Re: Is this Group still active?

[Guest guest]

Cheryl, I notice you have just joined the group and we welcome you. You are

wondering if you missed any posts. There are over 1700 people subscribed to

this list which use to be very active until a few years ago when we had some

people join us from another group whose objectives were different from ours.

It caused quite a stir with subscribers scurrying into the 'woodwork', and

things have not been the same since.

These people have formed their own group but now it seems when people do

post on this list for or with information or needing support, responses for

the most part are made privately. This has been a concern to the moderators

and we would like feedback from the group as to whether you still value this

list.

Ethel

rheumatic Is this Group still active?

> Please let me know if there are more recent posts that I am not seeing

> on this Group.

>

> Cheryl Ferguson

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Hi Ethel;

I do not post very often as I am doing excedingly well and leading a

normal life running my orchid business.When I do see something that

catches my eye I always answer with " reply all " This site is very,very

helpful

Lynne Guimond

Scleroderma

Ethel Snooks wrote:

> Cheryl, I notice you have just joined the group and we welcome you.

> You are

> wondering if you missed any posts. There are over 1700 people

> subscribed to

> this list which use to be very active until a few years ago when we

> had some

> people join us from another group whose objectives were different from

> ours.

> It caused quite a stir with subscribers scurrying into the 'woodwork',

> and

> things have not been the same since.

>

> These people have formed their own group but now it seems when people do

> post on this list for or with information or needing support,

> responses for

> the most part are made privately. This has been a concern to the

> moderators

> and we would like feedback from the group as to whether you still

> value this

> list.

>

> Ethel

>

> rheumatic Is this Group still active?

>

> > Please let me know if there are more recent posts that I am not seeing

> > on this Group.

> >

> > Cheryl Ferguson

> >

> >

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> <mailto:rheumatic-unsubscribe%40>

> >

> >

[Guest guest]

Hi Ethel,

This group was a godsend for me when I first became ill. It was also a

place to come for advice and ideas. I have been feeling great these last few

years and I know that I have been guilty in regard to the reply button. You

never know what information could be useful to all. I'd be happy to answer

any post with reply to all. I believe this group still has a lot of value.

I did notice that posts were way down I just wasn't sure why. Count me in!

Regards,

Dee

Re: rheumatic Is this Group still active?

Cheryl, I notice you have just joined the group and we welcome you. You are

wondering if you missed any posts. There are over 1700 people subscribed to

this list which use to be very active until a few years ago when we had some

people join us from another group whose objectives were different from ours.

It caused quite a stir with subscribers scurrying into the 'woodwork', and

things have not been the same since.

These people have formed their own group but now it seems when people do

post on this list for or with information or needing support, responses for

the most part are made privately. This has been a concern to the moderators

and we would like feedback from the group as to whether you still value this

list.

Ethel

rheumatic Is this Group still active?

> Please let me know if there are more recent posts that I am not seeing

> on this Group.

>

> Cheryl Ferguson

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

If this group ever disappeared I would be VERY upset. Whenever I have a question

my first place to look for advice is this group and Ethel. PLEASE, don't think

about disbanding the group. While I did notice some things happening with the

posts, I hope that this group revives to its abililty and potential of helping

people find help and answers to their questions. I am disappointed with the drop

in responses to questions, but hopefully this will turn around.

Roni in PA.

--------- rheumatic Is this Group still active?

>

>

> > Please let me know if there are more recent posts that I am not seeing

> > on this Group.

> >

> > Cheryl Ferguson

> >

> >

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

> >

[Guest guest]

On 6/11/06 7:56 AM, " Ethel Snooks " <emsnooks@...> wrote:

> These people have formed their own group but now it seems when people do

> post on this list for or with information or needing support, responses for

> the most part are made privately. This has been a concern to the moderators

> and we would like feedback from the group as to whether you still value this

> list.

Why not try setting the list so that reply to list is the default? If it

doesn't work out, it's easy to change back after a trial period. The default

for every other list I am on is reply to list, the fact that this list is

not set up in the normal way discourages group interaction.

I still read the list regularly, but don't post so much any more. When do

post, I often forget I have to redirect my reply to get it to go to the

list.

--

Jean

[Guest guest]

When I first joined in 1997, this group was so supportive and motivating and

caring. Those qualities got me through a very difficult time, especially

since it was the first time I had ever really gone again standard medical

practice. People here gave me the courage to do that and I benefited for

quite a few years. The group has changed in character many times over the

years since I joined. And while the tone is different now, there is still

much value to having a group like this especially since the antibiotic

protocol is still not widely accepted among many doctors. In addition to

that, there has been over the years a wealth of information for supportive

measures we need to take to help our bodies deal with these rheumatic

diseases. It means a lot to be able to contact someone who has and is going

through similar diseases or someone like yourself Ethel, who has had a lot

of experience and contact with medical people. So, the bottom line is that

I do hope you Ethel and continue to run this group. You can't begin

to know how many people you have helped and influenced over the years and

will continue to do so if the group remains. Thank you both for all you do

to help so many people.

rheumatic Is this Group still active?

> Please let me know if there are more recent posts that I am not seeing

> on this Group.

>

> Cheryl Ferguson

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

I am now a " sleeper " on the group, but it was invaluable to me when I

joined and I still check regularly for information and encouragement.

If it disappeared, we would all be trying to manage our disease and the

antibiotic protocol on our own! That's an awful thought. It is an

extremely worthwhile service, and Ethel. Because the antibiotics

take time, we need to know that it's working or what to do if there are

problems, otherwise I think people would give up and try something

else. My RA is very manageable now. Thankyou.

Gail

On 12/06/2006, at 11:02 AM, Ken and wrote:

> When I first joined in 1997, this group was so supportive and

> motivating and

> caring. Those qualities got me through a very difficult time,

> especially

> since it was the first time I had ever really gone again standard

> medical

> practice. People here gave me the courage to do that and I benefited

> for

> quite a few years. The group has changed in character many times over

> the

> years since I joined. And while the tone is different now, there is

> still

> much value to having a group like this especially since the antibiotic

> protocol is still not widely accepted among many doctors. In addition

> to

> that, there has been over the years a wealth of information for

> supportive

> measures we need to take to help our bodies deal with these rheumatic

> diseases. It means a lot to be able to contact someone who has and is

> going

> through similar diseases or someone like yourself Ethel, who has had a

> lot

> of experience and contact with medical people. So, the bottom line is

> that

> I do hope you Ethel and continue to run this group. You can't

> begin

> to know how many people you have helped and influenced over the years

> and

> will continue to do so if the group remains. Thank you both for all

> you do

> to help so many people.

>

>

>

> rheumatic Is this Group still active?

>

>

>> Please let me know if there are more recent posts that I am not seeing

>> on this Group.

>>

>> Cheryl Ferguson

>>

>>

>>

>>

>>

>>

>> To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

[Guest guest]

Dear Diane,

I'll pray for you to. It sounds like you and your little guy have been

through a lot

Best Wishes and prayers to you. Hope your son is improving.

Lynne A

[Guest guest]

Hi

We did initially have the default as " reply to the group " but then the

whole list got all one-liners like " I agree " " Good for you " and chatty

stuff which a lot of people didn't want, so we got complaints about

that. We also got people's private arguments on several occasions.

How do others feel?

Chris.

On 12/06/2006, at 6:02 AM, Probert wrote:

> On 6/11/06 7:56 AM, " Ethel Snooks " <emsnooks@...> wrote:

>

>> These people have formed their own group but now it seems when people

>> do

>> post on this list for or with information or needing support,

>> responses for

>> the most part are made privately. This has been a concern to the

>> moderators

>> and we would like feedback from the group as to whether you still

>> value this

>> list.

>

> Why not try setting the list so that reply to list is the default? If

> it

> doesn't work out, it's easy to change back after a trial period. The

> default

> for every other list I am on is reply to list, the fact that this list

> is

> not set up in the normal way discourages group interaction.

>

> I still read the list regularly, but don't post so much any more. When

> do

> post, I often forget I have to redirect my reply to get it to go to the

> list.

>

> --

>

> Jean

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

On 6/11/06 9:17 PM, " Adlard " <cadlard@...> wrote:

> Hi

>

> We did initially have the default as " reply to the group " but then the

> whole list got all one-liners like " I agree " " Good for you " and chatty

> stuff which a lot of people didn't want, so we got complaints about

> that. We also got people's private arguments on several occasions.

Yes, I know that was the history of the list... I was just suggesting trying

something else, to give it a little life again, might be worth a try.

I think it might be worthwhile, but if it doesn't work out, you can always

revert.

I've been on the list myself since 1999, and know it is not nearly so active

now as it was 7 years ago, I'd hate to see the list die out.

--

Jean

[Guest guest]

Hello All,

I just want to reply with a resounding THANKS!!!

When my little boy was one he got " something " . After much heartache and

searching I discovered this group and I finally, (after watching, reading,

questioning, and researching,) got the nerve to take him in December of 2004,

when he was four years old, to see Dr. Sinnott and I wish I would have done it

three years before.

I was the victim of Rheumatology. Or, more correctly, my son was the victim of

a chicken, brainwashed mom. When his fingernails began to turn different

colors, ending up BLACK and FALLING OFF, I decided I had enough. More

specifically, I decided he had had enough of the toxic poison I was feeding him,

methotrexate, naproxyn, prednisone. I had it out with his " World Famous, Highly

Published, Brilliant " Pediatric Rheumatologist, left him, and went to another,

who told me " Go ahead, it's worth a try. " It was terrifying to say the least,

especially considering extra-side issues with his father, my estranged

ex-husband who would like nothing more than to have something to hold up for the

world, (or courts), to see what a TERRIBLE mother I am, and " Look, here's

proof " .

So, to keep from boring you any more. Please, please keep it up. For me and

for anyone who comes after me. I need you. Many more who will not say, need

you as well.

Thanks, thanks, a million thanks.

From , who couldn't talk about it in terms I could understand, and from me.

I'm still aching over this, but you guys have helped me heal, and your advice

and prayers

ESPECIALLY PRAYERS

Have helped heal.

God bless all of you,

Diane

Re: rheumatic Is this Group still active?

Hi Ethel;

I do not post very often as I am doing excedingly well and leading a

normal life running my orchid business.When I do see something that

catches my eye I always answer with " reply all " This site is very,very

helpful

Lynne Guimond

Scleroderma

Ethel Snooks wrote:

> Cheryl, I notice you have just joined the group and we welcome you.

> You are

> wondering if you missed any posts. There are over 1700 people

> subscribed to

> this list which use to be very active until a few years ago when we

> had some

> people join us from another group whose objectives were different from

> ours.

> It caused quite a stir with subscribers scurrying into the 'woodwork',

> and

> things have not been the same since.

>

> These people have formed their own group but now it seems when people do

> post on this list for or with information or needing support,

> responses for

> the most part are made privately. This has been a concern to the

> moderators

> and we would like feedback from the group as to whether you still

> value this

> list.

>

> Ethel

>

> rheumatic Is this Group still active?

>

> > Please let me know if there are more recent posts that I am not seeing

> > on this Group.

> >

> > Cheryl Ferguson

> >

> >

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

<mailto:rheumatic-unsubscribe%40>

> <mailto:rheumatic-unsubscribe%40>

> >

> >

[Guest guest]

Thanks Lynne, people like you are a blessing to us all.

Love, Diane

Re: rheumatic Is this Group still active?

Dear Diane,

I'll pray for you to. It sounds like you and your little guy have been

through a lot

Best Wishes and prayers to you. Hope your son is improving.

Lynne A

[Guest guest]

This group has been a valuable resource for me. As a result I always try to

give back a little by responding back to newcomers with similar problems.

Ethel Snooks <emsnooks@...> wrote: Cheryl, I notice you have

just joined the group and we welcome you. You are

wondering if you missed any posts. There are over 1700 people subscribed to

this list which use to be very active until a few years ago when we had some

people join us from another group whose objectives were different from ours.

It caused quite a stir with subscribers scurrying into the 'woodwork', and

things have not been the same since.

These people have formed their own group but now it seems when people do

post on this list for or with information or needing support, responses for

the most part are made privately. This has been a concern to the moderators

and we would like feedback from the group as to whether you still value this

list.

Ethel

rheumatic Is this Group still active?

> Please let me know if there are more recent posts that I am not seeing

> on this Group.

>

> Cheryl Ferguson

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Hi Ethel! Geoff here.

You wrote:

" There are over 1700 people subscribed to this list which use to be very active

until a few years ago when we had some people join us from another group whose

objectives were different from ours.

It caused quite a stir with subscribers scurrying into the 'woodwork', and

things have not been the same since.

These people have formed their own group but now it seems when people do post on

this list for or with information or needing support, responses for the most

part are made privately. This has been a concern to the moderators and we would

like feedback from the group as to whether you still value this list. "

Yes, I do.

The last few years the list has indeed lost much of the warmth and friendliness

it used to have. It seems to have gone from a list of people supporting each

other exploring ways to be CURED of these diseases to a list of people

essentially interested in palliation (cloaking the pain from view). I have no

suggestions, and thus cannot complain. However, if we, the listers, as a group

were more motivated to HEALING than 'living with' these diseases, perhaps the

old warmth would return.

Geoff

Acts 2:39

[Guest guest]

Hello,

This group is VERY valuable to me. Although I rarely contribute, I read the

posts everyday.

This group is the reason I am doing well today.

Thank you,

Rae

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Geoff

Sent: Monday, June 12, 2006 6:59 AM

RA Support Group

Subject: rheumatic Re: Is this Group still active?

Hi Ethel! Geoff here.

You wrote:

" There are over 1700 people subscribed to this list which use to be very

active

until a few years ago when we had some people join us from another group

whose

objectives were different from ours.

It caused quite a stir with subscribers scurrying into the 'woodwork', and

things have not been the same since.

These people have formed their own group but now it seems when people do

post on

this list for or with information or needing support, responses for the most

part are made privately. This has been a concern to the moderators and we

would

like feedback from the group as to whether you still value this list. "

Yes, I do.

The last few years the list has indeed lost much of the warmth and

friendliness

it used to have. It seems to have gone from a list of people supporting each

other exploring ways to be CURED of these diseases to a list of people

essentially interested in palliation (cloaking the pain from view). I have

no

suggestions, and thus cannot complain. However, if we, the listers, as a

group

were more motivated to HEALING than 'living with' these diseases, perhaps

the

old warmth would return.

Geoff

Acts 2:39

[Guest guest]

Here is another consideration. A list I belong to used to be set for " reply

to all " which had unexpected consequences. One list member, unsuspectingly,

put in service one of those automatic " HI I'm out of the office until

Monday " responses. So when a list e-mail came in, it got the automated

response, which went to the whole group, including the " HI I'm out of the

office until Monday " persons computer, which responded with another " HI I'm

out of the office until Monday " message, sent to all...It ended up that all

list members were swamped with the message every few seconds until the list

owner could be found who temporarily took that e-mail address off the list.

That was a couple of years ago, perhaps there are new features available

which would prevent that.

Take care,

Ute

At 07:17 PM 6/11/06, you wrote:

>Hi

>

>We did initially have the default as " reply to the group " but then the

>whole list got all one-liners like " I agree " " Good for you " and chatty

>stuff which a lot of people didn't want, so we got complaints about

>that. We also got people's private arguments on several occasions.

>

>How do others feel?

>Chris.

[Guest guest]

Hope he continues with good health and happiness!!!

Dee

Re: rheumatic Is this Group still active?

Hi Ethel;

I do not post very often as I am doing excedingly well and leading a

normal life running my orchid business.When I do see something that

catches my eye I always answer with " reply all " This site is very,very

helpful

Lynne Guimond

Scleroderma

Ethel Snooks wrote:

> Cheryl, I notice you have just joined the group and we welcome you.

> You are

> wondering if you missed any posts. There are over 1700 people

> subscribed to

> this list which use to be very active until a few years ago when we

> had some

> people join us from another group whose objectives were different from

> ours.

> It caused quite a stir with subscribers scurrying into the 'woodwork',

> and

> things have not been the same since.

>

> These people have formed their own group but now it seems when people do

> post on this list for or with information or needing support,

> responses for

> the most part are made privately. This has been a concern to the

> moderators

> and we would like feedback from the group as to whether you still

> value this

> list.

>

> Ethel

>

> rheumatic Is this Group still active?

>

> > Please let me know if there are more recent posts that I am not seeing

> > on this Group.

> >

> > Cheryl Ferguson

> >

> >

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

<mailto:rheumatic-unsubscribe%40>

> <mailto:rheumatic-unsubscribe%40>

> >

> >

[Guest guest]

I'm starting to see a trend here. I'm guilty of being a sleeper too. Maybe

those of us who are feeling so good that we only check in here and there

need to give something back and not assume someone else will answer a post

and hit the reply to all so we get ideas moving around again. That's what

those who came before me did and it was invaluable.

Dee

Re: rheumatic Is this Group still active?

I am now a " sleeper " on the group, but it was invaluable to me when I

joined and I still check regularly for information and encouragement.

If it disappeared, we would all be trying to manage our disease and the

antibiotic protocol on our own! That's an awful thought. It is an

extremely worthwhile service, and Ethel. Because the antibiotics

take time, we need to know that it's working or what to do if there are

problems, otherwise I think people would give up and try something

else. My RA is very manageable now. Thankyou.

Gail

On 12/06/2006, at 11:02 AM, Ken and wrote:

> When I first joined in 1997, this group was so supportive and

> motivating and

> caring. Those qualities got me through a very difficult time,

> especially

> since it was the first time I had ever really gone again standard

> medical

> practice. People here gave me the courage to do that and I benefited

> for

> quite a few years. The group has changed in character many times over

> the

> years since I joined. And while the tone is different now, there is

> still

> much value to having a group like this especially since the antibiotic

> protocol is still not widely accepted among many doctors. In addition

> to

> that, there has been over the years a wealth of information for

> supportive

> measures we need to take to help our bodies deal with these rheumatic

> diseases. It means a lot to be able to contact someone who has and is

> going

> through similar diseases or someone like yourself Ethel, who has had a

> lot

> of experience and contact with medical people. So, the bottom line is

> that

> I do hope you Ethel and continue to run this group. You can't

> begin

> to know how many people you have helped and influenced over the years

> and

> will continue to do so if the group remains. Thank you both for all

> you do

> to help so many people.

>

>

>

> rheumatic Is this Group still active?

>

>

>> Please let me know if there are more recent posts that I am not seeing

>> on this Group.

>>

>> Cheryl Ferguson

>>

>>

>>

>>

>>

>>

>> To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

[Guest guest]

----- Original Message -----

From: Dee Levine

I'm starting to see a trend here. I'm guilty of being a sleeper too. Maybe

those of us who are feeling so good that we only check in here and there

need to give something back and not assume someone else will answer a post

and hit the reply to all so we get ideas moving around again. That's what

those who came before me did and it was invaluable.

Dee

I've only been on the list a bit over a year, and to me this is a very quiet

list. I joined an RA support list and couldn't handle it - so much babbling and

so many people in despair but not willing to do anything but take the drugs

their doctors recommended (usually the standard methotrexate, etc.). When I

would post about antibiotics, I'd get shot down. I think many people were on

that list so that they had a place to complain.

This list, on the other hand, generally offers help and reassurance.

What I think would be really helpful for those of us still trying to see the

effects of the antibiotics (over a year now, still not seeing much response) is

for those who have gone through this to maybe post a bit of their experiences

and show us that all this waiting is worth it. I know there are success stories

on the website, but it's not the same as having someone on the list post -

someone " real " to us. It would give us a boost and it might help those still

thinking of whether or not antibiotics are the way to go.

So those of you out there who are willing to share a bit of advice, success

story, etc. PLEASE think about posting!

I'm leaving tomorrow for a week, going to a dog show (I'm sore but determined to

still live my life) .. so I may not respond to the stories right away, but I

will stay on mail for the list so I can get back and read them .. I'm sure I

will need them at that point!

[Guest guest]

yes, please do not disband this group

rheumatic Is this Group still active?

>

>

> > Please let me know if there are more recent posts that I am not seeing

> > on this Group.

> >

> > Cheryl Ferguson

> >

> >

> >

> >

> >

> >

> > To unsubscribe, email:

rheumatic-unsubscribeegroups<mailto:rheumatic-unsubscribeegroups>

> >

> >

[Guest guest]

Dee,

You have an excellent point. While this group and Ethel have been a Godsend to

me, and I am steadily improving with SD, I need the opinions and experience from

the " experienced ones " in the group. So please, to all of you who are sleepers

and have been where I and others are in fighting these diseases, please share

and help us out.All of the information is just too good to not to share, and if

doesn't pertain to my situation I just move on.

Thanks!

Roni

--------- rheumatic Is this Group still active?

> >

> >

> >> Please let me know if there are more recent posts that I am not seeing

> >> on this Group.

> >>

> >> Cheryl Ferguson

> >>

> >>

> >>

> >>

> >>

> >>

> >> To unsubscribe, email: rheumatic-unsubscribeegroups

> >>

> >>

[Guest guest]

Hi Roni;

One of these great days I will do a post on how my doc got me fixed

up after not responding to the usual 200mg mino a day.All I have to do

is find the time to sit down for 5 minutes to write it.So much work that

I only check out what is on the computer now and then.Info might be a

bit long. Lynne G.

rb09322@... wrote:

> Dee,

> You have an excellent point. While this group and Ethel have been a

> Godsend to me, and I am steadily improving with SD, I need the

> opinions and experience from the " experienced ones " in the group. So

> please, to all of you who are sleepers and have been where I and

> others are in fighting these diseases, please share and help us

> out.All of the information is just too good to not to share, and if

> doesn't pertain to my situation I just move on.

> Thanks!

> Roni

>

> --------- rheumatic Is this Group still active?

> > >

> > >

> > >> Please let me know if there are more recent posts that I am not

> seeing

> > >> on this Group.

> > >>

> > >> Cheryl Ferguson

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >> To unsubscribe, email: rheumatic-unsubscribeegroups

> <mailto:rheumatic-unsubscribe%40>

> > >>

> > >>