Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 > Hi guys...I was just cleaning out my email files and noticed that I > hadn't sent my " Unofficial disclaimer " in awhile... So here it is... Hi CCI guys... > CCI 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 has both support and good information...and one in which > members > can feel safe. > > > But 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 posts of 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/> > Quote Link to comment Share on other sites More sharing options...
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