posted
I too am surprised by this. I do hope BettyG comes back. I will miss her.
Posts: 581 | From CT | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Betty has asked me to say that she "will never return." She does not think the matter was handled fairly at all (by two of the many moderators) and that her concerns were not heard. Nor do I.
She was told by one moderator that they just didn't even want to hear another word out of her and she could not even point out problems with some of the posts that attacked her.
I followed the insults and bashing (and Betty shared emails for advice). I don't feel like she was treated fairly, either. Some of the insults and bashing was harsh (and only some removed) but those were not the people who got banned. Instead, it was the person who just didn't want to take snide remarks anymore and she raised her voice, making it appear as if she was the problem. She was pointing out the problem and got swallowed by it. The trouble makers had an uncanny way of wiggling out of it.
Enough said.
-----
SixGoofyKids, I know you are working hard and I don't know how much of this you saw as I can't assume the moderators all confer. Regardless, this is not about anything you have said or done. I appreciate your work here. I do home LymeNet grows in professionalism.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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You can always come visit us at LymeLand any time ya want. It's quiet and very peace loving.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Thanks, Keebler. I saw it all. There are two sides to everything, and mistakes made on both sides. It also came at a bad time ... with the new mods and all.
I hope she reconsiders once everything cools off.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I stil think BettyG will be back. Lymenet's the biggest stage in the Lyme world and she's the biggest Lyme advocate. Time heals wounds.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Keebler: - Betty has asked me to say that she "will never return." She does not think the matter was handled fairly at all (by two of the many moderators) and that her concerns were not heard. Nor do I.
I just wanted to clarify that by two sides to every story, I was referring to this part of your post when I said that.
I know you read the emails regarding the one issue. Also, you are free to pass on information about what happened from Betty's side. On the other hand, I can't tell the story from our side and destroy people's confidence in myself and the other moderators that we have discretion in keeping private issues private.
Even though there were emails you have read, you may not have read every correspondence, we don't know, and it doesn't matter. I am sure you didn't read the emails we received from other parties that Betty never saw. We were "moderating" and trying our best to be fair to all involved. Betty chose first to distance herself from the board, we agreed, especially when she took her grievances public.
I just want to be sure that people understand, the mods aren't perfect, we're just one of us, just one of the board members (sorry to burst some of your bubbles, some of you probably thought you were perfect, LOL!) and we're doing the best we can. It's a difficult job. Many of us are also dealing with illness, so get frustrated at times, just like you do.
In the end, there were differences, as you said. Everyone on every side thinks they were right. Everyone needs a break from the discussions, and that's what we're doing. Betty was not permanently banned. She needed a break and so did we. That's all. We've all been there in our own personal lives. Time to simmer down so we can discuss more clearly. That's all.
I'm sorry Betty got hurt. I can't really tell more about the whole story. I'm glad you're there for her and I hope that you can help her to calm down about it so she will come back in the future. She was a great asset to the board, gave many hours, and all of us would hate to lose her.
I hope everyone has a Happy Thanksgiving. I also hope this discussion can be put to rest .... we've had the answer to the original question. Thanks to you all for keeping within certain parameters so that we didn't need to edit or delete ... honestly, it's not as fun as seek thinks it sounds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I did read what happened and I think the wrong person left lymenet.
Betty was very frustrated and was only trying to defend herself and ask for fairness.
What happened to her wasn't fair and it saddens me. I'm afraid she won't come back....
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by joalo: What happened to her wasn't fair and it saddens me. I'm afraid she won't come back....
We weren't done negotiating .... she left ... we knew we had not reached an agreement between all parties
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Thanks Keebler for being so articulate and speaking up for Betty when she couldn't. You are a true friend.
As much as I would like to see her return, it would be like returning to an abusive spouse and I think she knows that the attacks could come again. She is a very wise woman. She knows she deserves better and I wholeheartedly agree.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Betty has asked me to say that she "will never return."
If I had a nickel for every time I've said that ... oh my!
Or a nickel for each time I've heard others say that...
And what I've learned after I exploded and said that is...
The problem wasn't with the members or the moderators... although at the time you couldn't convince me of that .....
Heck, a whole post of mine was deleted just last week by a moderator (you suck it up and get use to it and try not to do it again)....
Anyhow.. it wasn't them that was the problem.....
It was me.
I've learned that although I may THINK I am right and think that I'm right very strongly and sincerely ... sometimes I'm not.
And.. what the moderators say is the final word. No matter what, it's their baby and they are the boss.
I also figured out when things went bad what I needed was a time out to reflect ... and I've learned to take it. It does help.
I hope once BG has some time to think and gets some rest she will come back and be with her friends.
BTW- If BG has a desk top link to this site that she is using ... tell her to remove it and instead have her go to google and type in LymeNet... and go to the site that way.
That should allow her to see the comments and navigate the site if she can't already.
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Thanks sixgoofykids for all of your effort and for being the "voice of reason". We appreciate you taking the time to explain things to us.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
good heavens, i'm glad i don't say i'm leaving!!!! LOL......
and my posts are ALWAYS within polite boundaries... uh huh....
besides ya'll know if you're mean to me, i'll cry...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My point was not that all the oldtimers I mentioned were banned, just that they left and had previously provided help to newbies. Having been on lymenet for ten years, when other oldtimers leave, I feel it personally.
The other thing is that ticks bite all different kinds of people, and when they come here, they bring a lot of different personalities. Plus, chronic illness, sometimes brain problems that affect behavior, and all the terrible problems lymies have in getting treatment....well it has got to show up sometime in anger and other destructive emotions. This is a website occupied by desperate sick people, and a few who are now better but have stuck around to help, out of the kindness of their hearts.
I have sometimes decided to write off lymenet, because it is repetitious and my situation seems unsolvable. But it is difficult to get support anywhere else. So, I am still here.
Posts: 8430 | From Not available | Registered: Oct 2000
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Having never been banned,,,but info from others is they CANT read or come here at all when banned.
I thought there IP addy was blocked from accessing the site at all.
I read that last post of Bettys and didnt think it sounded like her at all,,,she was indeed stressed.
I said to myself,this post wont stay long,,,it didnt.
there was some bashing going on there,,at least accusing nature remarks
as to some of the old timers like me,,,some have died,,,like Joe Ham passed away a while back,,,if your wondering.
some have left voluntarily, some not,,,may they all find peace!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Doesn't make sense that she can't get to lymenet.. maybe Tincup has the answer there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i thought you can re-register using another name.
i'm really ignorant about these things, but when my computer crashed i just logged on differently when i got it working.
hmm, unless there's someway somebody can block your id thingy from getting access to it.
???
sounds like she needs a long break tho. it maybe good for her. you cannot put your entire life and soul into this board. at some point you have to crash and maybe this is what happened to her.
saw it at work a lot.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I don't know what has gone on in this situation, and I haven't been involved in any of it in any way, but I do want to say that sometimes it's good to have change in viewpoint.
I began visiting this site when I was extremely ill with multiple rashes and neurological issues. I found it difficult to write coherently, but with effort, I wrote a post. I immediately got an email telling me to break the lines up and instructions for doing that (which at that time I couldn't even begin to follow) - I know people are effected differently, but I had extreme neurological issues (including Bell's Palsy,) and writing anything was difficult. In addition, in my case, breaking up the print into two lines at a time made it unreadable to me (once I'd get to the end of a line I couldn't track it if there wasn't anything there and couldn't skip lines - I'd lose the thread).
I felt as though I couldn't post at this site without getting criticized for the format and felt unappreciated when I made the huge effort to post and got a slap on the wrist and instructions to modify it (so that people with neurological issues could read it - I had neurological issues and couldn't read print with the lines broken up - there didn't seem to be any recognition that neurological problems can effect people differently.)
While I don't wish anyone to be hurt, and I'm sure that Betty G. did a lot of good, I think the site can benefit from a change in viewpoint and from realizing that it's important to let people who are having enough problems expressing themselves do it in their own way. I am much better at this point (although not problem free) and can deal with all of this better than I could initially. I have gotten valuable links etc. from this site,and a lot of information so I've appreciated it, but I will never forget how disconcerting that email was.
I hope to hear whether or not anyone else shares these feelings and had this experience. I know a lot of people have been helped, but I wonder how many people wandered away from this site because, of all things, criticism of the format and line spacing they used to post heartfelt problems. I am hoping that the moderators will think about this. I'm assuming that the emails that Betty G. sent out re: post format were approved by the moderators but I think it would be good to reconsider that policy.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by EllieP50: I'm assuming that the emails that Betty G. sent out re: post format were approved by the moderators but I think it would be good to reconsider that policy.
No, PM's, whether they be doctor list or instructions to break up a post are done privately, they do not get moderator approval or disapproval.
I'm glad you've made so much progress.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
quote: I hope to hear whether or not anyone else shares these feelings and had this experience. I know a lot of people have been helped, but I wonder how many people wandered away from this site because, of all things, criticism of the format and line spacing they used to post heartfelt problems. I am hoping that the moderators will think about this. I'm assuming that the emails that Betty G. sent out re: post format were approved by the moderators but I think it would be good to reconsider that policy.
Your hoping to hear if anyone else shares your feelings. I do and had the same experience and tried to express that a few times in the past. Your not alone that is for sure.
I think the moderators will and are thinking about this subject but in the past there were no changes to this.
Your last comment about assuming moderators approve the emails and format requests etc. Well that is not true from what I heard. I think the requests were just from this person who felt this way and not directed by moderators. I am sure it was not something that was outwardly intended to affect people negatively, but I know it did so for many and many times over.
I feel that it does and will make a big difference, without those requests, for new people and for people in distress to express themselves without fear of that slap on the wrist. The problem was it did not feel like a request based on how it was written. Sadly just talking about this and asking for things to be said differently caused a lot of problems and was taken personally when it was not.
It was to benefit exactly those people like you and I and many others who experienced the exact same thing.
Sometimes its hard to see the other side of things and esp when your ego is hurt. We got to keep an open mind. And as someone above posted. There are times when it is Us who is the problem even when we do not want to see it. I have gone through a similar experience.
We are all human.. and we are part of the problem and should be part of the solution both..
I hope your post is heard as well.. I appreciate your honesty and your comments about this that will help others coming through this forum
Blessings...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
When I rec'd the same message, I didn't take it as a criticism. I don't think it was meant to be. I think the emphasis is on how You felt.
I, myself, with the neuro symptoms more advanced later on could appreciate when ppl broke up the paragraphs.
otherwise, I still can't manage to read. Which means that I could lose out or that I can't then share and someone else may lose out.
I remember someone, maybe her, asking me to use tinyurl to reduce the size of a link as it was making the thread incredibly Wide.
and for the life of me, I tried to follow the instructions that day--
couldn't manage coz of my severe cognitive hurdles. And I just stated that I was sorry, that I was not in a cognitive space to handle learning how to do that now.
On any given day, I wouldn't even have replied to the request because of lack of energy.
I eventually did figure it out one day. when I remembered to.
So, if you can't manage, you can't manage.
I dunno. I just see it as etiquette is in place for a reason. different forums is like visiting a different culture.
You want to know the customs when visiting other countries to make yourself understood by the natives and make things easier for yourself too?
I realize some of us have psych and anxiety issues so something like could be perceived as pressure...etc...
Different take.
And if things change, and folks on Lymenet do start posting in whatever format they wish, I doubt I'd be able to continue to use it as a resource. Unfortunately.
The moving icons are difficult enough to contend with some days.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
The compromise we reached regarding the format issue, because for many of us we cannot read unless it's broken up, is that there is now a sticky in seeking doctors.
If a new poster does not see it, someone can post or PM referring them there - something like, "I'm sorry, due to neuro-Lyme I cannot read your post. Please see this thread (link) for instructions on posting that make it easier for us neuro-Lymies to read."
It is information that needs to go to new members in order for them to get answers to their questions, but at the same time, we don't want to scare away new members, so we came up with a consistent way to pass on the information.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
cool. good idea...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Thanks. These are the ideas and compromises we have been working on.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Six -- I just spent 45 minutes writing a detailed message to you -- and your box is full and now my message has disappeared.
UGH!!!
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sorry, it fills up so fast these days! I'll take care of it now.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Not a problem. I'll rewrite the message when I get more time. I know you are busy.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
One thing we all need to remember is that most of us are ill and have incredible ups and downs.
It is amazing to me that people here manage to express themselves well and acurately and that others of us manage to respond in a helpful way.
People post here around the clock, often in the middle of a painful night, or in a foggy-minded afternoon. And, if you are like me, often forget that we posted anything at all!
We are all amazing. Many have taken offense when none was intended, or completely mis-read what the poster said was trying to get answered, and yet most of us remain and try to help.
The moderators have impossibly difficult work to do and most of them while they are ill as well! We should be grateful for them.
I hope Betty gets some rest and some more sleep - she was one who posted all night.She needs and deserves it.
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
there seems to be a great issue of respect on this forum. many if not all oldies have left due to nasty responses from new members. there have been at least 20 members with much info and help that have left due to the attitude of others. i myself is one. i try to give a moderate response to a question and get blasted for my views. i still answer some questions ,but the ones i know i will get abused i pass on by, which is not good ,since the other side of the answer should and must be told.
this has been going on from at least a year and it is very difficult to stay here and help ,when people blast you for the facts the you give.
as far as i know all of us are semi healthy and still helping from afar. my research and treatment have helped many. my collection and distribution of money for the needy is still going on. and yes i DON'T NEED TO BE HERE. I AM LYME FREE AND IN REMISSION FOR NOW 4 YEARS. so these gestures and abuses i tolerate so that i may help others that WANT MY HELP. I WILL ALWAYS ANSWER, BUT I MAY NOT POST ANY LONGER. I HAVE NOT BEEN BANNED FROM ANY SITE BUT HAVE LEFT VOLUNTARILY.
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
DocDave -- Losing you is a huge loss to Lymenet. You have been missed.
Losing Betty is a huge loss also. I am hoping that the circumstances can be right, at some point, that she will feel comfortable returning. Only time and attitudes will tell.
Thanks for all the beautiful advice, care and concern that you have given to people.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you are blasted, please report the post. I am also in remission so no longer read all the posts that are made every day. If you see something and wonder why it's "allowed", it's probably that we haven't seen it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SGK,
I know you are doing the best you can, but this issue involves other moderators - my note is not written in reply to yours but I've just finished my work here. I was not going to say anything but since StymieLymie said what he did, it may be of interest to know that he's right. People who supply good information have left and are still leaving.
-----
The point is that several of those who have bashed repeatedly, remain. They will find new targets. No one is safe. The attitude will go on. It was the person being verbally abused that was banned, not the abusers.
I can't be a part of such an organization that allows such unfairness and veiled abuse.
It has taken me many days but I have just finished deleting all threads that I started. However, two of my main sources of interest can still be found by searching for porphyria and for many of the inner ear issues such as tinnitus and other terms. I leave links there as a gift to those yet to come along.
As for why I deleted past threads which often contained extensive links and abstracts - in good conscience, I could not leave the body of my work with a group that I would not want to be associated with due to the way people are treated by its own members.
I have not been banned but leave voluntarily. I've received a bit of bashing for the way I post or the extent of my research - wanting people to have what they need to proceed. I could deal with that but it was the way Betty was treated (repeatedly, over time) that led me to this decision.
I am not well - far from it - yet, from my own search I've much research to share in 3 or 4 particular areas, it takes everything I have to write. It's just too stressful of an ordeal to remain in this opinionated clique that has blossomed. It makes me sicker.
I used to be a professor of journalism. I used to love to research, teach and share the wonder of learning. I hate that I have had to research to save my own life since there are no LLMDs in my state. Still, for a split second here, I enjoyed sharing with others some of what I've found to be of value - to make their search for health - for life - easier. I do hope it helped. -
[ 11-29-2009, 02:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I just wanted you to know that you helped me prepare for my tooth extraction earlier this month. I took your suggested abx Clindamyacin to my LLMD and he wholeheartedly agreed.
Thanks, I really appreciated the help.
Posts: 374 | From United States | Registered: Nov 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Keebler -- We have lost Betty, and now it seems that we have lost you too. Such sadness.
I am beginning to feel that soon I will be the only old timer left. It will be me against the abusers. But I can't in good conscience walk away yet.
God only knows who the next target will be. It could be me. I've chosen to turn my back on the abusers rather than be sucked in by their nastiness. But who knows how long I can keep doing that.
It may be just a matter of time before I too feel the need to throw in the towel. Time will tell.
Hugs to you and Betty both. We miss you.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Keebler, I'm sorry to see you go. Truly, we want no abuse on here. Like I asked, please report it.
There is more to the story about Betty being temporarily banned. I am not going to divulge the whole story. You all are missing parts of it though (even the ones who have many of the emails).
You are welcome back anytime Keebler. I hope after a break you decide to return.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm going to add a comment here from the perspective of someone who is "outside of the loop."
While I don't deny that abuse occurs between members, I don't see it. Either the moderators are removing it before I see it, or it is happening behind the scenes such as through PM and/or email.
I'm not even sure what is meant by "abuse" as the term is being used here.
I've seen posts with conflicting opinions, but I accept that there is no resolution when people disagree at a fundamental level. That's when it's time to live and let live.
I know first hand how being sick and not feeling like myself makes me overly sensitive to criticism. And again I know the issues causing people to leave could be behind the scenes. Regardless, it's possible that people could let things cool down before taking irreversible steps to distance themselves.
Support is crucial during recovery and I'm sure it's a passion for some who are healed. Support and ideas come in different shapes and forms and there is no one-size-fits-all answer to most questions. I treat this site like a buffet: I take what I like and skip what doesn't appeal to me.
Wishing everyone good health.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Something that I was taught and continue to pass on to others:
"No matter how much you think that you know about someone, or about a situation, and no matter how justified you are in supposing that you know all there is to know, there is always and inevitably more to the story."
We need to feel compassion for everyone involved. And I try. I am just sad that this has happened.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
So Betty WAS banned. I thought you said she just left for a break of her own free will?
quote:Originally posted by sixgoofykids: Keebler, I'm sorry to see you go. Truly, we want no abuse on here. Like I asked, please report it.
There is more to the story about Betty being temporarily banned. I am not going to divulge the whole story. You all are missing parts of it though (even the ones who have many of the emails).
You are welcome back anytime Keebler. I hope after a break you decide to return.
Posts: 365 | From Sylvania | Registered: Aug 2008
| IP: Logged |
quote:Originally posted by sixgoofykids: It is our understanding that Bettyg is taking a break from the board. We all appreciate all that she did, and if she needs a break, she certainly deserves one. I think all of us who have been here any length of time have taken a break at one point or another.
Thank you for your concern, Tracy.
Posts: 365 | From Sylvania | Registered: Aug 2008
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quote:I am beginning to feel that soon I will be the only old timer left. It will be me against the abusers. But I can't in good conscience walk away yet.
Lou,
There are a lot of "old timers left". I've been here since 2001. I don't get involved in the drama.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I can't believe you deleted all the threads Keebler. Not good IMO. For every bad person, there are 20 good ones. You doing that may have hurt others who desperately needed it. I'm sorry you felt you needed to do something that drastic. That action just seems wrong.
Maybe I should just leave too. Really, don't take it all so personal. It's the Internet. it blows my mind because I've read nothing but peopel praising your efforts since I've been here. Doesn't that mean anything to you?
What should concern everyone so much more is these members of Lymenet Europe posting real people's names, keeping blogs about members here, and other outright unbelievable actions. THIS makes me not want to post. While I don't agree with some stuff here, I am in shock members there actually review every action on here to turn into gossip there. BEWARE WHAT YOU ALL WRITE because you're being watched like hawks. That is serious IMO. Every post you make, every comment, thought all is recorded there. When a thread vanishes here, it's saved forever there.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by JR: So Betty WAS banned. I thought you said she just left for a break of her own free will?
That is how it started. It is true that she left of her own free will. She cannot post at this time, as has been discussed on this thread, but that was after she left ... after she wrote her post that had to be removed. We were still in dialogue with her when she decided to leave and we do want her to come back after a cooling off period.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by lou4656: "No matter how much you think that you know about someone, or about a situation, and no matter how justified you are in supposing that you know all there is to know, there is always and inevitably more to the story."
Very, very good! And very true in this case! Thank you!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Seek, I agree, this is a PUBLIC message board. You should only write information here that you want PUBLIC.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I know Six, but others may not be aware how cruel it gets. I was quite shocked at stuff I read lately and I'm not thin skinned.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I haven't seen anything shocking on here lately but then I'm not here all the time. But I wouldn't be surprised since most of us are very ill, irritable and an explosion waiting to happen.
From what I can tell, those that have been here a long time and have gotten better tend to move on eventually anyway. It makes sense. Some stay and offer their knowledge, while others have other callings and other directions to go in.
Everything happens for a reason, so maybe it was just time for some ppl to move on. I am sure some of us that have been here a year or two will also have our time to move on too in the future. Life goes on!
I hope that those that have left us find health and happiness. Maybe this is where a new journey begins for them.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I am really sorry to read of this latest exodus, that of Keebler, who has been so helpful to everyone here.
And Stymie, and Betty -
I think any bashing, meanness, cliques etc need to end! People come here for help. We shouldn't be losing our helpers, who also can use help too, from time to time.
I was actually surprised to read that Stymie thought his information had been attacked. It's my impression that he has been our Lyme dentist-in-residence and extremely medically knowledgeable!
Are we in need of another process to handle grievances here, so we don't have to lose longtime members every time there's something going on that bothers people?
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I have been a member for several years now and post rarely. I feel that I have learned much, but can pick the information that I need and move on. I truly believe that spending too much time on this board is not healthy. Especially when you have to deal with the politics of this disease.
Since this subject is taking place, I would like to mention that many of the "old timers" are very well intended, but some, come off rather harsh. I also had the experience with Betty telling me to break up my sentences so a lymie can read them. While I will be the first to state, I do not believe I was as sick as some, I was in a terrible way when I first found Lymenet. That initial encounter just upset me more. As a newbie, I was seeking help, not a berating incident over something that would be considered nonsense elsewhere. We are not speaking face to face and this is a public forum, but there are ways to speak in a more polite and less accusatory manner. I was totally unaware that this was an issue when I first arrived and it didn't bode well for an initial impression. If the intention of this site is too provide others with information and get our word out, doing it in that way is definetly not successful.
As I mentioned above, I post rarely, but look often. I will search for whatever my question is and get out of here. That approach has served me well and allowed me to stay out of the drama that seems to hover around here. I know many of the people here have extensive experience and divulge their knowledge when they can and I greatly appreciate that. Unfortunately, while I do believe Betty has a great heart and was well intentioned, I do believe that she expected full recognition for what she did and expected to never be questioned. That included when she sent her responses regarding the spacing. She could say whatever she wanted and expected to get away with it, yet she would never stand to be spoken to that way. At least that is how I saw it. I saw many of her uffda's in response to some.
As an example, many old timers will remember when she was asked to redo the newbies forum. I believe initially, she was upset that she was asked to do something over. For someone who requested people to break up their spacing, it was almost inconceivable to think that someone with neuro lyme could read the newbies column. I for one, could not. After she did it, she spoke of how it took her days to do it.
I know what a great advocate she is for the Lyme community, but when the same story is posted on every comments section for every article written on the internet regarding Lyme, it loses its sting. If I was just a person with an interest in Lyme but who was not ill and read several articles and saw the same story of Lyme for 34.5 years from my Christmas tree, I am sorry, it loses its validity. No matter what article you read it was the same story over and over. Many of you know what I mean. I would look something up and see that people posted regarding some type of symptom. There would be a response from Betty stating she had it and it was caused by her XYZ affliction. Again, this does not help the Lyme validity factor when we have doctors who are looking at some of these posts. I know many others who have PM'd me over the years and have had the same feelings, but have never spoke on it. They had no reason too because they took what they wanted and left. We didn't stay and look for the drama.
I am not trying to be harsh and have never spoken of this before, but I believe it is the time to mention this now. With all of the attention Lyme is getting in the media the last year or so, we need to show some validity that people are suffering, not suffering to gain attention. All of this infighting just makes us look like the bunch of wackos that the IDSA says we are. We need to stand together and put a face on this horrible disease and show how many of us are suffering and that we are not going away.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its all disappointing.
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