controversial message about e-mail content

[Guest guest]

If I have to, I will create two groups. They will be divided as following:

1st group= support, and all that goes along with it.

2nd group= only technical things.

I really don't want to do this, because I love the group the way it is. Our

group has grown so fast, and with each new member, brings more posts. I

don't want to limit our members, or the amount that each person can post. I

will admit though, I am very troubled by this. To me, it feels as if our

" family " is falling apart. When I first created this group, my rules were

that everyone post freely, and that there is more to a PSCers life than just

PSC. Not only do we need help with the symptoms of PSC, but because of the

disease, we are already under a tremendous amount of stress....we also need

help with the other things that go on. I will leave the decision up to the

group, and please just let me know if you would like me to create a group

entitled " psc technical support " or something to that effect.

[Guest guest]

Dear Group;

I ask you all to think about what messages benefit this group e-mail site, and

which are personal, and to please seperate the two. I have switched from

reading each message to getting the summary index of our group messages.

Because of the shear volume of messages and my time constraints I am

dissapointed to say that I am reading fewer and fewer messages, and

participating even less. There is still a lot of great information at this

site, but heavily diluted with a lot of messages that are really between 2

people. I feel ought personal messages should be handled off line so they

don't fill up the message board of this site. As long as I am on my soapbox,

please be as desriptive as possible in your subject heading for those readers

like me. Thank you for your time.

Dirk, 40, married 5 years, 2 children, diagnosed with PSC for 18 years

[Guest guest]

athan wrote:

<snip>

> If it has new information

> of any sort (technical, personal or otherwise!) that you want the whole

> group to know about, by all means post it to the whole group!

>

Or if it has any questions for the whole group. We certainly don't want

to discourage the asking of questions! :-)

athan

[Guest guest]

Hi ,

I totally agree with you. In time everyone regulates everything said and

done. If this is not a Communist country now, what is?

We HAVE to wear our seatbelts -- I have no problem as I wear mine

anyway; but for the government to tell ME that I HAVE to wear seatbelts --

go figure.

Now the Federal Government is suing the tobacco industry. We cannot

smoke in freedom anymore. In Europe, it is strange not to see people

smoking -- even the most elite. Their info on the deaths related to

cigarette smoking is that it is no more dangerous than drinking or driving.

Every do-gooder has taken it upon themselves that they should be able to

regulate cigarette smoke to people -- even over 50! What about liquor? Does

anyone ever say anything about liquor and what this does to the human

body -- and how deeply it hurts a family of the alcoholic, forever. Not just

death, but for them to live with the actions of a drunk, dead or alive, for

the rest of their lives.

Believe it or not, I am a registered Democrat. But I have always voted

for the person.

Biddy

PS: Yes I smoke. My doctors said why not -- anything that will relax me and

I enjoy. After all, they said, smoking is not going to kill me -- the liver

will do that for me. My father was an alcoholic (and I have to say a very

distinguished drunk) and he died at the age of 63 from alcoholic cirrhosis.

Go figure.

Re: controversial message about e-mail content

>I'm sure that many people will disagree with this, but I feel that I have

to

>give my opinion. When I started this group, I started it with the

intentions

>of us being one HUGE family. The technical side to this disease is VERY

>important, but it's also important to have people to " talk " to. As the

> " leader " of this group, I have posted several times about what was

happening

>in my life, things that had nothing to do with PSC. I feel that this IS a

> " support " group, and we are all here to support one another. I do not want

>to lose any members, and I will go along with whatever the rest of the

group

>decides. I will say though, that I will dearly miss the days when we

posted

>freely.

>Love,

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

I'm one that's been about to drop this list because the volume is just more

than I can manage. But I don't really *want* to drop the list. And I

understand that a lot of people really do want the personal chatty kinda

stuff. Me, though, I'm here to get information that will help me better

understand what my dad is going through and what he's going to be facing in

the future. I'm not really here for the support stuff as much.

Maybe it would help everyone on the list to develop some sort of system

where you put <all> in the subject line if it's either giving info or asking

for info that's important for the whole group, and <personal> if it's more

of a family & friends sort of message? Then people like me could just sort on

the subject line, and only read the ones we're most interested in (and if

it's a slow day, read more of the others).

What do you think?

Regards,

Charli

> Re: controversial message about e-mail content

>

>

> I'm sure that many people will disagree with this, but I feel

> that I have to

> give my opinion. When I started this group, I started it

> with the intentions

> of us being one HUGE family. The technical side to this

> disease is VERY

> important, but it's also important to have people to " talk "

> to. As the

> " leader " of this group, I have posted several times about

> what was happening

> in my life, things that had nothing to do with PSC. I feel

> that this IS a

> " support " group, and we are all here to support one another.

> I do not want

> to lose any members, and I will go along with whatever the

> rest of the group

> decides. I will say though, that I will dearly miss the days

> when we posted

> freely.

> Love,

>

>

> --------------------------------------------------------------

> ----------

>

> eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

[Guest guest]

The group could be split into information and support branches,

but both would be poorer for doing that. Better use of the

subject line would help those who are overburdened by the shear

volume of mail, but it is hard to remember to put a good subject

in every time. Freely posting allow us to be part of extended

community that knows each other and what is going on (except

when I talk behind you back, so to speak).

Some groups have a policy of replying to the originator who then

summarizes the replies. This cuts way down on the number of

messages to the list, but doesn't allow the review and

correction that we have now - if I tell to sit on her

duff and not go the ER, there will be a flurry of postings to

give better advice. I think the current methodology is the price

you have to pay to have the best group possible.

Tim

__________________________________________________

[Guest guest]

, I am in agreement with Peg. I benefit alot by both the technical

info and the emotional support. Both help me to help my husband. I simply

scan the posting quickly and decide if I want to read it thoroughly. Just my

opinion. Liz

[Guest guest]

I think clear subject lines would help, too.

I think if we had two groups, people who had both technical info and support

to share would post only in the support group -- so those of us who want

technical info would end up having to monitor both groups. I think, as

others have said, the net result would be detrimental to both groups.

But if people kept an eye on the subject lines, and maybe flagged those that

are most technical so people who want that info could find it without too

much effort, then maybe the volume wouldn't seem so overwhelming.

Regards,

Charli

> Re: controversial message about e-mail content

>

>

> ,

> Don't be upset! I think the best solution would be that

> everyone make sure they

> pay attention to the subject and change it to be more

> discriptive of what you

> are writing. It's not hard, just hit reply and go into the

> subject line and

> change it. I don't think there should be 2 groups because I

> like to read all

> the posts and do want to have to access 2 groups. I was

> afraid that some of us

> (me included) might get a little too windy and that might

> scare off new

> members. I had noticed, when doing my poll that we have a

> lot of new members

> that have not posted and some older (not age) that have not

> been posting and

> wondered if what Dirk said was true.

>

> I do think that we need both technical & emotional support.

> But if we identify

> better about what we're posting that will make it easier to

> be selective if we

> don't have the time, or desire to read all the posts. We

> should think a little

> when we post about what a new person might think when reading

> our stuff. If I

> hadn't posted that we got a new kitty, which by the way has

> had a tremendous

> theraputic effect on Phil, I wouldn't have had as many good

> conversations

> (privately) with Penny.

>

> So now that I've blabbered on too long, as usual I think we

> mainly need to WATCH

> THE SUBJECT TITLES. My 2 cents.

> Peg

>

> WYBEAR21@... wrote:

>

> > If I have to, I will create two groups. They will be

> divided as following:

> > 1st group= support, and all that goes along with it.

> > 2nd group= only technical things.

> > I really don't want to do this, because I love the group

> the way it is. Our

> > group has grown so fast, and with each new member, brings

> more posts. I

> > don't want to limit our members, or the amount that each

> person can post. I

> > will admit though, I am very troubled by this. To me, it

> feels as if our

> > " family " is falling apart. When I first created this

> group, my rules were

> > that everyone post freely, and that there is more to a

> PSCers life than just

> > PSC. Not only do we need help with the symptoms of PSC,

> but because of the

> > disease, we are already under a tremendous amount of

> stress....we also need

> > help with the other things that go on. I will leave the

> decision up to the

> > group, and please just let me know if you would like me to

> create a group

> > entitled " psc technical support " or something to that effect.

> >

> >

> >

> --------------------------------------------------------------

> ----------

> >

> > eGroups.com home: /group/

> > - Simplifying group communications

>

>

>

>

> --------------------------------------------------------------

> ----------

>

> eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

[Guest guest]

I totally agree with you . I feel that whats happening in the total

picture of our lives is a part of the PSC/ Liver support. Sometimes

discussions between 2 people may be personal but have bits of medical info in

it. I agree the Subject heading should be more detailed, but in whole I feel

like we should take each other as we are both medically & personnaly. No hard

feelings...just an opinion.

Teri- PSC/UC in NC

[Guest guest]

...

I so agree with you...Information is great...but just living and sharing is

so important....It may just be a female thing...we like to share

....everything...but thats who we are...and when sometimes the only place that

you can get a smile is from here....Well we NEED it... Sharing our inner

feelings and our fears....THIS IS THE PLACE...along with that some fun...some

HUGS ...etc...I hope this doesn't change....I come here for ALL OF IT......

Like TV....if you don't want to see(read) it then pass it by...I am on 4

other boards for Tyler and get up to 300 posts a day....I read what I can and

add what I can and skip what I have to....Wish I had much more time....

Thank you for doing such a good job here...being right on everything...

Hope you are feeling better.....

Luanne Ty's mom

[Guest guest]

There have been many times that I have opened my mail and went " WOW 80

emails! " but, as someone else said, I think that is the price you have to

pay for having a wonderful group. I really don't want to lose any members,

but I would understand if a few left, and started a group JUST for the

technical information. We would still keep this group the way it has been,

and always will be. I honestly think though, that if a group was just

technical, you would be missing out everything that a " SUPPORT group " is all

about. My decision is this: We are going to keep this group the way it is,

but I ask that everyone please pay attention to the subject line (I'm guilty

of this myself). If anyone is upset about this, or would like to share their

opinion with me, feel free to email me personally to do so, or share it with

the group. This group would be nothing without each one of you, and as I

stated previously, I sincerely hope that we don't lose any members because of

this.

Love,

[Guest guest]

I agree with Teri, et al concerning the support group remaining one. I also

agree that it is most helpful to make the subject line appropriate.

Dianne A.

[Guest guest]

,

My vote is to leave the group as is, but to encourage better use of the subject

line if people want to scan what they read. I get a lot out of the personal as

well as the technical stuff.

Just my 2Cents worth

WYBEAR21@... wrote:

> If I have to, I will create two groups. They will be divided as following:

> 1st group= support, and all that goes along with it.

> 2nd group= only technical things.

> I really don't want to do this, because I love the group the way it is. Our

> group has grown so fast, and with each new member, brings more posts. I

> don't want to limit our members, or the amount that each person can post. I

> will admit though, I am very troubled by this. To me, it feels as if our

> " family " is falling apart. When I first created this group, my rules were

> that everyone post freely, and that there is more to a PSCers life than just

> PSC. Not only do we need help with the symptoms of PSC, but because of the

> disease, we are already under a tremendous amount of stress....we also need

> help with the other things that go on. I will leave the decision up to the

> group, and please just let me know if you would like me to create a group

> entitled " psc technical support " or something to that effect.

>

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Jonathon,

The only thing is... sometimes the " me too's " help the entire group

learn about possible side effects of medications, or possible symptoms that

our doctors may disregard. If nausea for example, was a rare symptom, and

everyone was posting " well, I have this also " , then it would let the group

know that YES it does happen. I must admit, that I did take the suggestion

of changing the group personally. Mainly because I created the group, and

felt responsible for the problems occuring in it. I'm not blaming it on

anyone at all, sometimes I'm just a tad bit too emotional. But I do want to

thank everyone for giving their suggestions, and opinions to make this a

better support group. God bless you all!

Love,

[Guest guest]

Biddy Santon wrote:

>

> Hi!

> I think you have always done a " bang up " job on this site. When I

> started here, over a year ago, no other site had the personal touch that

> this one has. We not only learn more about our disease, but we can know how

> it affects our lives through members telling us. This is what makes this so

> special and I vote to leave it the way it is.

I really don't think anyone was suggesting that we change the group at

all as far as the subject matter (ie technical vs. support or any such

thing). The original suggestions that were made were to make sure

subject lines were accurate (in other words if the thread started out

about subject A, but now were to subject C, the subject header should

reflect this. This will make it easier to decide which messages to read

when we're short on time.), and to send mail that only concerned one

person to only that person. It would be left up to each individual to

decide exactly how to implement these guidelines. I don't think anyone

was asking for anyone to slap someone on the hand each time they posted

something that was " inapropriate " .

> I don't know who started all of this friction, but whomever did it

> should be ashamed.

PLEASE don't let us get all upset about this! It all started with a very

simple and reasonable request. I don't think that *anyone* was trying

to start friction... just trying to address a concern, and to make the

group better for all of us.

>Not all of us with this " devil " disease understand what

> is happening to us, why it is happening to us, what to expect, etc., etc.,

> etc.

> If this is only going to be a technical website, than we can go to

> several others.

I don't think anyone asked for it to be only technical. I know I want

it to be a support group that includes all types of support....

emotional, technical, spiritual etc.

Every email listserver I've ever been on has gone through this kind of

discussion from time to time. Sometimes things got quite nasty, and

sometimes sometimes they didn't, but in just about every case I think

the main problem was a misunderstanding about what was being requested.

I think what we need to all do is to realize that no one is trying to

tear apart the group or change its essential nature. If people on both

sides of the issue will try to be as understanding and forgiving of the

others as we can, I think it will all work out fine, and we can end up

with a group that is even better for all of us.

Just my $.02

athan

[Guest guest]

Sleepy5916@... wrote:

>

> athan ,

> In regards to you wanting people to send something privatly, I have related

> and learned from many " private " postings.

I have too. The main type of posting I was suggesting that be sent by

private email was the sort of " me too " messages that we see sometimes.

If several peole have already responded to a message and I'm basically

wanting to say the same thing they did, my inclination would be to send

the person a private email that says in effect " me too " . That way they

know I saw the message, and that I'm supporting them emotionaly but the

rest of the people don't have to read one more message that says the

same thing as a bunch of others already have.

> I would think that that is what was

> intended for this SUPPORT GROUP.

Definitely. I don't want that to change at all. I think that the fact

that this is a good support group is part of the cause for all the

messages. I don't want to do anything that will hurt our ability to

support each other in all ways (emotional, informational and

otherwise). I think there are things we can do that will help those of

us who don't always have time to read each and every message figure out

which ones would be best to spend our time reading, and I think we can

do it without hurting the groups ability to provide support. I was

trying to suggest some things that I thought would help.

>I for one hope that things don't change

> unless it is the " Subject " titles.

I think the idea of adding something to the subject line that would

indicate whether or not it contained new material might be a good

alternative too. One newsgroup I sometimes visit puts a ~ before the

subject of any messages that contain material that might be

objectionable to some of the group members. Maybe we could do something

like that? What do y'all think?

athan

[Guest guest]

Dearest Group,

Well, here's a message from the big airhead of the whole entire group. I

was not aware that there was any friction at all. I have always been

impressed with the way subjects are handled with " kid gloves " sometimes so as

to not alarm anyone else with a symptom that may not be necessarily alarming.

But I do think that it is so important that we focus on Jesus' #1

command... " Love one another as I have loved you. " This is such a terrific

group and I pray there will never be any strife amongst the members.

And....everyone please please give a hand and lots of prayers for

keeping this group going even though this has probably been the worst year of

her life. I love her dearly...she is truly an angel!!

There's my $.03 cents!! Ha!

Love, Jacquelyn

[Guest guest]

Thanks ! Just very emotional about this site. If I, in

any way, upset someone please forgive me.

Biddy

Re: controversial message about e-mail content

>

>

>Biddy Santon wrote:

>>

>> Hi!

>> I think you have always done a " bang up " job on this site. When I

>> started here, over a year ago, no other site had the personal touch that

>> this one has. We not only learn more about our disease, but we can know

how

>> it affects our lives through members telling us. This is what makes this

so

>> special and I vote to leave it the way it is.

>

>I really don't think anyone was suggesting that we change the group at

>all as far as the subject matter (ie technical vs. support or any such

>thing). The original suggestions that were made were to make sure

>subject lines were accurate (in other words if the thread started out

>about subject A, but now were to subject C, the subject header should

>reflect this. This will make it easier to decide which messages to read

>when we're short on time.), and to send mail that only concerned one

>person to only that person. It would be left up to each individual to

>decide exactly how to implement these guidelines. I don't think anyone

>was asking for anyone to slap someone on the hand each time they posted

>something that was " inapropriate " .

>

>> I don't know who started all of this friction, but whomever did it

>> should be ashamed.

>

>PLEASE don't let us get all upset about this! It all started with a very

>simple and reasonable request. I don't think that *anyone* was trying

>to start friction... just trying to address a concern, and to make the

>group better for all of us.

>

>>Not all of us with this " devil " disease understand what

>> is happening to us, why it is happening to us, what to expect, etc.,

etc.,

>> etc.

>> If this is only going to be a technical website, than we can go to

>> several others.

>

>I don't think anyone asked for it to be only technical. I know I want

>it to be a support group that includes all types of support....

>emotional, technical, spiritual etc.

>

>Every email listserver I've ever been on has gone through this kind of

>discussion from time to time. Sometimes things got quite nasty, and

>sometimes sometimes they didn't, but in just about every case I think

>the main problem was a misunderstanding about what was being requested.

>I think what we need to all do is to realize that no one is trying to

>tear apart the group or change its essential nature. If people on both

>sides of the issue will try to be as understanding and forgiving of the

>others as we can, I think it will all work out fine, and we can end up

>with a group that is even better for all of us.

>

>Just my $.02

>

>athan

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Let's hear it for !!!!! Go for it -- you are one-in-a-million! Thank

God I got to know you -- lifesaver and heart saver!

Hugs,

Biddy

Re: controversial message about e-mail content

>Jonathon,

> The only thing is... sometimes the " me too's " help the entire group

>learn about possible side effects of medications, or possible symptoms that

>our doctors may disregard. If nausea for example, was a rare symptom, and

>everyone was posting " well, I have this also " , then it would let the group

>know that YES it does happen. I must admit, that I did take the suggestion

>of changing the group personally. Mainly because I created the group, and

>felt responsible for the problems occuring in it. I'm not blaming it on

>anyone at all, sometimes I'm just a tad bit too emotional. But I do want

to

>thank everyone for giving their suggestions, and opinions to make this a

>better support group. God bless you all!

>Love,

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Thanks athan,

I agree with you. Nobody should be slapped down for making a suggestion to make

the group better and changing the subject line is not that hard.

Peg

athan wrote:

> Biddy Santon wrote:

> >

> > Hi!

> > I think you have always done a " bang up " job on this site. When I

> > started here, over a year ago, no other site had the personal touch that

> > this one has. We not only learn more about our disease, but we can know how

> > it affects our lives through members telling us. This is what makes this so

> > special and I vote to leave it the way it is.

>

> I really don't think anyone was suggesting that we change the group at

> all as far as the subject matter (ie technical vs. support or any such

> thing). The original suggestions that were made were to make sure

> subject lines were accurate (in other words if the thread started out

> about subject A, but now were to subject C, the subject header should

> reflect this. This will make it easier to decide which messages to read

> when we're short on time.), and to send mail that only concerned one

> person to only that person. It would be left up to each individual to

> decide exactly how to implement these guidelines. I don't think anyone

> was asking for anyone to slap someone on the hand each time they posted

> something that was " inapropriate " .

>

> > I don't know who started all of this friction, but whomever did it

> > should be ashamed.

>

> PLEASE don't let us get all upset about this! It all started with a very

> simple and reasonable request. I don't think that *anyone* was trying

> to start friction... just trying to address a concern, and to make the

> group better for all of us.

>

> >Not all of us with this " devil " disease understand what

> > is happening to us, why it is happening to us, what to expect, etc., etc.,

> > etc.

> > If this is only going to be a technical website, than we can go to

> > several others.

>

> I don't think anyone asked for it to be only technical. I know I want

> it to be a support group that includes all types of support....

> emotional, technical, spiritual etc.

>

> Every email listserver I've ever been on has gone through this kind of

> discussion from time to time. Sometimes things got quite nasty, and

> sometimes sometimes they didn't, but in just about every case I think

> the main problem was a misunderstanding about what was being requested.

> I think what we need to all do is to realize that no one is trying to

> tear apart the group or change its essential nature. If people on both

> sides of the issue will try to be as understanding and forgiving of the

> others as we can, I think it will all work out fine, and we can end up

> with a group that is even better for all of us.

>

> Just my $.02

>

> athan

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Well I guess I just did what you said isn't good about reitterating what another

person has to say on the group but sometimes, like my last message, I want the

group to know that I agree with you.

Peg

athan wrote:

> Sleepy5916@... wrote:

> >

> > athan ,

> > In regards to you wanting people to send something privatly, I have related

> > and learned from many " private " postings.

>

> I have too. The main type of posting I was suggesting that be sent by

> private email was the sort of " me too " messages that we see sometimes.

> If several peole have already responded to a message and I'm basically

> wanting to say the same thing they did, my inclination would be to send

> the person a private email that says in effect " me too " . That way they

> know I saw the message, and that I'm supporting them emotionaly but the

> rest of the people don't have to read one more message that says the

> same thing as a bunch of others already have.

>

> > I would think that that is what was

> > intended for this SUPPORT GROUP.

>

> Definitely. I don't want that to change at all. I think that the fact

> that this is a good support group is part of the cause for all the

> messages. I don't want to do anything that will hurt our ability to

> support each other in all ways (emotional, informational and

> otherwise). I think there are things we can do that will help those of

> us who don't always have time to read each and every message figure out

> which ones would be best to spend our time reading, and I think we can

> do it without hurting the groups ability to provide support. I was

> trying to suggest some things that I thought would help.

>

> >I for one hope that things don't change

> > unless it is the " Subject " titles.

>

> I think the idea of adding something to the subject line that would

> indicate whether or not it contained new material might be a good

> alternative too. One newsgroup I sometimes visit puts a ~ before the

> subject of any messages that contain material that might be

> objectionable to some of the group members. Maybe we could do something

> like that? What do y'all think?

>

> athan

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Hear! Hear! Jacquelyn. We owe this kind and beautiful lady our sanity if

not our lives and she has done this through so much strife in her own life.

Bet most of us couldn't do that -- know I couldn't. I am way to

selfish -- but no Tiff! One-in-a-million!

Hugs,

Biddy

Re: controversial message about e-mail content

>Dearest Group,

> Well, here's a message from the big airhead of the whole entire group.

I

>was not aware that there was any friction at all. I have always been

>impressed with the way subjects are handled with " kid gloves " sometimes so

as

>to not alarm anyone else with a symptom that may not be necessarily

alarming.

> But I do think that it is so important that we focus on Jesus' #1

>command... " Love one another as I have loved you. " This is such a terrific

>group and I pray there will never be any strife amongst the members.

> And....everyone please please give a hand and lots of prayers

for

>keeping this group going even though this has probably been the worst year

of

>her life. I love her dearly...she is truly an angel!!

> There's my $.03 cents!! Ha!

> Love, Jacquelyn

>

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