Re: Don't delete archives?

[Guest guest]

Georgina & group:

I would hate to delete the archives b/c it has such valuable info for

us, such as anecdotal info on reactions to new medicines, gov't

programs info, etc. Stuff that's not in articles.

In terms of 2 lists, I think that's not a bad idea, just so people

can get articles in " digest " format, etc. Maybe call it jra-info.

Also, I have a few other ideas re screening out researchers and

retaining privacy:

1) Require approval of moderator (you) before getting on list. This

way you can get a sense if they are a jra parent or patient.

2) People shouldn't give out too much info like last name, address,

tel., wk email, etc. when posing.

3) I delete the birthday/info chart, which I think is becoming less

and less useful as the group grows.

What do you think.

Charlie

[Guest guest]

what difference does it make if you are a parent or a patient? both

are just as informative as the other, both points of view are

needed. i have needed you parents' view several times and several

parents have emailed me with questions as well. also, do you realize

you just referred to your child, and the rest of us jra-ers, as " the

patient " ? ps, this is in no way intended to insult or bug anyone,

just thought i should throw that in since my posts have a bad history

of doing both those things. i just thought it, so i said it.

> Georgina & group:

>

> I would hate to delete the archives b/c it has such valuable info

for

> us, such as anecdotal info on reactions to new medicines, gov't

> programs info, etc. Stuff that's not in articles.

>

> In terms of 2 lists, I think that's not a bad idea, just so people

> can get articles in " digest " format, etc. Maybe call it jra-info.

>

> Also, I have a few other ideas re screening out researchers and

> retaining privacy:

> 1) Require approval of moderator (you) before getting on list.

This

> way you can get a sense if they are a jra parent or patient.

> 2) People shouldn't give out too much info like last name, address,

> tel., wk email, etc. when posing.

> 3) I delete the birthday/info chart, which I think is becoming less

> and less useful as the group grows.

>

> What do you think.

>

> Charlie

[Guest guest]

Hi ,

You're absolutely right. I think having the perspective of those who are

caregivers as well as those who have personal experience are equally

important and valuable. I've been able to learn a lot from these kinds

of contributions on the list. We have, in the past, had people come to

us for help in research and high school/college projects. It all seemed

pretty innocent and if the things I ordinarily write in my posts could

help, I didn't mind helping. I just worried that we might some day have

people like those mentioned in the article, which might be disruptive to

the group. People who have absolutely no connection to JRA in their

lives but who, rather, are trying to examine the ways we respond to one

another. Studying our group dynamics. It's a tricky situation. One I'm

still not quite sure how to handle. Maybe we should just wait and see

what happens (if anything)?

Maybe I've just been thiking too much

Take care,

Georgina

brandy_erin@... wrote:

> what difference does it make if you are a parent or a patient? both

> are just as informative as the other, both points of view are

> needed. i have needed you parents' view several times and several

> parents have emailed me with questions as well. also, do you realize

> you just referred to your child, and the rest of us jra-ers, as " the

> patient " ? ps, this is in no way intended to insult or bug anyone,

> just thought i should throw that in since my posts have a bad history

> of doing both those things. i just thought it, so i said it.

[Guest guest]

Hi Charlie,

Thanks for your input on this. The way I was thinking, we would all

still have access to the important info we receive in our individual

emails, just that maybe we shouldn't archive those posts ... to prevent

the same, sometimes personal info, from getting into the hands of

others. Personally, I don't have a problem with people reading anything

that I've ever written here. I just wouldn't want anyone else to have

worries about that. I wondered, even, if many here even use the archived

messages feature? I was really excited when they put in a search

feature, as it was easier to go back and find a topic of concern or

interest later. Wasn't sure that others even used the service, though.

I think the idea of having 2 lists, one specifically for posts about

news and research, is a good idea. In fact, I'll send out an invitation

to join to all our list members this coming week. We can all be set to

digest for this one, so when there's news we'll get it all in one email

message.

Yes, I think you're right about the birthday chart. As we have so many

members these days, far from the original 8 families we began with,

maybe that's not quite as practical as it once was. Plus, I think it's

nicer and more personal to send electronic greeting cards through to the

personal email address, instead of through the list. On another large

list that I was a member of one person was in charge of posting a

general birthday list one time each month. New members, if they wanted

to, could request that their birthdate be added. The only info posted on

the list was member's first name, their personal email addy, and the

date of their birthday. As the list was posted once every month, anyone

who felt like they wanted to send a birthday greeting could be reminded

to do so. This may be an option here, too.

Also, your tips about what info people shouldn't post publically, e.g.

last name, address, tel., wk email, etc. is very good advice. Most

people already follow these guidelines. Others should.

I haven't used my moderator priveleges to pre-screen members to the

group. One reason is because I used to get soooo many email inquiries

each week, about arthritis and JRA, that I felt it would be better to

direct new people to our group, instead of to me personally, so that all

group members could offer their input instead of taking on that

responsibilty myself. In fact, on our webpage I even deleted our

personal email address and left, instead, the subscribing info about our

. It has cut back a lot on the amount of spam, and personal

inquiries that require a long and detailed response, that I get. I don't

have quite as much time to spend online these days as I used to, so this

was done for, hmmm .... 'selfish' reasons? No, not being selfish. Just

wanting to be sure that people could receive the timely replies and

information that they deserve, even if I don't have a chance to get

online right away.

Well, those are the things that I've been thinking of. If anybody has

any other comments I'd be happy to hear about them. Just want to try to

make this list the best it can be. Open for suggestions, of course

Right now though, the children are getting ready for us to go to the

beach. Have just a half hour left. Kayla's home from school for 2 weeks,

for intercession, but I'll still try to get on for a little while each

day (or night). We'll work all these things through and come up with

good solutions, I'm sure.

Aloha,

Georgina

Charlie S wrote:

> Georgina & group:

>

> I would hate to delete the archives b/c it has such valuable info for

> us, such as anecdotal info on reactions to new medicines, gov't

> programs info, etc. Stuff that's not in articles.

>

> In terms of 2 lists, I think that's not a bad idea, just so people

> can get articles in " digest " format, etc. Maybe call it jra-info.

>

> Also, I have a few other ideas re screening out researchers and

> retaining privacy:

> 1) Require approval of moderator (you) before getting on list. This

> way you can get a sense if they are a jra parent or patient.

> 2) People shouldn't give out too much info like last name, address,

> tel., wk email, etc. when posing.

> 3) I delete the birthday/info chart, which I think is becoming less

> and less useful as the group grows.

>

> What do you think.

>

> Charlie

[Guest guest]

Georgina:

I'll wait to hear definitively from you (and others) whether okay to

delete BirthdayInfo chart. If I don't hear otherwise, I'll take it

off in a week or so. Maybe I'd still keep a copy on my computer so

that if someone was looking for another person in a certain location

I could offer email address of persons who live nearby.

In terms of deleting archives, how would you even go through 7304

messages to delete them? Again, my personal preference would be not

to delete, since the search of archives is such a valuable tool for

us. But of course you have to weigh all the factors and decide.

Regards from Rena.

Regards to Josh.

Fondly,

Charlie

cc: Group

> > Georgina & group:

> >

> > I would hate to delete the archives b/c it has such valuable info

for

> > us, such as anecdotal info on reactions to new medicines, gov't

> > programs info, etc. Stuff that's not in articles.

> >

> > In terms of 2 lists, I think that's not a bad idea, just so people

> > can get articles in " digest " format, etc. Maybe call it jra-info.

> >

> > Also, I have a few other ideas re screening out researchers and

> > retaining privacy:

> > 1) Require approval of moderator (you) before getting on list.

This

> > way you can get a sense if they are a jra parent or patient.

> > 2) People shouldn't give out too much info like last name,

address,

> > tel., wk email, etc. when posing.

> > 3) I delete the birthday/info chart, which I think is becoming

less

> > and less useful as the group grows.

> >

> > What do you think.

> >

> > Charlie

[Guest guest]

hi charlie, i guess " jra-er " is the best term, i dunno either, but

patient made my skin crawl, yuck. anyway, i didnt know about how to

research the archives until i saw you and georgina discussing it.

thanks. to georgina, why in the world would researchers join this

list secretly? arent they supposed to know more than us? i had

never thought that docs or other researchers would be reading these

posts, weird huh? brandy

> > > Georgina & group:

> > >

> > > I would hate to delete the archives b/c it has such valuable

info

> > for

> > > us, such as anecdotal info on reactions to new medicines, gov't

> > > programs info, etc. Stuff that's not in articles.

> > >

> > > In terms of 2 lists, I think that's not a bad idea, just so

> people

> > > can get articles in " digest " format, etc. Maybe call it jra-

info.

> > >

> > > Also, I have a few other ideas re screening out researchers and

> > > retaining privacy:

> > > 1) Require approval of moderator (you) before getting on list.

> > This

> > > way you can get a sense if they are a jra parent or patient.

> > > 2) People shouldn't give out too much info like last name,

> address,

> > > tel., wk email, etc. when posing.

> > > 3) I delete the birthday/info chart, which I think is becoming

> less

> > > and less useful as the group grows.

> > >

> > > What do you think.

> > >

> > > Charlie

[Guest guest]

brandy_erin@... wrote:

> to georgina, why in the world would researchers join this

> list secretly? arent they supposed to know more than us? i had

> never thought that docs or other researchers would be reading these

> posts, weird huh? brandy

Hi ,

I don't really know. Sometimes people do study group dynamics, though. I

actually took a course in that while in college and each of us had to

choose a group to study. Observe how they interacted. Discuss the

different member roles. That kind of thing. Like it pointed out in that

article, people these days can do it very easily online. Without anyone

being aware that they're being observed. It also said in the article

that when researchers ask for permission first, participants often 'clam

up,' making observations of natural settings more difficult. Maybe I was

just being paranoid?

I don't think we have any researchers here but if we do ... please

introduce yourselves

~Georgina

[Guest guest]

Hi Charlie,

I guess you're right. We do have a lot of good info stored there, in the

archives. Perhaps it's best if we keep it. As a side note, all it takes

is the click of one button and it would be gone. Automatically. No need

to go through each and every message If that was the case, there

would be absolutely no question about it staying!

Charlie S wrote:

> Georgina:

>

> I'll wait to hear definitively from you (and others) whether okay to

> delete BirthdayInfo chart. If I don't hear otherwise, I'll take it

> off in a week or so. Maybe I'd still keep a copy on my computer so

> that if someone was looking for another person in a certain location

> I could offer email address of persons who live nearby.

>

> In terms of deleting archives, how would you even go through 7304

> messages to delete them? Again, my personal preference would be not

> to delete, since the search of archives is such a valuable tool for

> us. But of course you have to weigh all the factors and decide.

>

> Regards from Rena.

> Regards to Josh.

>

> Fondly,

> Charlie

>

> cc: Group

[Guest guest]

Hi Charlie,

I guess you're right. We do have a lot of good info stored there, in the

archives. Perhaps it's best if we keep it. As a side note, all it takes

is the click of one button and it would be gone. Automatically. No need

to go through each and every message If that was the case, there

would be absolutely no question about it staying!

Take care,

Georgina

Charlie S wrote:

> Georgina:

>

> I'll wait to hear definitively from you (and others) whether okay to

> delete BirthdayInfo chart. If I don't hear otherwise, I'll take it

> off in a week or so. Maybe I'd still keep a copy on my computer so

> that if someone was looking for another person in a certain location

> I could offer email address of persons who live nearby.

>

> In terms of deleting archives, how would you even go through 7304

> messages to delete them? Again, my personal preference would be not

> to delete, since the search of archives is such a valuable tool for

> us. But of course you have to weigh all the factors and decide.

>

> Regards from Rena.

> Regards to Josh.

>

> Fondly,

> Charlie

>

> cc: Group

[Guest guest]

Maybe the researchers want to look at the disease process, from the patients

view.

To be able to completely understand it. I do not think anybody understands

what this disease is like until they have a child with it. If they can

understand how the patients feel they can only be better caregivers. But

these people sghould stay out of the

chats. Good Luck SHU

[Guest guest]

Georgina, as you consider our privacy, though we should safeguard some things, I feel it is good to remain open as a source of study and information to outsiders.

Personally, if someone just wants to study group dynamics or some form of psychology from an outsiders view I welcome it, so long as they are not deliberately trying to aggrivate a situation. I welcome their learning and understanding what we go through. Perhaps they might be able to contribute positive thought here or in an outside arena. However, if they are playing games or stiring up trouble it is a sick thing, we have enough to deal with. I find it fascinating that BOTH lists I am on are simultaneously addressing this type of issue. I am comforted that positive and proactive action by our moderators has proven affective in keeping this type of problem in check. Thanks to you for your efforts.

Sincerly,

Hi ,You're absolutely right. I think having the perspective of those who arecaregivers as well as those who have personal experience are equallyimportant and valuable. I've been able to learn a lot from these kindsof contributions on the list. We have, in the past, had people come tous for help in research and high school/college projects. It all seemedpretty innocent and if the things I ordinarily write in my posts couldhelp, I didn't mind helping. I just worried that we might some day havepeople like those mentioned in the article, which might be disruptive tothe group. People who have absolutely no connection to JRA in theirlives but who, rather, are trying to examine the ways we respond to oneanother. Studying our group dynamics. It's a tricky situation. One I'mstill not quite sure how to handle. Maybe we should just wait and seewhat happens (if anything)? Maybe I've just been thiking too much :)Take care,Georgina