Your Input Wanted – the MRF’s Website

At the risk of sounding snarky, consider this:  there are three critical elements to a web page: Development, Design and Implementation.  That's it..

What do we have? No chat. Consistent repeated posts and spam on the Off-Topic board due to the self described MRF "capacity" issues.

There is no need for me to waste 15 minutes of my time to participate in an observational survey because these three things remain unresolved. and can be fixed.

Fix Chat. Fix Repetetive Posts and implement network security. Takes five minutes to explain, maybe two hours for network deployment.

Fix chat?  Most high school kids know work-arounds for flash IRC and IRQ software why don't your IT people? Lifetime License Fee of 1,500 bucks max .

Fix repeat posts?  Server issue.  Try this:  post a reply, or make a "new topic" post and while waiting, open a new tab and navigate to this website…….your post will immediately appear in the new tab, while it is still spinning and not appearing in the first tab.  Why?  Because the upload cache(your reply) populates to the internet (new tab) faster than the refresh rate of the active window from where you posted; hence the poster clicks submit again and again; thus the duplicate posts.  Again this is 101 stuff; adjust download and upload cache on the server and pay attention to the active refresh rate.

Fix Spam?  Easy again.  When posting here. I get one of two things ……………..either a submit button and that is it, or sometimes I get a "captcha" box…………………..one of those weird letter thingies it asks me to type before my post will take effect.  Now, again, this is simple,; have one or the other, but not both because they WILL conflict with a user login.

All in all, the MRF does not need a new website, it simply needs to fix what is wrong with this one and learn how to supervise it, and that does not require an entire re-design or re-launch.   Although I bet your IT bunch is saying and selling that.

Reminds me a lot about Melanoma.

Management and working the problem rather than hand-wringing and a fools chase.

Cheers,

Charlie S

At the risk of sounding snarky, consider this:  there are three critical elements to a web page: Development, Design and Implementation.  That's it..

What do we have? No chat. Consistent repeated posts and spam on the Off-Topic board due to the self described MRF "capacity" issues.

There is no need for me to waste 15 minutes of my time to participate in an observational survey because these three things remain unresolved. and can be fixed.

Fix Chat. Fix Repetetive Posts and implement network security. Takes five minutes to explain, maybe two hours for network deployment.

Fix chat?  Most high school kids know work-arounds for flash IRC and IRQ software why don't your IT people? Lifetime License Fee of 1,500 bucks max .

Fix repeat posts?  Server issue.  Try this:  post a reply, or make a "new topic" post and while waiting, open a new tab and navigate to this website…….your post will immediately appear in the new tab, while it is still spinning and not appearing in the first tab.  Why?  Because the upload cache(your reply) populates to the internet (new tab) faster than the refresh rate of the active window from where you posted; hence the poster clicks submit again and again; thus the duplicate posts.  Again this is 101 stuff; adjust download and upload cache on the server and pay attention to the active refresh rate.

Fix Spam?  Easy again.  When posting here. I get one of two things ……………..either a submit button and that is it, or sometimes I get a "captcha" box…………………..one of those weird letter thingies it asks me to type before my post will take effect.  Now, again, this is simple,; have one or the other, but not both because they WILL conflict with a user login.

All in all, the MRF does not need a new website, it simply needs to fix what is wrong with this one and learn how to supervise it, and that does not require an entire re-design or re-launch.   Although I bet your IT bunch is saying and selling that.

Reminds me a lot about Melanoma.

Management and working the problem rather than hand-wringing and a fools chase.

Cheers,

Charlie S

At the risk of sounding snarky, consider this:  there are three critical elements to a web page: Development, Design and Implementation.  That's it..

What do we have? No chat. Consistent repeated posts and spam on the Off-Topic board due to the self described MRF "capacity" issues.

There is no need for me to waste 15 minutes of my time to participate in an observational survey because these three things remain unresolved. and can be fixed.

Fix Chat. Fix Repetetive Posts and implement network security. Takes five minutes to explain, maybe two hours for network deployment.

Fix chat?  Most high school kids know work-arounds for flash IRC and IRQ software why don't your IT people? Lifetime License Fee of 1,500 bucks max .

Fix repeat posts?  Server issue.  Try this:  post a reply, or make a "new topic" post and while waiting, open a new tab and navigate to this website…….your post will immediately appear in the new tab, while it is still spinning and not appearing in the first tab.  Why?  Because the upload cache(your reply) populates to the internet (new tab) faster than the refresh rate of the active window from where you posted; hence the poster clicks submit again and again; thus the duplicate posts.  Again this is 101 stuff; adjust download and upload cache on the server and pay attention to the active refresh rate.

Fix Spam?  Easy again.  When posting here. I get one of two things ……………..either a submit button and that is it, or sometimes I get a "captcha" box…………………..one of those weird letter thingies it asks me to type before my post will take effect.  Now, again, this is simple,; have one or the other, but not both because they WILL conflict with a user login.

All in all, the MRF does not need a new website, it simply needs to fix what is wrong with this one and learn how to supervise it, and that does not require an entire re-design or re-launch.   Although I bet your IT bunch is saying and selling that.

Reminds me a lot about Melanoma.

Management and working the problem rather than hand-wringing and a fools chase.

Cheers,

Charlie S

I  have a question.  Why are people allowed to post anonymously?  I've been a part of medical support forums before, and this is not the norm.  It makes it very difficult to find posts through a search, and it precludes checking in on the original poster.  Since you can post with a user name, why is the anonymous post option necessary?

I  have a question.  Why are people allowed to post anonymously?  I've been a part of medical support forums before, and this is not the norm.  It makes it very difficult to find posts through a search, and it precludes checking in on the original poster.  Since you can post with a user name, why is the anonymous post option necessary?

I  have a question.  Why are people allowed to post anonymously?  I've been a part of medical support forums before, and this is not the norm.  It makes it very difficult to find posts through a search, and it precludes checking in on the original poster.  Since you can post with a user name, why is the anonymous post option necessary?

I thought it was unfair of Charlie_S to criticize your survey without (apparently) having seen the survey. So I looked at your survey. Now it's fair of me to criticize it, so I will.

The first 2 pages of the survey are a MARKETING survey, not an MPIP survey. In order to access the survey itself I had to provide an email address. Why? So you can market to me? I doubt that very many people would try to "stuff the ballot box" by taking this survery numberous times. If they want to do that, they can just make up a bunch of fake email addresses and have at it.

The first page of the actual survey is a list of 7 marketing/demographic questions like "How old are you?" and "How did you learn about this survey?" (see below– my answer is "None of the above") Since the respondant is required to answer these questions before proceeding to page 2, I had to stop the survey there. I don't want to give you my demographic info.

As others have said, there are real problems with the functioning and administration of the forum. The web site itself is poorly designed– I tried to tell a newbie to go to the "Newly Diagnosed?" link and it took me 5 minutes to find it. That's why I usually refer people to the MIF web site for basic melanoma information. 

Give us a survey that addresses your site's UTILITY and doesn't require us to answer stupid marketing questions. 

7. How did you learn about this survey? *Please provide an answer to this question

I thought it was unfair of Charlie_S to criticize your survey without (apparently) having seen the survey. So I looked at your survey. Now it's fair of me to criticize it, so I will.

The first 2 pages of the survey are a MARKETING survey, not an MPIP survey. In order to access the survey itself I had to provide an email address. Why? So you can market to me? I doubt that very many people would try to "stuff the ballot box" by taking this survery numberous times. If they want to do that, they can just make up a bunch of fake email addresses and have at it.

The first page of the actual survey is a list of 7 marketing/demographic questions like "How old are you?" and "How did you learn about this survey?" (see below– my answer is "None of the above") Since the respondant is required to answer these questions before proceeding to page 2, I had to stop the survey there. I don't want to give you my demographic info.

As others have said, there are real problems with the functioning and administration of the forum. The web site itself is poorly designed– I tried to tell a newbie to go to the "Newly Diagnosed?" link and it took me 5 minutes to find it. That's why I usually refer people to the MIF web site for basic melanoma information. 

Give us a survey that addresses your site's UTILITY and doesn't require us to answer stupid marketing questions. 

7. How did you learn about this survey? *Please provide an answer to this question

I thought it was unfair of Charlie_S to criticize your survey without (apparently) having seen the survey. So I looked at your survey. Now it's fair of me to criticize it, so I will.

The first 2 pages of the survey are a MARKETING survey, not an MPIP survey. In order to access the survey itself I had to provide an email address. Why? So you can market to me? I doubt that very many people would try to "stuff the ballot box" by taking this survery numberous times. If they want to do that, they can just make up a bunch of fake email addresses and have at it.

The first page of the actual survey is a list of 7 marketing/demographic questions like "How old are you?" and "How did you learn about this survey?" (see below– my answer is "None of the above") Since the respondant is required to answer these questions before proceeding to page 2, I had to stop the survey there. I don't want to give you my demographic info.

As others have said, there are real problems with the functioning and administration of the forum. The web site itself is poorly designed– I tried to tell a newbie to go to the "Newly Diagnosed?" link and it took me 5 minutes to find it. That's why I usually refer people to the MIF web site for basic melanoma information. 

Give us a survey that addresses your site's UTILITY and doesn't require us to answer stupid marketing questions. 

7. How did you learn about this survey? *Please provide an answer to this question

casagrayson. I have participated on this forum since 1999 or 2000, I forget the exact time, Your question now is as relevant today as it was then presented.  There is  and historically  has been , a tension about anon posts here.

Disclaimer: I do not speak for,on or behalf of the MRF in any way, shape, fashion or form, and any opinions expressed by me are not endorsed nor related to the MRF.   I am sure (chuckle) the MRF would be happy to confirm that..

Here is my observation.  There have been husbands that post who have melanoma, there have been wives that post who have melanoma, there have been children that post who have melanoma and there have been each in this group that did not want the other or others to know they come or came here, because this is, in many ways a forum of last resort.

Conversely, there have been children, who have a parent that posts here, husbands that have a wife that post here, wives that have a husband that posts here and one thing is common………………..they are all scared and for whatever reason, are unable to share that with one another, but can come here with a bag over their head and share with us.

So, they end up here and want their name secret but not the circumstance.

There have been posters involved in litigation.  There have been lawyers, doctors, nurses, politicians and people from all walks of life here that, for whatever reason cannot or will not risk disclosure of their disease, nor identity  but are bleeding for the want of others who understand..

Sure, there will be, and always will be the jerk poster that just wants to annoy or even be hatefull; even those though, are usually just an outreach as they work through the trauma of a cancer diagnosis.

Until lately, Melanoma has been an orphan disease and "only skin cancer", and still suffers the stigma of not being a real cancer, so some people, having been beat up about that post as anon or are just so stuck in their tracks and frozen by fear, are unable to even admit it or accept that  themselves.

So they reach out in search of an identity, an ear and a voice…….because for many, all that has been taken away with a Melanoma diagnosis and we here, are the only ear left in the middle of their silent scream to seek a voice.

See, that is an unspoken thing about cancer; your identity is stolen; to others you are a cancer patient, but to you, you are still you.  If being anon here helps those people regain their identity, that work for me.

Charlie S

casagrayson. I have participated on this forum since 1999 or 2000, I forget the exact time, Your question now is as relevant today as it was then presented.  There is  and historically  has been , a tension about anon posts here.

Disclaimer: I do not speak for,on or behalf of the MRF in any way, shape, fashion or form, and any opinions expressed by me are not endorsed nor related to the MRF.   I am sure (chuckle) the MRF would be happy to confirm that..

Here is my observation.  There have been husbands that post who have melanoma, there have been wives that post who have melanoma, there have been children that post who have melanoma and there have been each in this group that did not want the other or others to know they come or came here, because this is, in many ways a forum of last resort.

Conversely, there have been children, who have a parent that posts here, husbands that have a wife that post here, wives that have a husband that posts here and one thing is common………………..they are all scared and for whatever reason, are unable to share that with one another, but can come here with a bag over their head and share with us.

So, they end up here and want their name secret but not the circumstance.

There have been posters involved in litigation.  There have been lawyers, doctors, nurses, politicians and people from all walks of life here that, for whatever reason cannot or will not risk disclosure of their disease, nor identity  but are bleeding for the want of others who understand..

Sure, there will be, and always will be the jerk poster that just wants to annoy or even be hatefull; even those though, are usually just an outreach as they work through the trauma of a cancer diagnosis.

Until lately, Melanoma has been an orphan disease and "only skin cancer", and still suffers the stigma of not being a real cancer, so some people, having been beat up about that post as anon or are just so stuck in their tracks and frozen by fear, are unable to even admit it or accept that  themselves.

So they reach out in search of an identity, an ear and a voice…….because for many, all that has been taken away with a Melanoma diagnosis and we here, are the only ear left in the middle of their silent scream to seek a voice.

See, that is an unspoken thing about cancer; your identity is stolen; to others you are a cancer patient, but to you, you are still you.  If being anon here helps those people regain their identity, that work for me.

Charlie S

casagrayson. I have participated on this forum since 1999 or 2000, I forget the exact time, Your question now is as relevant today as it was then presented.  There is  and historically  has been , a tension about anon posts here.

Disclaimer: I do not speak for,on or behalf of the MRF in any way, shape, fashion or form, and any opinions expressed by me are not endorsed nor related to the MRF.   I am sure (chuckle) the MRF would be happy to confirm that..

Here is my observation.  There have been husbands that post who have melanoma, there have been wives that post who have melanoma, there have been children that post who have melanoma and there have been each in this group that did not want the other or others to know they come or came here, because this is, in many ways a forum of last resort.

Conversely, there have been children, who have a parent that posts here, husbands that have a wife that post here, wives that have a husband that posts here and one thing is common………………..they are all scared and for whatever reason, are unable to share that with one another, but can come here with a bag over their head and share with us.

So, they end up here and want their name secret but not the circumstance.

There have been posters involved in litigation.  There have been lawyers, doctors, nurses, politicians and people from all walks of life here that, for whatever reason cannot or will not risk disclosure of their disease, nor identity  but are bleeding for the want of others who understand..

Sure, there will be, and always will be the jerk poster that just wants to annoy or even be hatefull; even those though, are usually just an outreach as they work through the trauma of a cancer diagnosis.

Until lately, Melanoma has been an orphan disease and "only skin cancer", and still suffers the stigma of not being a real cancer, so some people, having been beat up about that post as anon or are just so stuck in their tracks and frozen by fear, are unable to even admit it or accept that  themselves.

So they reach out in search of an identity, an ear and a voice…….because for many, all that has been taken away with a Melanoma diagnosis and we here, are the only ear left in the middle of their silent scream to seek a voice.

See, that is an unspoken thing about cancer; your identity is stolen; to others you are a cancer patient, but to you, you are still you.  If being anon here helps those people regain their identity, that work for me.

Charlie S

Thank you for taking the time to clarify matters, Shelby. This is your survey and you can set it up any way you like, of course. However, I think you would get a better response rate if you put the demographic questions last and make them optional, not required. There are a lot of people like me who don't like to provide demographic data to everyone and anyone and who especially resent "required" answers. Leave out the email address, too, or at least make that voluntary and place it at the end. (Read what you yourself wrote about privacy of postings.) In my opinion, the current structure of your survey places needless technical and psychological barriers in front of the fundamental information you are trying to collect via this survey. 

Thank you for taking the time to clarify matters, Shelby. This is your survey and you can set it up any way you like, of course. However, I think you would get a better response rate if you put the demographic questions last and make them optional, not required. There are a lot of people like me who don't like to provide demographic data to everyone and anyone and who especially resent "required" answers. Leave out the email address, too, or at least make that voluntary and place it at the end. (Read what you yourself wrote about privacy of postings.) In my opinion, the current structure of your survey places needless technical and psychological barriers in front of the fundamental information you are trying to collect via this survey. 

Thank you for taking the time to clarify matters, Shelby. This is your survey and you can set it up any way you like, of course. However, I think you would get a better response rate if you put the demographic questions last and make them optional, not required. There are a lot of people like me who don't like to provide demographic data to everyone and anyone and who especially resent "required" answers. Leave out the email address, too, or at least make that voluntary and place it at the end. (Read what you yourself wrote about privacy of postings.) In my opinion, the current structure of your survey places needless technical and psychological barriers in front of the fundamental information you are trying to collect via this survey. 

iI agree with everything Charlie said.  Shelby covered the one thing that he left out.  Most, if not all ladies that have had melanoma's   on their private areas have, after being here a while, started using their names.  Many would not have been here that long if not for the anon capability.  It must stay.

    I think Pow knows I respect her work here, but I do have one point that I will mentiion.  I too refer people to the MIF and haave much respect for Catherine.  I do like the MPIP layout because I think the MIF is too divided up.  One tends to follow a limited area there and not to get to know the wide range of melanoma patients that we see here and get to know.  i believe we learn more from the overall exposure on the MPIP.

I do not think Charlie was knocking the survey as much as he was hoping to get the items we have found bothersom corrected without throwing the baby out with the baath water and turning on the cold water of a restart again.  We have lost people from the jumping between programs before.

iI agree with everything Charlie said.  Shelby covered the one thing that he left out.  Most, if not all ladies that have had melanoma's   on their private areas have, after being here a while, started using their names.  Many would not have been here that long if not for the anon capability.  It must stay.

    I think Pow knows I respect her work here, but I do have one point that I will mentiion.  I too refer people to the MIF and haave much respect for Catherine.  I do like the MPIP layout because I think the MIF is too divided up.  One tends to follow a limited area there and not to get to know the wide range of melanoma patients that we see here and get to know.  i believe we learn more from the overall exposure on the MPIP.

I do not think Charlie was knocking the survey as much as he was hoping to get the items we have found bothersom corrected without throwing the baby out with the baath water and turning on the cold water of a restart again.  We have lost people from the jumping between programs before.

iI agree with everything Charlie said.  Shelby covered the one thing that he left out.  Most, if not all ladies that have had melanoma's   on their private areas have, after being here a while, started using their names.  Many would not have been here that long if not for the anon capability.  It must stay.

    I think Pow knows I respect her work here, but I do have one point that I will mentiion.  I too refer people to the MIF and haave much respect for Catherine.  I do like the MPIP layout because I think the MIF is too divided up.  One tends to follow a limited area there and not to get to know the wide range of melanoma patients that we see here and get to know.  i believe we learn more from the overall exposure on the MPIP.

I do not think Charlie was knocking the survey as much as he was hoping to get the items we have found bothersom corrected without throwing the baby out with the baath water and turning on the cold water of a restart again.  We have lost people from the jumping between programs before.