We recently held a walk in our very small community and raised 28,000$ and at the DC miles of melanoma event my brother in law gave this money to Tim and the MRF. why? for research!! When we began planning this walk my brother in law asked were I thought the money we would raise should go (MRF, our the hospital that Adam went to which is a research hospital), I wanted it all to go to MRF because research and awareness is so important with Melanoma. I don't want to see that money go to salaries really. I hope the money raised in Adams name helps another wife learn about melanoma, and maybe one day find the cure. There was also a board member at the walk in DC and he spoke about his sister in law that fought melanoma for 9 years leaving behind two teenage sons, I think there is a genuine caring and melanoma touched group of people behind the MRF. So I guess what I'm trying to say is THANK YOU to all the members of this forum. Thank you for all the volunteers that login and make this a valuable tool in living with and coping with melanoma.
Emily Turner
-
- May 23, 2016 at 2:16 pm
Hi,
I can't help but read this and disagree somewhat. I am and will be forever grateful for this site, when I found it 3 years ago it was so comforting. I have made friends and learned so much, so that I could become my husbands "researcher" and advocate. This site would not run if not for wonderful people like Celeste, Janner and many others( like Artie). In an ideal world paying these people would be wonderful but lets face it melanoma is so misunderstood and really unless this awful cancer happens to you or a family member you have no idea its true dangers. When it comes to funding for melanoma I feel people don't focus on it like they do for breast cancer and other cancers. I put my heart and soul into caring for my husband Adam and since his passing AWARENESS has become not only my passion but my families passion as well. We recently held a walk in our very small community and raised 28,000$ and at the DC miles of melanoma event my brother in law gave this money to Tim and the MRF. why? for research!! When we began planning this walk my brother in law asked were I thought the money we would raise should go (MRF, our the hospital that Adam went to which is a research hospital), I wanted it all to go to MRF because research and awareness is so important with Melanoma. I don't want to see that money go to salaries really. I hope the money raised in Adams name helps another wife learn about melanoma, and maybe one day find the cure. There was also a board member at the walk in DC and he spoke about his sister in law that fought melanoma for 9 years leaving behind two teenage sons, I think there is a genuine caring and melanoma touched group of people behind the MRF. So I guess what I'm trying to say is THANK YOU to all the members of this forum. Thank you for all the volunteers that login and make this a valuable tool in living with and coping with melanoma.
Emily Turner
-
- May 22, 2016 at 5:35 am
The only reason I come in here is to get straight answers to the obstacles , and treatments available to me , and the others in here I care deeply about in fighting this disease . And I have always got the answers to the questions I have asked , which I am grateful for. But , it's only been the members ,i.e. the patients and caregivers that have responded. Honestly , the majority of the posts from the MRF team have little impact ,or information for me to apply to my situation in any kind of way. I met so many in here year's ago in chat ,and enjoyed that as much as the forum here,but chat hasn't worked for years which was a huge disappointment for me. And still is. I read so many posts about getting that straightened out,to no avail. Sigh.
So although I am very happy this forum still exists , I am ambivalent about how another meeting you all attend is presented . If you give me something I can chew on in the future , as all of the patient's , and caregivers do here, then I may get more excited about the delivery of a presentation .
Aloha ,
Bob
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- May 22, 2016 at 5:35 am
The only reason I come in here is to get straight answers to the obstacles , and treatments available to me , and the others in here I care deeply about in fighting this disease . And I have always got the answers to the questions I have asked , which I am grateful for. But , it's only been the members ,i.e. the patients and caregivers that have responded. Honestly , the majority of the posts from the MRF team have little impact ,or information for me to apply to my situation in any kind of way. I met so many in here year's ago in chat ,and enjoyed that as much as the forum here,but chat hasn't worked for years which was a huge disappointment for me. And still is. I read so many posts about getting that straightened out,to no avail. Sigh.
So although I am very happy this forum still exists , I am ambivalent about how another meeting you all attend is presented . If you give me something I can chew on in the future , as all of the patient's , and caregivers do here, then I may get more excited about the delivery of a presentation .
Aloha ,
Bob
-
- May 22, 2016 at 5:35 am
The only reason I come in here is to get straight answers to the obstacles , and treatments available to me , and the others in here I care deeply about in fighting this disease . And I have always got the answers to the questions I have asked , which I am grateful for. But , it's only been the members ,i.e. the patients and caregivers that have responded. Honestly , the majority of the posts from the MRF team have little impact ,or information for me to apply to my situation in any kind of way. I met so many in here year's ago in chat ,and enjoyed that as much as the forum here,but chat hasn't worked for years which was a huge disappointment for me. And still is. I read so many posts about getting that straightened out,to no avail. Sigh.
So although I am very happy this forum still exists , I am ambivalent about how another meeting you all attend is presented . If you give me something I can chew on in the future , as all of the patient's , and caregivers do here, then I may get more excited about the delivery of a presentation .
Aloha ,
Bob
-
- May 22, 2016 at 5:53 pm
I've been on this site for a couple of years now. Discovering it, and the incredible care, information and advice from other members has been a godsend. So much so, my derm always asks me, "what's new" in the melanoma world. I am no expert on what MRF is supposed to be providing here, and understand the above complaints. But that said, I have to wonder if it is very much by design, that advice and information be delivered sparingly. In a business world that is completely dominated by a CYA (cover your ass) disposition, perhaps MRF needs to move carefully so that information, is not confused with medical advice which is forbidden, even in this open forum. The original question was simply about preference of information format, and seems to wandered off the path here
Gary
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- May 22, 2016 at 5:53 pm
I've been on this site for a couple of years now. Discovering it, and the incredible care, information and advice from other members has been a godsend. So much so, my derm always asks me, "what's new" in the melanoma world. I am no expert on what MRF is supposed to be providing here, and understand the above complaints. But that said, I have to wonder if it is very much by design, that advice and information be delivered sparingly. In a business world that is completely dominated by a CYA (cover your ass) disposition, perhaps MRF needs to move carefully so that information, is not confused with medical advice which is forbidden, even in this open forum. The original question was simply about preference of information format, and seems to wandered off the path here
Gary
-
- May 22, 2016 at 5:53 pm
I've been on this site for a couple of years now. Discovering it, and the incredible care, information and advice from other members has been a godsend. So much so, my derm always asks me, "what's new" in the melanoma world. I am no expert on what MRF is supposed to be providing here, and understand the above complaints. But that said, I have to wonder if it is very much by design, that advice and information be delivered sparingly. In a business world that is completely dominated by a CYA (cover your ass) disposition, perhaps MRF needs to move carefully so that information, is not confused with medical advice which is forbidden, even in this open forum. The original question was simply about preference of information format, and seems to wandered off the path here
Gary
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