Guest guest Posted May 12, 2011 Report Share Posted May 12, 2011 >> 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 the Website at >> http://www.chiariconnectioninternational.com/> >> > > > > > ------------------------------------ > > Please Visit Our Website at: http://www.chiariconnectioninternational.com/ > Lots Of Information That May Be Helpful > > > > > > Quote Link to comment Share on other sites More sharing options...
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