Re: Please read, for the sake of the group.

[Guest guest]

Thank you, Brent. It is clear how much the group means to you, and I share

that with you.

I hope people will take the time to learn how to cut and paste someone's

personal address and direct a response just to that person.

I certainly don't want people to be driven away from this list either because

they want/need to send chatty e-mail or because they don't want to read

emails meant for others.

The comment about doctors was very much on target. At one time, we had a

rheumatologist who actively monitored our list and made extremely helpful

input. During another time when the e-mails became more personal and less

Still's related, she stopped monitoring. It has been a loss, and it would

sure be nice if another doc checked us out and decided to hang out a bit.

With a little extra effort, I think we can keep this list relevant and

informative for all.

Marcia

[Guest guest]

Thank you Brent,

I know I, for one, am very " guilty " of doing just what you wrote about!!

With your gentle reminder, hopefully I will " think " before I " type and

send. "

I do apologize to all for my " chatter " that wasn't disease related.

I don't apologize however for my e-mail about my puppy, because I

had put O.T. (Off Topic) in the subject line..so it could be deleted by

those who knew it was *not* anything disease related.

I also think it is a good idea to include our personal e-mail address

which I have been guilty of not doing.

Tricia

wega2@...

Please read, for the sake of the group.

> Hello Everyone.

>

> I'm sitting here trying to think of a diplomatic and polite way of getting

> the message across about not using the list as a chat group and personal

> forum. , Cat, and I have written to group members on this several

> times, but the messages have either been lost in the jumble or have been

> ignored.

>

> I'm about to unsub again, as are others, because it has become too much of

a

> burden to wade through all of the personal messages. When one is ill, and

> looking for help, or trying to help others, any impediment is hard to

> overcome. We all have to remember how very ill some of us are, and how

much

> effort it takes just to sit at the computer and read, let alone endure the

> often very painful and tiring tasks of moving a mouse around or typing a

few

> lines. Those that are this ill are the ones that need help the most, and

in

> an easy to navigate format.

>

> Also, Cat made good point: What if a doctor was to drop in to audit this

> group to see if it was a good place to direct a Stills patient for

> alterative help, and see all of the messages that have absolutely no value

> to a Stills patient whatsoever? The doctor would turn away. It would be

a

> shame to allow an environment to continue to exist that would prevent

> someone from finding help from others that suffer from the same thing

that

> they do. Just think back how much finding this group has helped you

> personally, and you will understand what I mean. And this is the only such

> group For Stills disease that exists.

>

> I asked a few questions this week that were related to Stills, and

expressed

> a personal theory on the effects of Prednisone on Stills, and I got some

> great replies that not only helped me, but may have helped others. But I

> had to sift through over 30 junk-e-mails to find them, in one sitting. I

> read them all, just to see what they were about. Most should have been

sent

> to one person, not the entire group, and many were simply over-the-fence

> chatting.

>

> I don't know all the answers. Trying to moderate a group, without

stopping

> the flow of good information and ideas, chasing off good people, or

hurting

> feelings, is a difficult task, but failing to moderate can have the same

> negative effects. I realize many people truly need to keep in touch with

> others that understand their plight in order to deal with the social

> ramifications of this disease, and those type of letters, if directed at

> more than one person are appropriate, and so is content that is intended

to

> humor us or lift our spirits. Lord know we need it at times. There is

other

> subject matter that may not be medically related that is OK too, and most

> everyone has the good judgment to know what these are.

>

> But using the group list for sending messages that are completely off

> subject or apply to a single individual, or as a chat room, is having a

> negative effect on the ability of those who try to help others with

medical

> and social problems caused by Stills to get through and succeed. And this

> is not only sad, but because helping others deal with Still Disease is one

> of the prime objectives and reason for the existence of this particular

> e-mail group.

>

> So please, use a chat room or e-mail each other directly when appropriate,

> and try to compose your subject line so that it is applicable to the

content

> of your message or reply. If we all try our best to do this, we can be

more

> effective in helping each other, and the group as a whole deal with what

> ails us.

>

> All of you are wonderful, caring people, and we are all like members of a

> large extended family here. Together, we can improve our health and

lives,

> as well as others.

>

> Sincerely,

> Brent

>

>

>

>

>

[Guest guest]

Kathi, first of all thank you very much for your note-

Second if I might address some of these concerns- to those of you I have yet

to " meet " my name is Beth, I am co-vice president along with Cat of the

Stills Foundation. I am fortunate enough to have met this wonderful group of

people almost 5 years ago. I was diagnosed with Stills about 11 years ago

and have been very active with the group until about 1 year ago when I found

it necessary to take a " leave of absence " if you will due to my father's

severe illness. I am fortunate enough with my Still's right now that I can

work at a job I absolutely adore (teaching) and I live with my parents right

now to help out after work.

So that is a little background about me, now if I might shed a little light-

we have been an online group for about 5 years since Tom founded our

organization. During that time we have grown from about 5 members to approx.

400! We had to learn quickly and many times stumble in how to run the group

and the email list- we have had so many wonderful things go on and from time

to time we have had our complaints as well.... and we try to learn from those

complaints. How? We studied other very long term online groups, namely the

Lupus Foundation, if you have ever been a part of their website message

boards or mailing list, you will find that in order to run their

organization effectly they put in place VERY strict rules regarding messages

and mailings- we have tried to find a happy medium. We never want to sound

uncaring or unyielding, but we are just trying to do the very best job we

can- please help us, we love and care about each and every person on this

list and has so elequently been stated recently, United We Stand, Divided

We Fall.

I want to end this by asking all of you to hang in there with us- I for one

need the knowlege, support, love, kindness and prayers provided by each of

you and would never want to lose anyone.

Thank you, with much love,

Beth

[Guest guest]

This is probably one of those messages that I should wait before I send, but

you know how moody we are:) With that disclaimer, may I now step upon my

soapbox and rant:

I don't think I have ever seen recent posts that could be classified as

" junk " as it was phrased. I know that's controversial, but I think that was

an especially mean, hurtful thing to say, especially to people who very

often find their only solace in this list. I see people taking significant

amounts of time and effort to type responses. Their time is valuable too.

Everybody is busy. Everybody is sick. That's who we are.

I think it's quite ironic that now we have seen people chastised for posting

too much medical information *and* for posting too much personal

information.

Y'all, I think it's important to recognize that many of us come here for

reasons other than medical information, regardless of the impact that may

have on the referral of some hypothetical doctor. The emotional outlet that

this list provides is every bit as important to many of us as the

medications that the doctors provide.

I think that we are lucky to have every single person in this group. All of

us are kind, warm and very accepting of the human condition. We are

especially blessed to have the gifts that some, like Jen, give us.( All the

research and stuff has to take a horrid amount of time and effort. She gives

so much to us.... )

I have certain messages that I either " skim " or don't read. Sometimes, those

are about medicines. Long term side effects. Sometimes, I drop off-list for

replies that are personal. Sometimes I don't. It can depend on my mood.

Sometimes I am hoping that somebody else will read it and chime in, too.

Sometimes I'm too tired to bother opening up a new window and all that.

I don't know what my point is, or if I have one, but I wasn't letting that

slide.

Angie

Please read, for the sake of the group.

> Hello Everyone.

>

> I'm sitting here trying to think of a diplomatic and polite way of getting

> the message across about not using the list as a chat group and personal

> forum. , Cat, and I have written to group members on this several

> times, but the messages have either been lost in the jumble or have been

> ignored.

>

> I'm about to unsub again, as are others, because it has become too much of

a

> burden to wade through all of the personal messages. When one is ill, and

> looking for help, or trying to help others, any impediment is hard to

> overcome. We all have to remember how very ill some of us are, and how

much

> effort it takes just to sit at the computer and read, let alone endure the

> often very painful and tiring tasks of moving a mouse around or typing a

few

> lines. Those that are this ill are the ones that need help the most, and

in

> an easy to navigate format.

>

> Also, Cat made good point: What if a doctor was to drop in to audit this

> group to see if it was a good place to direct a Stills patient for

> alterative help, and see all of the messages that have absolutely no value

> to a Stills patient whatsoever? The doctor would turn away. It would be

a

> shame to allow an environment to continue to exist that would prevent

> someone from finding help from others that suffer from the same thing

that

> they do. Just think back how much finding this group has helped you

> personally, and you will understand what I mean. And this is the only such

> group For Stills disease that exists.

>

> I asked a few questions this week that were related to Stills, and

expressed

> a personal theory on the effects of Prednisone on Stills, and I got some

> great replies that not only helped me, but may have helped others. But I

> had to sift through over 30 junk-e-mails to find them, in one sitting. I

> read them all, just to see what they were about. Most should have been

sent

> to one person, not the entire group, and many were simply over-the-fence

> chatting.

>

> I don't know all the answers. Trying to moderate a group, without

stopping

> the flow of good information and ideas, chasing off good people, or

hurting

> feelings, is a difficult task, but failing to moderate can have the same

> negative effects. I realize many people truly need to keep in touch with

> others that understand their plight in order to deal with the social

> ramifications of this disease, and those type of letters, if directed at

> more than one person are appropriate, and so is content that is intended

to

> humor us or lift our spirits. Lord know we need it at times. There is

other

> subject matter that may not be medically related that is OK too, and most

> everyone has the good judgment to know what these are.

>

> But using the group list for sending messages that are completely off

> subject or apply to a single individual, or as a chat room, is having a

> negative effect on the ability of those who try to help others with

medical

> and social problems caused by Stills to get through and succeed. And this

> is not only sad, but because helping others deal with Still Disease is one

> of the prime objectives and reason for the existence of this particular

> e-mail group.

>

> So please, use a chat room or e-mail each other directly when appropriate,

> and try to compose your subject line so that it is applicable to the

content

> of your message or reply. If we all try our best to do this, we can be

more

> effective in helping each other, and the group as a whole deal with what

> ails us.

>

> All of you are wonderful, caring people, and we are all like members of a

> large extended family here. Together, we can improve our health and

lives,

> as well as others.

>

> Sincerely,

> Brent

>

>

>

>

>

[Guest guest]

Okay, I don't speak often negative at all, but now my " feathers are in a

small ruffle " I will say. I will definitely admit at times, that we may

get off course here, but this is a SUPPORT GROUP, is it not? This is a

second family to me. I do not classify any of this mail " junk mail " and I

think that the wrong words were definitely used. I feel that maybe we or

people did get a little off course these past few weeks in light of the

tragedy that America faced. I know for myself, that I was highly stressed

over the situation and could not sleep. I almost became obsessed over it,

perhaps, because I am a mother, a woman and we tend to worry more, but I

felt that the group could deal with it for a week or so and let one another

talk about their feelings, because we all know that stress can bring on a

" flare " very quickly. I did not count any of these " junk mail " .....we are

humans, I am not the " sickness " .....I am a human being and I know how to use

a " delete key " . I take the time to try and answer everyone, be supportive

and be a very important part of this group, because the people here mean the

world to me and we are all going through the same thing, and please, please

lets not forget, that some of us here are still very new at all this. I do

not know all these medical terms or drugs. I am still not so educated as

others are here on this site about treatments, but I sit back, listen and

learn from EVERYONE, not just the people that really know what they are

talking about, but the people that are facing perhaps the same problems,

have the same questions, and are feeling the same way I do. I am just

learning about this disease, and at times, I am highly confused with the

conversations here. Sometimes I feel like a " fish out of water " sort of

speak and I so much want to contribute but cannot and this bothers me. I

know that as times goes by, I will become more educated on this disease, but

let's not single people out because they are not completely talking about

their disease all the time. A lot of other factors have to do with this

disease and bring on " flares " and I feel that the people have this right to

discuss it here with others. I without a doubt, do believe that when we are

addressing someone or something and responding to others messages, that the

" subject " line should definitely be changed.....this eliminates a lot of

mail that may not need to be read by others. I think this helps out a lot,

and I do hope that when a doctor does possibly go on-line or has this person

see what a kind and compassionate group this is that he just doesn't see a

bunch of " robots " here either. I would hope that he would see a true

SUPPORT GROUP for Stills Disease. It is not all about the drugs and

treatments, it is about being human too, and needing the support, when we

possibly do not get it from our own homes. I may not have your knowledge

of everything here, but I can sure contribute my compassion and loving

support because it comes natural and I want to, I really want to. I hope

to be at your highly educated point someday Brent, but until then, all I can

do is ask questions and give true support and my friendship. Let us also not

forget that we need a soft side too now and then, and when people are having

problems with family, puppies, children or anything out of character,

somehow this all has to do with Stills and I feel at CERTAIN TIMES, that

these discussions are important as a group, and I hope that a doctor would

see that, and I feel if he or she is a doctor, that they would both see kind

relationships, compassion and very strong knowledge of this Stills Dragon,

and feel very comfortable for their patient to be a part of this family.

After all, isn't that what a doctor is all about??

Sincerely, Sue #2

[Guest guest]

So, how does one serve on the board? Are they elected positions, or

volunteer? If it's volunteer, I'd gladly step up. I certainly don't want

anybody thinking that I don't truly care about the group because I'm not on

the board.

This is unrelated - but does the foundation have a tax id number? If it

does, those of us living near Marsh stores (Connie? ? Ellen - whatever

happened to Ellen, anyway?) could be generating income simply by shopping

and using our " Fresh Idea " card.

As far the other subject goes, we're not all going to agree. But I *like*

hearing about Tom's snakes, Tricia's puppies, Jen's baby plans, and the

threat of losing that causes me stress. (Won't you feel bad if I flare ?!?)

Actually ,I have a half-baked idea - maybe one person could be complaint

central. So, if Person A felt that Person B was posting too much personal

stuff, Person A could send a note off to a pre-designated " mediator. " If

that person reviewed the specifics and agreed, then it would be appropriate

for the mediator to either address Person B personally, or the group as a

whole, depending on the situation. In the very least, the term " junk mail "

should certainly be avoided.

To be blunt, I don't know what my sed rates are or should be. I don't keep

track of any of that stuff. Maybe I should, but I let my RD do that. I don't

have the type of mind that organizes that information well, and I don't lose

any sleep over it.

I am sorry that most of you are sicker than I. But I need this group for

other things. Perhaps it's grown into something other than was originally

intended, but that is certainly not a bad thing.

Angie

[Guest guest]

Well whilst we're all having our say on the subject!

I've been a part of this group for I think nearly 2 years. I don't often

post, but I read almost everything. It has been an invaluable source of

information and support. Sometimes it just helps to know that others are

going through the same as me, and makes me feel a little more " normal " . By

seeing that others have common experiences with the disease and reactions

to drugs it makes things less scary.

There is also a lot of medical experience on here - it's all very well

reading the list of side-effects of a drug, but far more useful to hear

peoples' real experiences with them.

I do not want separate groups for emotional / medical / social. They are

all part of living with Stills (or RA) and I want to see the whole thing

represented here. The idle chit-chat between friends sharing a common

bond, the ups and downs, the excellent medical experiences.

We are whole people, please lets keep the list whole too.

Graham.

At 05:57 24/09/2001, you wrote:

> I liked your two cents. I like the holistic approach myself. This

>disease affects mind, body and spirit.

>

[Guest guest]

Graham,

Bravo! I loved the way you expressed yourself. I too

feel the whole person is important. To have a healthy

body you must have a healthy mind.

Bridget

__________________________________________________