Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Dear uterinefibroids group, Within the last week or so we've had a " new " member join this group and post some rather interesting, and somewhat disturbing (to some of you) email, regarding a wide range of physicians, support people (such as Nora Coffey of HERS), and medical care choices she has made or has been made available to her as options. This individual may not be who she seems to be and I urge caution to all who are choosing to correspond with her offline, outside of this group. She indicated to me this morning that she no longer needs this group as she now has acquired 6 new " buddies " from our membership base who she has been corresponding with privately and " helping. " I urge each of you to please consider carefully the length of time a member has been posting on this list group as well as their history of online support of others prior to contacting them offline. Let me explain. In the past, we have had an individual join this group who has been highly disruptive and inflammatory with no end in sight to her actually seeking out and receiving appropriate care. And, she has seen and spoken to a great many physicians all across this nation. The best doctors in the U.S. have all spoken to this individual and offered her appropriate medical care. For some reason, none of the choices being made available to her fit her expectations and all fall short of what she really wants -- which is truly what we all really want -- for the fibroids to magically disappear. Well, that isn't going to happen so, unfortunately, we often have to simply make a choice based on those that are available in order to move forward with our lives and regain our sense of self again. This individual, however, has spent over 3 years pushing doctors to their limits on what they can do for her -- as well as all the support groups online that I am aware of that help women with fibroids. Her offline posts to me, which are lengthy in expository and extremely inflammatory, number in the 100s at this point. Using a wide range of names she has rejoined this group time and again over the past year under a variety of pseudonyms and each time, when uncovered or revealed, she has responded by attacking me with a barrage of offline email. This time is no exception. Although this email may seem somewhat cryptic to new members, I'm quite certain those that have been on the list group for some time will understand the issues at hand. For all new members, I would urge you simply, use caution in corresponding directly with members outside of the list group. That correspondence is not " on the record " and archived historically for reference (as it is online on this list group) and could net you some unwarranted problems down the road should whatever you write be misconstrued by the individual receiving it. As adults, you are certainly free to make choices of who you wish to correspond with over the Internet and it is not my intent to censor or hinder that at all. Rather, to simply urge caution to those of you who may be new on the Internet and unfamiliar with how it is used by some individuals truly in need of more help than this or any other support group online can offer. My best to all of you as we head into 2002. I'm ready to move on into the New Year as I certainly think 2001 has overstayed its welcome! Peace to all in the coming year, Carla Dionne Executive Director National Uterine Fibroids Foundation 1 (877) 553-NUFF mailto:carla@... http://www.NUFF.org /list/uterinefibroids Author, " Sex, Lies, and the Truth About Uterine Fibroids " " Never doubt that a small group of thoughtful committed citizens can change the world. Indeed it's the only thing that ever has. " Margaret Mead Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Thanks Carla. In addition to what you said I think we should all use our common sense. If your instincts tell you that something is not right it probably isn't. We don't have to respond to everyone and give into their drama, especially when it becomes clear that they are not responding in a rational way. The vast majority of us are sincere and want to give and receive help. We should not spend too much time dealing with those who are not of the same mind. Good health to all in the New Year! > Dear uterinefibroids group, > > Within the last week or so we've had a " new " member join this group and > post some rather interesting, and somewhat disturbing (to some of you) > email, regarding a wide range of physicians, support people (such as > Nora Coffey of HERS), and medical care choices she has made or has been > made available to her as options. This individual may not be who she > seems to be and I urge caution to all who are choosing to correspond > with her offline, outside of this group. She indicated to me this > morning that she no longer needs this group as she now has acquired 6 > new " buddies " from our membership base who she has been corresponding > with privately and " helping. " > > I urge each of you to please consider carefully the length of time a > member has been posting on this list group as well as their history of > online support of others prior to contacting them offline. > > Let me explain. In the past, we have had an individual join this group > who has been highly disruptive and inflammatory with no end in sight to > her actually seeking out and receiving appropriate care. And, she has > seen and spoken to a great many physicians all across this nation. The > best doctors in the U.S. have all spoken to this individual and offered > her appropriate medical care. For some reason, none of the choices > being made available to her fit her expectations and all fall short of > what she really wants -- which is truly what we all really want -- for > the fibroids to magically disappear. Well, that isn't going to happen > so, unfortunately, we often have to simply make a choice based on those > that are available in order to move forward with our lives and regain > our sense of self again. This individual, however, has spent over 3 > years pushing doctors to their limits on what they can do for her -- as > well as all the support groups online that I am aware of that help women > with fibroids. > > Her offline posts to me, which are lengthy in expository and extremely > inflammatory, number in the 100s at this point. Using a wide range of > names she has rejoined this group time and again over the past year > under a variety of pseudonyms and each time, when uncovered or revealed, > she has responded by attacking me with a barrage of offline email. This > time is no exception. > > Although this email may seem somewhat cryptic to new members, I'm quite > certain those that have been on the list group for some time will > understand the issues at hand. For all new members, I would urge you > simply, use caution in corresponding directly with members outside of > the list group. That correspondence is not " on the record " and archived > historically for reference (as it is online on this list group) and > could net you some unwarranted problems down the road should whatever > you write be misconstrued by the individual receiving it. As adults, > you are certainly free to make choices of who you wish to correspond > with over the Internet and it is not my intent to censor or hinder that > at all. Rather, to simply urge caution to those of you who may be new > on the Internet and unfamiliar with how it is used by some individuals > truly in need of more help than this or any other support group online > can offer. > > My best to all of you as we head into 2002. I'm ready to move on into > the New Year as I certainly think 2001 has overstayed its welcome! > > Peace to all in the coming year, > > Carla Dionne > Executive Director > National Uterine Fibroids Foundation > > 1 (877) 553-NUFF > mailto:carla@N... > http://www.NUFF.org > /list/uterinefibroids > Author, " Sex, Lies, and the Truth About Uterine Fibroids " > > " Never doubt that a small group of thoughtful committed citizens can > change the world. Indeed it's the only thing that ever has. " Margaret > Mead > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Thanks Carla. In addition to what you said I think we should all use our common sense. If your instincts tell you that something is not right it probably isn't. We don't have to respond to everyone and give into their drama, especially when it becomes clear that they are not responding in a rational way. The vast majority of us are sincere and want to give and receive help. We should not spend too much time dealing with those who are not of the same mind. Good health to all in the New Year! > Dear uterinefibroids group, > > Within the last week or so we've had a " new " member join this group and > post some rather interesting, and somewhat disturbing (to some of you) > email, regarding a wide range of physicians, support people (such as > Nora Coffey of HERS), and medical care choices she has made or has been > made available to her as options. This individual may not be who she > seems to be and I urge caution to all who are choosing to correspond > with her offline, outside of this group. She indicated to me this > morning that she no longer needs this group as she now has acquired 6 > new " buddies " from our membership base who she has been corresponding > with privately and " helping. " > > I urge each of you to please consider carefully the length of time a > member has been posting on this list group as well as their history of > online support of others prior to contacting them offline. > > Let me explain. In the past, we have had an individual join this group > who has been highly disruptive and inflammatory with no end in sight to > her actually seeking out and receiving appropriate care. And, she has > seen and spoken to a great many physicians all across this nation. The > best doctors in the U.S. have all spoken to this individual and offered > her appropriate medical care. For some reason, none of the choices > being made available to her fit her expectations and all fall short of > what she really wants -- which is truly what we all really want -- for > the fibroids to magically disappear. Well, that isn't going to happen > so, unfortunately, we often have to simply make a choice based on those > that are available in order to move forward with our lives and regain > our sense of self again. This individual, however, has spent over 3 > years pushing doctors to their limits on what they can do for her -- as > well as all the support groups online that I am aware of that help women > with fibroids. > > Her offline posts to me, which are lengthy in expository and extremely > inflammatory, number in the 100s at this point. Using a wide range of > names she has rejoined this group time and again over the past year > under a variety of pseudonyms and each time, when uncovered or revealed, > she has responded by attacking me with a barrage of offline email. This > time is no exception. > > Although this email may seem somewhat cryptic to new members, I'm quite > certain those that have been on the list group for some time will > understand the issues at hand. For all new members, I would urge you > simply, use caution in corresponding directly with members outside of > the list group. That correspondence is not " on the record " and archived > historically for reference (as it is online on this list group) and > could net you some unwarranted problems down the road should whatever > you write be misconstrued by the individual receiving it. As adults, > you are certainly free to make choices of who you wish to correspond > with over the Internet and it is not my intent to censor or hinder that > at all. Rather, to simply urge caution to those of you who may be new > on the Internet and unfamiliar with how it is used by some individuals > truly in need of more help than this or any other support group online > can offer. > > My best to all of you as we head into 2002. I'm ready to move on into > the New Year as I certainly think 2001 has overstayed its welcome! > > Peace to all in the coming year, > > Carla Dionne > Executive Director > National Uterine Fibroids Foundation > > 1 (877) 553-NUFF > mailto:carla@N... > http://www.NUFF.org > /list/uterinefibroids > Author, " Sex, Lies, and the Truth About Uterine Fibroids " > > " Never doubt that a small group of thoughtful committed citizens can > change the world. Indeed it's the only thing that ever has. " Margaret > Mead > > > > Quote Link to comment Share on other sites More sharing options...
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