Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Well, Thane, that's what you get for thinking! :-) I want my cake and eat it too! I understand what you are saying.....will go with whatever the group wants. Wish there was some way to let the newbies know to dive right in! Cheryl I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Since posting my below message I have recieved several private messages from our group members suggesting that folks send off topic and private messages for other members to their private inbox rather than post them publicly. That way those messages wont dilute our otherwise top quality brand. I just wanted to pass these thoughts along. Thane > > > > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one > > that includes more personal off topic discussions and less about lyme. So I > > wanted to ask you all, What kind of group do you want? Because i'm not sure > > we can have both. > > > > In a group that is mostly lyme information focused there seems to be higher > > quality information shared and new members feel less intimidated to join > > into the discussion. And in a group where we act like old friends and feel > > free to talk about many things non lyme related we find more emotional > > support, which is just as important, but we can come across more cliche-ish, > > discouraging some new members from joining the discussion and asking their > > questions. I guess I have always wanted our group to be a place where sick > > new members can find informed people willing to help and not have to sort > > through Off Topic posts that exhaust their precious little energy. I'm > > probably not the only one who has noticed that we get very few new members > > asking questions anymore. And that to me is a tragedy because there are so > > many wonderful people here who could offer helpful suggestions. And it seems > > its those new questions from members that spurs the very best lyme > > discussion. > > > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it > > staying the smaller closer nit group we have now that enjoys the freedom of > > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the > > discussion. > > > > I of course still boast we've got the best group on the net! > > > > Thane > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 And also, when we do start sending personal and off topic messages to private inboxes rather than publicly posting them we can maintain the high level of support that is unique to our group and at the same time create an environment where new members feel free to join in. Just my thoughts Would love to hear from all of you. Thane > > > > > > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > > personal chit chat to a minimum and focuses mostly on treating lyme to one > > > that includes more personal off topic discussions and less about lyme. So I > > > wanted to ask you all, What kind of group do you want? Because i'm not sure > > > we can have both. > > > > > > In a group that is mostly lyme information focused there seems to be higher > > > quality information shared and new members feel less intimidated to join > > > into the discussion. And in a group where we act like old friends and feel > > > free to talk about many things non lyme related we find more emotional > > > support, which is just as important, but we can come across more cliche-ish, > > > discouraging some new members from joining the discussion and asking their > > > questions. I guess I have always wanted our group to be a place where sick > > > new members can find informed people willing to help and not have to sort > > > through Off Topic posts that exhaust their precious little energy. I'm > > > probably not the only one who has noticed that we get very few new members > > > asking questions anymore. And that to me is a tragedy because there are so > > > many wonderful people here who could offer helpful suggestions. And it seems > > > its those new questions from members that spurs the very best lyme > > > discussion. > > > > > > I want to reassure you that though I am the moderator of this group, it is > > > YOUR group, and its you who choose what you want from it. I am fine with it > > > staying the smaller closer nit group we have now that enjoys the freedom of > > > talking about a whole variety of issues if thats what you want, but just so > > > people understand that its discouraging some new members from joining the > > > discussion. > > > > > > I of course still boast we've got the best group on the net! > > > > > > Thane > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi ThanePeople come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans.Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop). Sometimes I go do things with friends (those people who don't have Lyme)For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend.So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all.I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance.Be well my friend, you're being a good leader.Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi Thane and all although I don't post very often...I just wanted to mention that I have been tremendously supported when I've had the blessing of stumbling across the bantering of others here.....so often I have been validated or amused or energized to go another day and not feel so misunderstood or all alone in my feelings and experiences....I love that it isn't too rigid and yet I do understand that we are all looking for more Rife experiences to be shared in order to help move us all forward. Whatever the group decides....I am still so grateful for the friends here. Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop). Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi Lena et all (is that the proper way to use the "et all" thingy?" I was a little hesitant about writing in about my thoughts and those of several others about our group because I wasn't sure if I could explain myself well, and the last thing I wasnted to imply was that I was in any way unhappy about our group. I LOVE our group! The people who have come together here is amazing to me! And I am incredibly grateful to be among you all. I just wanted to bring to the groups attention that for many of the more sick people, including me at times, sorting through posts that arn't health related can be pretty exhausting. I'm not about to become dictator. :-) Thanks for those of you who have tossed your thoughts into the mix. Thane To: Lyme_and_Rife Sent: Sat, January 9, 2010 9:55:24 PMSubject: Re: I've been thinking... Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop) . Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Thane, I have no trouble with the group the way it is. I like it! Smart aleck remarks and all. :-) I don't know who started the RIFE discussion only list, but I joined it. I'm ordering the last part of my RIFE machine today! I am so thrilled, it is a dream come true. 12 years of Lyme & co. and finally a RIFE machine. I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Congratulations!!! How exciting!!! What smart aleck remarks?! ;-0 Cheryl Thane, I have no trouble with the group the way it is. I like it! Smart aleck remarks and all. :-) I don't know who started the RIFE discussion only list, but I joined it. I'm ordering the last part of my RIFE machine today! I am so thrilled, it is a dream come true. 12 years of Lyme & co. and finally a RIFE machine. I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Great stuff I am picking up a used Dan Tracey rife this week. No idea how i should be treating myself. So all, please be ready for some questions :) Steel h c To: Lyme_and_Rife Sent: Mon, January 11, 2010 10:16:24 AMSubject: Re: I've been thinking... Congratulations! !! How exciting!!! What smart aleck remarks?! ;-0 Cheryl On Mon, Jan 11, 2010 at 5:57 AM, Lajetta <lajettajoyful@ yahoo.com> wrote: Thane, I have no trouble with the group the way it is. I like it! Smart aleck remarks and all. :-) I don't know who started the RIFE discussion only list, but I joined it. I'm ordering the last part of my RIFE machine today! I am so thrilled, it is a dream come true. 12 years of Lyme & co. and finally a RIFE machine. I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Hi Thane,I feel it is important for a group to be very open and to discuss things that we feel are important about Lyme and even important about other things... I also feel it is good to have open banter amongst everyone, after all, we really are a bunch of folks who do care about each other... AND it is important to welcome new folks into the fold and make them feel comfortable... I try to do this with newbie as do others... Newbies should feel pretty welcomed with the info they initially receive and should also feel comfortable to just jump into conversations as we really are a friendly group.. EVERYONE always has something to contribute... I am thinking of just the last month or so several new members are here and they post often, seemed to have fit in right away and they seem to be very comfortable, just like they've been here forever.... I for one make friends quickly as do many others here... The importance of any group should always first be Lyme related, both compassion and education.. But I think it is also important that the group have a " light " flavor of openness about many things of which some of these topics do come back to relate to Lyme... I think for many of us it is easier to talk to others on the group than it is those in person... We have an understanding of each other and for the most part we understand each other's problems... Lyme is more than just a disease, it is about gathering with those who seem to understand each other.. On some of my bad days I am enlightened by some of the banter on the group, it reminds me that while others are ill also, they seem to be having better days and I know I will too soon... The whole purpose of OT is just that, other topic.. I guess if someone is here specifically for rife info, they could just slide by the OT topics... I have never done this as I always gain new info from others even when other topics are discussed... I think it is healthy for the group and I know it is for me! I don't want to learn just about Lyme and rife, I want to be a part of life! Best always,Jim Start Topic I've been thinking... Message List Reply | Forward Message #7489 of 7594 < Prev | Next > I've been seeing how our group has been morphing lately from one that keepspersonal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wantedto ask you all, What kind of group do you want? Because i'm not sure we canhave both.In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join intothe discussion. And in a group where we act like old friends and feel free totalk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some newmembers from joining the discussion and asking their questions. I guess I havealways wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhausttheir precious little energy. I'm probably not the only one who has noticedthat we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpfulsuggestions. And it seems its those new questions from members that spurs thevery best lyme discussion.I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it stayingthe smaller closer nit group we have now that enjoys the freedom of talkingabout a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion.I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 6:14 pm Show Message Option " Thane " thane17 Online Now Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Oh darn Lena,I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader? I knew we had a moderator, but didn't know who it was? !!!! From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking... Message List Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking... Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop). Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest Offline Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Just a little note from one of the not so chit-chatty members(not even a lymie myself). Although I do not get involved too much with the non-lyme conversations, I want to let all you guys know how honored I feel to be a part of this group. Whenever I am desperate for any info for the needs of my son(who does have lyme), you guys are right there with very helpful advice and insights. Thank you from the bottom of my heart. It is wonderful to be able to witness you guys supporting each other and being able to communicate with each other, others who hurt where you hurt. Is that not healing in itself? From my son, I know one of the syptoms of lymes can be just no desire to be with people...too much stress. I think it is great you guys can have fun communicating in this way. Although I do not take the time to read most of the chit chat, I feel a sense of joy when I see you guys are feeling well enough, or simply just choosing to have some fun dispite your many trials. Thanks too for your love and concern for all members. Althoough I do not post often, I love you all and my prayers are with you, Malinda > > I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. > > In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. > > I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. > > I of course still boast we've got the best group on the net! > > Thane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hi Thane and everyone, Thanks for bringing up this thought provoking question. Here's the way it looks to me. When l first found out there was lyme in my family and that doctors, for the most part, wouldn't treat it I was devastated. However, the internet, thank God, showed me that alternative options were available. I found a rife board (that is no longer in existence) and it was my lifeline to hope. But the hope was not in the current posts which were full of chitchat and rarely had much info about rifing. The hope came from the original older posts which were full of detailed accounts of people who had used rife machines and regained their health. The older posts were chock full of detailed information in the way the newer posts were not. If the older posts were not available I would have known nothing about rifing. The newer posts, at that time, were mostly about the numerous other ways to treat lyme and as a newbie I found it completely overwhelming and frightening. Now that I've been in this situation for a while I can see the benefit of knowing about various methods. But to a new person just looking for a way to start rifing it can be a turn off to find so little concrete info about the topic the board is supposed to be about. I can see the benefit of the deep friendships that are made here and I respect that. I've met such wonderful people on boards such as this. But in my experience I take that friendship offline to private emails and telephone conversations. I often think about people now who are where I was a couple of years ago. All this is new to them and maybe they want to just learn more about people experiences with rifing. Where can they go to quickly get up to speed? I don't have the answer but I would love to see more of a focus on rifing. That's just my opinion and I hope it doesn't offend those who think differently Maureen > > > > > > > > > > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > > > personal chit chat to a minimum and focuses mostly on treating lyme to one > > > > that includes more personal off topic discussions and less about lyme. So I > > > > wanted to ask you all, What kind of group do you want? Because i'm not sure > > > > we can have both. > > > > > > > > In a group that is mostly lyme information focused there seems to be higher > > > > quality information shared and new members feel less intimidated to join > > > > into the discussion. And in a group where we act like old friends and feel > > > > free to talk about many things non lyme related we find more emotional > > > > support, which is just as important, but we can come across more cliche-ish, > > > > discouraging some new members from joining the discussion and asking their > > > > questions. I guess I have always wanted our group to be a place where sick > > > > new members can find informed people willing to help and not have to sort > > > > through Off Topic posts that exhaust their precious little energy. I'm > > > > probably not the only one who has noticed that we get very few new members > > > > asking questions anymore. And that to me is a tragedy because there are so > > > > many wonderful people here who could offer helpful suggestions. And it seems > > > > its those new questions from members that spurs the very best lyme > > > > discussion. > > > > > > > > I want to reassure you that though I am the moderator of this group, it is > > > > YOUR group, and its you who choose what you want from it. I am fine with it > > > > staying the smaller closer nit group we have now that enjoys the freedom of > > > > talking about a whole variety of issues if thats what you want, but just so > > > > people understand that its discouraging some new members from joining the > > > > discussion. > > > > > > > > I of course still boast we've got the best group on the net! > > > > > > > > Thane > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 OMG, I am sorry - but sticky notes and going here and there - wow. Too much for my lyme brain to think about or even have to follow! I surely hope we don't get to that point - I would be lost! I would much rather scroll down than have to follow all over God's creation! Just my Lyme addled brain thoughts. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Hi Lena,Really? You do think of Thane as our leader? Hmmmm, maybe that Lyme is really gettin' to you.. :-) When Thane started up our group, I sent him a message saying the best kind of moderator is one who moderates little, and participates like everyone... I told him about Marc and the good success he's had with little moderation, but good participation when he can. A good group will always work things out... When a moderator is always moderating and refereeing, something is wrong... Usually it is just one or two members that don't really belong... Moderating them quickly and even removing them from the group is sometimes the best thing for the whole group... Do you realize with over 4500 posts we have not had a single food fight here! Really, that is impressive and shows just what good people belong to our group... And to my knowledge, Thane has not moderated a single post... Our last group, there were often multiple problems daily and I know many of us were not happy... Now we all seem happy! What a BIG difference... And I am sure I speak for many not just myself when I say how stressful our last group was, I got to the point I was stressed just reading the posts and knew anything I posted would be brutalized by just one member that the moderator allowed to happen.. Now I look forward to sitting down with everyone daily, most of who I call my friends... :-) And you are right, Thane like many of us is dealing with a disease and does not always feel well... I am sure none of us wants to add any stress to his life and by being a peaceful group, he can just belong like the rest of us... Kinda like a Sheriff in an old friendly western town, he can leave his gun at the office... :-) I think this is an easy group for new members to just jump in... Everyone is welcomed and quickly and soon it is like they've been here forever... That is the sign of a great group! I had members on the other group writing directly to me because they feared posting to the group... I got up to 2 weeks behind on my personal e-mails because of this.. I complained to the moderator, telling him the fact there were writing to me and not the group was a sure sign they feared the flavor of the group... But nothing was done... I always get some private messages, but there I was getting 20 - 30 daily! Hey, what does $@#% mean? Uh, you better not answer... :-) My fear when we all left there is what kinda info would newbies and I hear it is not open and informative like here.... I hated to see the community get spit up and I held on up to the last moment, but I think all of us on a single day made up our minds this has to end... What happened to you was the beginning of the avalanche and it REALLY bothered me as you did nothing wrong... And I have been telling others for a long time that stress is a killer for us and I know the flavor of that other group was making me sick, not a healthy situation... I am sure others felt the same way.... Thank goodness we are all here and sharing with each other... Here we long-haulers are appreciated, there we didn't seem to matter, some didn't even want us there... Here we have so many discussions on many topics, there we were mostly limited to a few machines... Many newbies here may not even realize just how fortunate they are to have found this group and can virtually get answers to all Lyme topics and NOBODY here will try to sell them anything... That is probably the most important thing about any group, " NO SELLING ALLOWED! " And isn't it interesting we all came here and have not had a single problem! And the real nice thing about this group is your beautiful writing about Lyme and other topics...:-) You have a way of working the words to eloquently make your point... Be well Lena, Jim I've been thinking... Message List Reply | Forward Message #7612 of 7817 < Prev | Next > Re: Re: I've been thinking... Hi Jim, I think of Thane as our leader. He moderates with a light and tolerant hand, and by doing so, has helped this group thrive. I know he doesn't always feel great, and is silent at times, but I feel his presence and appreciate it. As for conspiring: that's a stressful activity I don't have the energy for. WYSIWYG with me. I love this group and it is an important part of my life. I trust it, with all its fluctuations and morphing, and am deeply touched by the very recent posts of newbies who have been lurking and now are coming forward. Welcome, all of you. We Need you! Every newbie is another seeker of info and the more seekers we have, the more info will be found. They may think they need us long-haulers, but we need them just as much: partly because our being able to give answers shows us that this $@#% disease has been teaching us stuff, that our suffering isn't in vain if we can ease another's fears and concerns, and partly because they help us remember how bewildering it once was, and that things truly DO get better over time. Be well, you long-hauler, you, Léna Oh darn Lena,I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader? I knew we had a moderator, but didn't know who it was? !!!! From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking... Message List Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking... Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop). Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest Offline Send Email Mon Jan 11, 2010 9:43 pm Show Message Option Guyot Léna lenasquest Offline Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Hi Malinda,Thanks for your kind words about the group... You know this group is not just for Lymies, but also for those who are here because of a loved one, so you are very much a member just like everyone else... :-) What your son is feeling by not wanting to be with others is really very common... When we feel so lousy, it can be tough to socialize with healthy folks loaded with energy... BUT, the very best thing for your son is to get him into social situations as often as possible and when he really isn't feeling terrible... Really, we all do need other people and isolation is not healthy for any Lymie... I make it a point to meet new people when possible and to be with others whenever I can. Many times I have told other Lymies the importance of getting back to work just to be in daily social situations... The more we are with others, the more " normal " life feels for us... I don't know how young your son is, but now younger folks have stronger immune systems and usually smaller bacterial loads, so hopefully one day he will walk away from this disease and have a normal life... The fact you are a Mom who is here on his behalf makes him one fortunate kid.... :-) The more we learn from each other about Lyme, the greater the chances we will improve, get healthier and hopefully one day get well... Stay strong,Jim I've been thinking... Message List Reply | Forward Message #7618 of 7818 < Prev | Next > Re: I've been thinking... Just a little note from one of the not so chit-chatty members(not even a lymie myself). Although I do not get involved too much with the non-lyme conversations, I want to let all you guys know how honored I feel to be a part of this group. Whenever I am desperate for any info for the needs of my son(who does have lyme), you guys are right there with very helpful advice and insights. Thank you from the bottom of my heart. It is wonderful to be able to witness you guys supporting each other and being able to communicate with each other, others who hurt where you hurt. Is that not healing in itself? From my son, I know one of the syptoms of lymes can be just no desire to be with people...too much stress. I think it is great you guys can have fun communicating in this way. Although I do not take the time to read most of the chit chat, I feel a sense of joy when I see you guys are feeling well enough, or simply just choosing to have some fun dispite your many trials. Thanks too for your love and concern for all members. Althoough I do not post often, I love you all and my prayers are with you, Malinda > > I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. > > In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. > > I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. > > I of course still boast we've got the best group on the net! > > Thane > Tue Jan 12, 2010 8:16 am Show Message Option " malindabross " malindabross Offline Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Thane you are too kind! I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that > > includes more personal off topic discussions and less about lyme. So I wanted > > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both. > > > > > > In a group that is mostly lyme information focused there seems to be higher > > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to > > talk about many things non lyme related we find more emotional support, which is > > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have > > always wanted our group to be a place where sick new members can find informed > > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed > > that we get very few new members asking questions anymore. And that to me is a > > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the > > very best lyme discussion. > > > > > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it > > staying the smaller closer nit group we have now that enjoys the freedom of > > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the > > discussion. > > > > > > I of course still boast we've got the best group on the net! > > > > > > Thane > > > > > > > > > > > > > Tue Jan 12, 2010 8:16 am > > > > Show Message Option > > > > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > > > Quote Link to comment Share on other sites More sharing options...
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