Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. it is too open, with not moderation and boundaries. But there are people who are in great need of help!! .. Moderated, Seasoned, Tested, Valuable. If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. The database, files, photo's and links do not go away, they are there for you to use!! 13 years of worldwide input... Facebook could never compare. I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. FB is good ..... is invaluable.. Carolyn Holmes mom to Cameron myo'd and fundo'd in May 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 I think the answer lies in how the site serves you and your needs and if FB will do that or not. I have been so informed by our site and it's contributors.... Much more so than any doctor I have seen. Not just information on medical details and research but the emotional support it has given me. It helps so much to know you are not alone and others have learned to cope and we can help new people cope. I dont respond a lot, but I read almost every email. It keeps me sane. Thanks buddies........and bless our knowledgeable gurus Notan and . Dont leave me. I wont leave you!!! in Santa Barbara In a message dated 6/3/2012 6:00:02 P.M. Pacific Daylight Time, weissf@... writes: Ditto! Sent from my iPod On Jun 3, 2012, at 17:34, Zaidenberg <_smichele2@..._ (mailto:smichele2@...) > wrote: > Would it be Facebook instead of ? I hope not. Facebook, I agree, is way too open and not private at all. If Facebook becomes the only option for communicating with this group, I'm afraid I will no longer be able to take part by either just reading everyone's posts and sometimes communicating. I'm not interested in letting the entire worlk no my problems and it will leave the group open to the possibility of all sorts of problems. For instance the potential of employers looking at our FB accounts, etc. Please don't go to FB with this group. I, personally, will be lost. > > > > > > From: Carolyn H <_wooleeacre@..._ (mailto:wooleeacre@...) > > Subject: vs facebook... hmmm.. > _achalasia _ (mailto:achalasia ) > Date: Sunday, June 3, 2012, 3:19 PM > > > > I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. > > it is too open, with not moderation and boundaries. > > But there are people who are in great need of help!! > > .. > Moderated, Seasoned, Tested, Valuable. > > If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. > > The database, files, photo's and links do not go away, they are there for you to use!! > > 13 years of worldwide input... Facebook could never compare. > > I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. > > Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. > > I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. > > FB is good ..... is invaluable.. > > Carolyn Holmes > mom to Cameron > myo'd and fundo'd in May 05 > > [Non-text portions of this message have been removed] > > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
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