authenticity?

[Emily65Roses]

I don't agree at all. This isn't a communist government, thank you very much. And what about CF friends and spouses? They couldn't get a letter saying they had anything, but they have every right to be here. Period. End of story.

 

[miesl]

Oh yes, and how do you, in your obviously infinite knowledge, plan to *verify* those of us who are <b>or were</b> spouses of CF patients? Parents? Children? Boy/Girlfriends? Friends? Grandparents?

You need not thrust your trust issues on a message board that currently functions nicely after being here for 14 posts. How about you start your own little MSN club and invite who you want to talk to after you put them through your *screening* process?

 

[miesl]

Oh yes, and how do you, in your obviously infinite knowledge, plan to *verify* those of us who are <b>or were</b> spouses of CF patients? Parents? Children? Boy/Girlfriends? Friends? Grandparents?

You need not thrust your trust issues on a message board that currently functions nicely after being here for 14 posts. How about you start your own little MSN club and invite who you want to talk to after you put them through your *screening* process?

 

[miesl]

Oh yes, and how do you, in your obviously infinite knowledge, plan to *verify* those of us who are <b>or were</b> spouses of CF patients? Parents? Children? Boy/Girlfriends? Friends? Grandparents?

You need not thrust your trust issues on a message board that currently functions nicely after being here for 14 posts. How about you start your own little MSN club and invite who you want to talk to after you put them through your *screening* process?

 

[JazzysMom]

We have spoke of this Ellie. I completely understand where you are coming from. I just dont see it happening. Not on this site. Maybe on another one. Jeanne & Bill have their hands full with finding funding and expanding the forum. IN addition to this they run a business which takes care of other internet domains. You know how Jeanne feels about taking the good with the bad (so to speak) and I dont see how what you want can be obtained. I also worry that we would lose a lot of good people with valuable info & experinces. I think this could be a potential problem for a few reasons. THey dont want the hassle of going thru all the effort, they get grief from their physician if its revealed why the letter is needed or other reasons.. There is one CF forum that I never joined because to become a member was quite lengthy. I honestly dont think (even knowing bad things that have happened) that is needed. This is something that you are passionate about I realize. I do believe this is something we will have to agree to disagree on!

 

[JazzysMom]

We have spoke of this Ellie. I completely understand where you are coming from. I just dont see it happening. Not on this site. Maybe on another one. Jeanne & Bill have their hands full with finding funding and expanding the forum. IN addition to this they run a business which takes care of other internet domains. You know how Jeanne feels about taking the good with the bad (so to speak) and I dont see how what you want can be obtained. I also worry that we would lose a lot of good people with valuable info & experinces. I think this could be a potential problem for a few reasons. THey dont want the hassle of going thru all the effort, they get grief from their physician if its revealed why the letter is needed or other reasons.. There is one CF forum that I never joined because to become a member was quite lengthy. I honestly dont think (even knowing bad things that have happened) that is needed. This is something that you are passionate about I realize. I do believe this is something we will have to agree to disagree on!

 

[JazzysMom]

We have spoke of this Ellie. I completely understand where you are coming from. I just dont see it happening. Not on this site. Maybe on another one. Jeanne & Bill have their hands full with finding funding and expanding the forum. IN addition to this they run a business which takes care of other internet domains. You know how Jeanne feels about taking the good with the bad (so to speak) and I dont see how what you want can be obtained. I also worry that we would lose a lot of good people with valuable info & experinces. I think this could be a potential problem for a few reasons. THey dont want the hassle of going thru all the effort, they get grief from their physician if its revealed why the letter is needed or other reasons.. There is one CF forum that I never joined because to become a member was quite lengthy. I honestly dont think (even knowing bad things that have happened) that is needed. This is something that you are passionate about I realize. I do believe this is something we will have to agree to disagree on!

 

[JazzysMom]

OK I just heard from Ellie and she thinks I need to state what I feel a bit more clear. The ?? of peoples identity has come up. It has been a concern for some of us and we find it extremely odd when things are said, but not confirmed. We have evidence that #'s given lead to an unknown person. We have returned mail from addresses for people. IF anyone is a fraud it seems that it could hurt members here. Yes it is the world wide web and yes we should enter the internet being aware that we (as a rule) cant confirm ones story or identity. However; the concern for fellow CFers is that some people just cant seperate virtual life from real life. Because of this it becomes scary when encountering harsh stories like what some of our widows like Allie talk of. Should we have to sugar coat things? That is another story which has been hashed over and over again. I dont see having such a strict registration process is completely helpful. ALL things considered I think things work well here. There will be some things that dont turn out well or some people that leave sadly, but for the most part, I think we have a nice balance......frauds? Maybe or maybe not. I cant confirm one way or the other. I will just say....some things are odd!

 

[JazzysMom]

OK I just heard from Ellie and she thinks I need to state what I feel a bit more clear. The ?? of peoples identity has come up. It has been a concern for some of us and we find it extremely odd when things are said, but not confirmed. We have evidence that #'s given lead to an unknown person. We have returned mail from addresses for people. IF anyone is a fraud it seems that it could hurt members here. Yes it is the world wide web and yes we should enter the internet being aware that we (as a rule) cant confirm ones story or identity. However; the concern for fellow CFers is that some people just cant seperate virtual life from real life. Because of this it becomes scary when encountering harsh stories like what some of our widows like Allie talk of. Should we have to sugar coat things? That is another story which has been hashed over and over again. I dont see having such a strict registration process is completely helpful. ALL things considered I think things work well here. There will be some things that dont turn out well or some people that leave sadly, but for the most part, I think we have a nice balance......frauds? Maybe or maybe not. I cant confirm one way or the other. I will just say....some things are odd!

 

[JazzysMom]

OK I just heard from Ellie and she thinks I need to state what I feel a bit more clear. The ?? of peoples identity has come up. It has been a concern for some of us and we find it extremely odd when things are said, but not confirmed. We have evidence that #'s given lead to an unknown person. We have returned mail from addresses for people. IF anyone is a fraud it seems that it could hurt members here. Yes it is the world wide web and yes we should enter the internet being aware that we (as a rule) cant confirm ones story or identity. However; the concern for fellow CFers is that some people just cant seperate virtual life from real life. Because of this it becomes scary when encountering harsh stories like what some of our widows like Allie talk of. Should we have to sugar coat things? That is another story which has been hashed over and over again. I dont see having such a strict registration process is completely helpful. ALL things considered I think things work well here. There will be some things that dont turn out well or some people that leave sadly, but for the most part, I think we have a nice balance......frauds? Maybe or maybe not. I cant confirm one way or the other. I will just say....some things are odd!

 

[NoExcuses]

I don't like the idea. This forum is open and that's what makes it great.

If you want a forum that's closed to just people who have their ID's verified, you should start one.

Otherwise, we're doing just fine here by my measure.

 

[NoExcuses]

I don't like the idea. This forum is open and that's what makes it great.

If you want a forum that's closed to just people who have their ID's verified, you should start one.

Otherwise, we're doing just fine here by my measure.

 

[NoExcuses]

I don't like the idea. This forum is open and that's what makes it great.

If you want a forum that's closed to just people who have their ID's verified, you should start one.

Otherwise, we're doing just fine here by my measure.

 

[julie]

I say that if this is what you want, start your own website with this criteria and spend all your time verifying the information. You want it... create it.

I personally think that there is a major control issue here and also a major self control issue. Additionally, your lack of trust, whatever it may be, should not be projected onto any of us here.
People lie all the time, there is really nothing you can do about it.

You have no business attacking (either on or off this board) members who come here for support. They may no longer have someone with CF in their lives, but at one time, they did, and they deserve the support just as much as anyone else. I'd even venture to say that they have more of a place here than you do.

If you don't believe someone, just avoid them.

 

[julie]

I say that if this is what you want, start your own website with this criteria and spend all your time verifying the information. You want it... create it.

I personally think that there is a major control issue here and also a major self control issue. Additionally, your lack of trust, whatever it may be, should not be projected onto any of us here.
People lie all the time, there is really nothing you can do about it.

You have no business attacking (either on or off this board) members who come here for support. They may no longer have someone with CF in their lives, but at one time, they did, and they deserve the support just as much as anyone else. I'd even venture to say that they have more of a place here than you do.

If you don't believe someone, just avoid them.

 

[julie]

I say that if this is what you want, start your own website with this criteria and spend all your time verifying the information. You want it... create it.

I personally think that there is a major control issue here and also a major self control issue. Additionally, your lack of trust, whatever it may be, should not be projected onto any of us here.
People lie all the time, there is really nothing you can do about it.

You have no business attacking (either on or off this board) members who come here for support. They may no longer have someone with CF in their lives, but at one time, they did, and they deserve the support just as much as anyone else. I'd even venture to say that they have more of a place here than you do.

If you don't believe someone, just avoid them.

 

[lightNlife]

I very much disagree. The added safety of anonymity that is afforded by this site is one of the reasons I am here. I feel very uncomfortable when people attempt to pry into things that I'm not willing to share. For example, topics like "which center do you go to" or "please post pics" and so forth are just a few that make me want to pull back. I choose not to respond to them because I have the right to be discrete about my life and CF.

I have an inkling as to whose "authenticity" is being called into question. Please don't jab at anyone's scars--they may not be healed yet.

I don't particularly think that knowing everyone's background or life experience credentials or any such thing should have any bearing on how people interact on this forum. Each of us has something to contribute in one form or another to the forum. We meet each other where we are.

I think of it as a big "come as you are" party. Some of us are all put together, hair perfectly coiffed and ready to take on the world. Others of us barefoot and disheveled with eye-crusties and streaked mascara from an exhausting night. No matter who posts to the forum, pretty much anything CF related (past hurts, current successes, and future hopes) can be posted here, and that's what makes it such a beneficial community.

 

[lightNlife]

I very much disagree. The added safety of anonymity that is afforded by this site is one of the reasons I am here. I feel very uncomfortable when people attempt to pry into things that I'm not willing to share. For example, topics like "which center do you go to" or "please post pics" and so forth are just a few that make me want to pull back. I choose not to respond to them because I have the right to be discrete about my life and CF.

I have an inkling as to whose "authenticity" is being called into question. Please don't jab at anyone's scars--they may not be healed yet.

I don't particularly think that knowing everyone's background or life experience credentials or any such thing should have any bearing on how people interact on this forum. Each of us has something to contribute in one form or another to the forum. We meet each other where we are.

I think of it as a big "come as you are" party. Some of us are all put together, hair perfectly coiffed and ready to take on the world. Others of us barefoot and disheveled with eye-crusties and streaked mascara from an exhausting night. No matter who posts to the forum, pretty much anything CF related (past hurts, current successes, and future hopes) can be posted here, and that's what makes it such a beneficial community.

 

[lightNlife]

I very much disagree. The added safety of anonymity that is afforded by this site is one of the reasons I am here. I feel very uncomfortable when people attempt to pry into things that I'm not willing to share. For example, topics like "which center do you go to" or "please post pics" and so forth are just a few that make me want to pull back. I choose not to respond to them because I have the right to be discrete about my life and CF.

I have an inkling as to whose "authenticity" is being called into question. Please don't jab at anyone's scars--they may not be healed yet.

I don't particularly think that knowing everyone's background or life experience credentials or any such thing should have any bearing on how people interact on this forum. Each of us has something to contribute in one form or another to the forum. We meet each other where we are.

I think of it as a big "come as you are" party. Some of us are all put together, hair perfectly coiffed and ready to take on the world. Others of us barefoot and disheveled with eye-crusties and streaked mascara from an exhausting night. No matter who posts to the forum, pretty much anything CF related (past hurts, current successes, and future hopes) can be posted here, and that's what makes it such a beneficial community.

 

[dyza]

I find it difficult enough sending Xmas cards to the USA, never mind sending some kind of letter verifing myself, postage costs and all that. Bad idea, if we had to give this info, then I rekon that nobody from this side of the Atlantic or the other side of the Pacific would join.