Unofficial disclaimer...especially for the newer members

[Guest guest]

Hi CCI guys...

I would like to again welcome all the new members and also thanks to ALL

members for helping to make this the kind of

list that Kathleen and I had envisioned. A place with support and good

information...and one in which members can feel safe. We will continue to strive

to maintain this...

I haven't issued the " unofficial

disclaimer " in awhile and we have a lot of new members <g> (18 in the last

7 days for a total of 1259 ACTIVE list members. And all of this since just

January 26,2007....Kathleen & I, as well as the other staff members,thank you

sooooooooooo much for joining and supporting this chiari endeavor.

Some of the recent posts prompted me to send this out... I probably should have

done so sooner!

Please be aware that..as wonderfully helpful as this list is

for people dealing with the problems associated with chiari...It's membership is

NOT a

true cross section of the chiari community, at large. For this reason it can

seem somewhat negative to people who are new here.

The list is populated, mainly,by those who are newly diagnosed with ACM,or

related disorders, or suspect that they are dealing with it.....

There are also some " oldies " who hang around to try to

help " newbies " ....and those with on going problems that they are hoping to find

answers.

Those who have come to the list, had successful surgery, and are

feeling good again.....tend to leave to get on with their lives. This

leaves somewhat of an imbalance on the list and can lead to the perception of

negative leanings.

It is important that you, the list member, understand this and put what you

read here in this perspective!

Another concept, mentioned to me by a member,deserves mention as well. I will

paraphrase <g>... She suggested that,maybe I could include a little reminder

that, with the exception of the Dr. B posts, or those of other chiari " experts " ,

none of us are " professionals " (granted, there may be times when we FEEL like we

are " professional patients " , but that's a whole 'nother story! <VBG>), and just

because someone " never heard of that " doesn't mean it isn't so! Even so . . .

the more knowledgeable of the list, always try to make it clear that they are

speaking only from either their own experience or from what they have gleaned

from reliable sources.

I.E. when reading posts here, consider the source... This is important... Some,

by the " nature of the beast " are more factual than others. Chiari is an area

where there is much " opinion " .... wish that there were more " carved in stone "

FACTS... This list tries to sort out the good from the bad, AMAP. But some of it

must be left up to the reader to evaluate.

All best wishes,

Sally R

ACM..Decompression '91...

Hydro..VP shunt..2 revisions

Doing GREAT in Bethlehem,Pa with NO medications

Ps...I would also heartily recommend checking out the links and files sections

of the CCI Yahoo homepage.

http://health.groups.yahoo.com/group//

There is some good information there....

And also PLEASE visit our Website at

http://www.chiariconnectioninternational.com/, that has done such a great

job with!