Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Our medical care is being jeopardised so I have to ask...
Why do we let people in the Lyme community attack our advocates?
Isn't that like shooting ourselves in the foot?
Common sense dictates that when we are fighting for our lives and those of our children, we don't...
1.) Aim the enemy's guns at ourselves.
2.) High tail it out of town or abandon our advocates when the going gets rough.
3.) Throw rocks at those who are fighting our battles for us.
Ask yourself, where would YOU be if someone hadn't stood up to the ugly mobs.... and in spite of the risks to themselves... taken that first step needed to save our lives and advance our cause?
I am not only concerned, I am dreadfully disappointed that a few people, who have benefited from the generous help that was offered by long time advocates in the Lyme community over the years...
Are now trying to remove leaders from their posts because they don't ``like them'', or because of what was printed in a magazine's smear article that has come and gone, or because they don't agree with some of the things the leaders are trying to accomplish (without knowing ALL the facts).
And they are doing it suposedly to HELP patients???
I don't think so.
Our dedicated leaders have recently been given an ultimatum to ship out or be shipped out by a handful of people (9) claiming ironically to be Lyme disease SUPPORT GROUP leaders and ACTIVISTS from AZ, MI, TX, CT, FL, SC, TN, PA.
If this is allowed to happen.. and the ones who are doing the most to help us are given the boot... who will be next on the list?
I have to ask... is it fair to turn our backs on our advocates, or worse yet, stab them in the back and claim that it is being done in the best interest of the patients?
HELLO!!!!
WHERE is the team work we so desperately need?
WHERE is the loyalty and support these advocates should have?
WHERE is the thought that should have gone into this action before trying to destroy ALL of our chances to make progress and be united in our efforts?
WHERE is the brain that should have told them they are doing EXACTLY what the enemy wants us to do.. which is to be divided, then fall and then fail?
WHERE is the sense in this action? WHERE is the reasoning?
Who is going to take the lead now.. people who think this is a SMART idea???
Heaven help us all. Ya know...
If this is supposed to be a helpful action, just get the gun now.. load.. and take aim at your foot.
I am sure these SUPPORT GROUP leaders and advocates will gladly stop by and pull the trigger for you.
Beverly
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posted
Posts: 6641 | From Michigan | Registered: Jun 2001
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trueblue
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posted
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Boomerang
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posted
What is going on? Guess I need to read more threads.........
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kelmo
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posted
Why is this in medical...
Posts: 2903 | From AZ | Registered: Feb 2006
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bettyg
Unregistered
posted
tincup,
i'm totally lost on this one! i'm unaware of anything that i'm reading about.
where is there a link what will explain to us having been off the board awhile and not up to snuff with the latest goings on?
thank you for enlightening me as i'm dumbfounded on this one.
or to anyone else involved in whatever TC is talking about, please speak up and explain in detail what is going on??
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posted
So what is anyone doing that's wrong? What's the problem? Doesn't everyone work pretty hard to get somewhere with education/publicity/research/fundraising, whatever?
I think everyone should be advocating for all the help we can get. We don't have to be divisive.
Posts: 13171 | From San Francisco | Registered: May 2006
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randibear
Honored Contributor (10K+ posts)
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posted
Huh?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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treepatrol
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Member # 4117
posted
Huh???
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
MagicAcorn
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posted
I believe this is just to let those who think they are getting over, know that they are not.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Just to set the record straight. The AZLDA is not a part of this effort. The people in Arizona that you are referring to are not support group leaders. They are self appointed advocates who may take phone calls but they don't run a support group. And they are no longer in the AZLDA group. I want this perfectly clear. They do not represent the AZLDA.
As of right now, I am the one who runs a support group here in Arizona. We currently have on the average 12 people per meeting, typically having at least one new person attending per month.
We also have 3 people taking phone calls for support, education and physician referral. And we are in the process of putting a board together to become non-profit.
I am personally very thankful to the national group for what they are doing. They have an enormous task a head of them, with not enough manpower to accomplish it.
Except for protecting the Arizona members of the online group and support group meeting from their presence, I really feel that there is not much more I should or can do about these individuals. I cannot control their behavior. But I can control mine, focusing on the goal. That goal being to support patients and families, education and advocacy for lyme patients. And when time and energy permits support the national group's efforts by writing, calling and encouraging.
Best regards, Karen Genest Support group leader of AZLDA www.azlyme.org (under construction)
PS I do believe this belongs under Activism.
Posts: 1844 | From Maine | Registered: Jun 2004
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trueblue
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posted
Thank you kgg, I had to wonder if it's all broken off factions from different places.
(Except for my state which has an anti-support group. Really not nice, self centered, back stabbing, couldn't give 2 ****s about patients and has obvious financial conflicts of interest.)
Thank you for the work you are doing.
May I join Arizona's group?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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kgg
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posted
****speak up and explain in detail what is going on??****
I can only speak about the two individuals that are in Arizona. They are the woman who is the head of LEAP Arizona (Lyme Education and Awareness Program) and another woman known as LymeAngl on many Lyme boards. They do not feel that the LDA is effective (my words not theirs, to get theirs I guess you would have to contact them). LymeAngl confronted me about "crossing over" by working with a member of CALDA on a Yahoo Arizona support forum.
I am also aware of other people who feel the same way, Tincup listed the states in which they live. And the rhetoric is that it is time for new people in the leadership positions. I am unaware of what the latest action was that prompted this post from TinCup, but something must have happened.
Again, I don't believe that anyone can control these individual's behavior. What we can do is focus on our own. What can we do to support our advocates? A letter of encouragement? Willingness to write a letter or make a quick phone call? A financial contribution however small? Folding flyers? Licking envelopes? Team work! And a "CAN DO" attitude will go a long way in Lyme Advocacy.
Best, Karen
Posts: 1844 | From Maine | Registered: Jun 2004
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posted
Concerning the Lyme Disease Network of South Carolina - The people that I work with in this group have agreed that the Lyme Disease Network of South Carolina intends to stay out of controversies.
Our group is trying to educate as many as possible about Lyme and Co-infections. Where possible, we are trying to give reliable Lyme information to physicians who are willing to look at Lyme disease as a more complex illness than is believed in our state.
We also do our best to give support to those who are dealing with the problems associated with Lyme.
We are trying to build a support base in our state that will enable us to accomplish more and more as time goes on.
Wish I had more time, but I have a church group meeting here at 11:00.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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kgg
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posted
Trueblue said: May I join Arizona's group? [Wink]
All refugees welcome!
Best, Karen
Posts: 1844 | From Maine | Registered: Jun 2004
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sometimesdilly
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posted
TC-
are these folks in a position/have the strength in numbers to actually do harm?
the oldest stategy in the book is what you say- divide and conquer. but it takes 2 sides to waste energy on focusing on divisions.
if who you are referring to is a handful of malcontents - or bought off lackeys, or some combination- can they just be ignored?
if not, any suggestions for how to counter their efforts?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Greatcod
Unregistered
posted
It all sounds a bit like the Shia and the Sunnis.
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-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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kelmo
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posted
This is all just totally inappropriate...can this thread be moved? Posts: 2903 | From AZ | Registered: Feb 2006
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Tincup
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posted
Good morning..
Uh oh....
It seems I've not been able to share my opinions in a really good way. So sorry!!!
Keep in mind... I am trying to spare feelings because as you know I care very much about patients... and their feelings... and their doctors.
I am also trying to be politically correct... obviously something that has never worked in the past for ME... and I am not good at it... soooooooooooo.... to spit it out...
Letters have been sent to the head of the ONLY doctor-oriented group we have supporting us and helping us... and they are calling for .. well.. here is a quote from a post found elsewhere..
"STEP DOWN BEFORE THE BOSTON EVENT SCHEDULE GOES OUT STEP DOWN BEFORE THE BOSTON EVENT SCHEDULE GOES OUT STEP DOWN BEFORE THE BOSTON EVENT SCHEDULE GOES OUT"
My feeling is that our advocates.. our ONLY advocates... deserve a lot of credit for the years they have stood behind us.. against all odds... and should NOT to be tossed out on their ear because the bullies are getting nasty in their random attacks.
If you follow the line of thinking coming from this handful of people .. which would be to toss anyone out who the ducks don't like or might at some point attack...
We would have to design a HUGE new alligator pit that we (our doctors and ourselves) can all jump into. Because... not ONE of us is beyond attack from a variety of sources in this Lyme war.
And I honestly don't feel killing off our leaders will stop the attacks.. or make us more credible.. or make us any stronger in anyone's eyes.
I am not sure what your post means but I did notice that my state was listed having something to do with support group leaders.
There is a supposed support group in my area but it is totally nonfunctional, there are no meetings and the "leader" is not in touch with anyone I know with Lyme locally.
If there is something I can do to help change anything negative going on I will certainly try. I guess I am a bit confused, but I do know that if there is an issue bothering you, it must be important. If you are trying to tell us something without being able to reveal very much, I undertand that too.
Again, I'm willing to be helpful, whatever shape that takes.
sometimesdilly
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posted
TC -
I'd be happy to sign a letter to the leader under attack, stating my support for him and for the group, and my personal regret that his ledaership is being called into question. Would that be helpful?
Csve- i saw a thread yesterday that must have been connected with what is being mentioned here. i personally would disagree with inviting this handful of folks to a "debate'.
From what I saw the attack was either extremely uninformed or it was deliberately malicious and unforgivably personalized.
Let them poison other waters if they must.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
To try to address some of your questions...
Kelmo- I see you are uncomfortable with this post. Sorry. I do notice you are from AZ.. one of the states represented in these letters. Maybe check with folks there and express your concerns if you don't agree with their actions.
BettyG- I would provide links but most of the posts were removed by moderators of various groups when this kind of trash was spewed all over. If my count is correct.. some of these folks have tried getting away with this "internal smear campaign" on at least 5-6 groups and have been kicked off all of them for breaking rules.. and/or have had their posts deleted.
I hope I have better addressed your questions? I'm trying!!!
Robin123- You are right. Most folks are trying to help, bless their hearts. But there are a few who feel the way to get themselves help is to first trash those who are working to help us and then eliminate them so they can take over and run the show. So sad. I would much rather they pitch in to help than constantly pound others on their head for trying.
randibear and Tree... any better?
Hey Squirrel.. hope you are doing better after surgery.. and BettyG too.
And yes.. you are right. Things need to be brought out in the light because these letters make it look as if there are a lot of folks in a lot of states that feel this way. I am horrified that ANY of our doctors would think we would launch a personal attack on them and demand they be pushed aside... rather than supported as they have supported us over the years.
I also believe in my heart of hearts that a couple of these people simply are being fed only one side of the story... and although they THINK they have all the back up and documentation they need.. their research was stiffled before being completed (actually I KNOW that is the case- fact).
Unfortunately.. I spoke with some of them but I guess my explanations (what I could get out) were not in tune with what they have been force fed and made to believe... so their ears and minds.. in my opinion.. weren't open at that point for listening to the other side of the story.
Yo Cave.. any better?
kgg... I thank you for coming here and getting that straight. I hope others do the same. But do know.. these people have made it appear as if they could be representing a lot of people and/or are covering state wide areas... which I KNOW not to be true.
But the organization being attacked doesn't know how many feel this way... and the other innocent patients in these states may not know they may be looked at as being responsible for these attacks on our doctors.
And yes.. I can also post this in activism.. but it directly afffects our medical care and our doctors... ones we have and ones we may no longer have if this keeps up.
True.. yes.. it is very misleading in my opinion. Can you imagine being a doctor who has helped so many while being under attack from ducks galore.. and who then has to be stabbed in the back by the very patients they are trying to help?
cbb- Your group has been incredible and has done some very good work for many years. I've always admired you and praised your efforts.. you know that. But do check on your members.. especially the one that I have dearly cared about for years. I happen to KNOW they don't have all the facts... unfortunately.
kelmo
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Member # 8797
posted
Are you saying that there are outside forces scheming to hurt the support groups? I thought you were blaming our local support group leaders.
I am on the board of our local support group, and haven't felt under attack by anyone.
Uncomfortable? Yes. Why don't you talk to the offending members directly? I just saw AZ was under attack and I am very proud of our support group. I think our leader is very much a mother hen, and I trust her judgment.
kam
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Member # 3410
posted
Thanks Karen for clarifying things from AZ.
One thing I have been impressed with since having some contact with you is that you are wise with your words and considerate.
The caring comes through first.
When I first came down with lyme, I noticed that one of our biggest problems was a disconnect for lack of a better way of putting it.
I have seen things improve.
But, I related it to the Deaf Community. The Deaf fight amongst themselves a lot.
( it has been a long time now since I have been involved with the Deaf Community so don't know how things are now)
It was not until they joined a stronger disability group that things started happening with their needs.
As with lyme, they fought over how things should be done, etc.
When they joined the all inclusive group...things worked out better.
It is great to see LDA, ILADS, and now the Columbia Research Center taking the lead.
It would be great if each state could support their LDA leader so they could attend the next LDA/ILADS Conference.
I think this would help with matters, too.
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kgg
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posted
Tincup, I am having a hard time understanding who is being attacked the physician group or our national group? Sorry for being thick but that is the way the ole brain cells are firing today.
Could you please clarify?
Best, Karen
Posts: 1844 | From Maine | Registered: Jun 2004
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Tincup
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posted
Woah.. you all are WAY too fast for me.
That sounds MUCH better than saying I am too slow to keep up! HA!
Several more have posted and I haven't addressed all the others yet.. but I am trying.
One of the problems here is I personally know a few of the folks who want our leaders shot at sunrise... and I care for them and always have. I actually didn't believe they were responsible for this mess and tried to talk to them about it to hear their side.
BUT.. my head has to look at the big picture.. and kick my heart aside for the time being.. as others are hurting because of the actions of a few. So I am kinda stuck in the middle. ````````````````````````````````````````````````
Dilly..
Good questions! You said.. "are these folks in a position/have the strength in numbers to actually do harm?"
In MY opinion.. not directly. But I likened it to the KKK tactics in where a minority of folks (3-4) move into an area and try to grab up the weaker ones to join a cause.. and only feed them part of the story.
I also should say that the way this was handled.. pretty clever by the way... it leaves the attackeee's with the impression the complainers are the voice of many.
And you all know how it feels to work hard at something.. then have someone come and punch you in the gut for your efforts. Doesn't matter if it is one person or many who are punching... it hurts all the same.
You said.. "the oldest stategy in the book is what you say- divide and conquer. but it takes 2 sides to waste energy on focusing on divisions."
Yes.. exactly.. and I can't understand why anyone in OUR Lyme war would start an internal war against those who we need to stand by.. as they have stood by us.
You said.. "if who you are referring to is a handful of malcontents - or bought off lackeys, or some combination- can they just be ignored?"
Actually.. they should be. but my point here is that for every attempt made to move our group forward.. we are having this thorn in our side and we must work around them to move ahead.
WHY can't they just work with others and stop fighting everyone else? NO.. we all won't agree on every topic.. but GEEZE! That's LIFE! They need to .. at the minimum.. be respectful and honest.. and decent.. which some of them haven't been able to even get those basics down pat.
You said.. "if not, any suggestions for how to counter their efforts?"
After years of hate and ugly.. and having to deal with it on a growing basis.. and watch others having to fend off attacks... I wish we had answers. If we say the grass is green.. they say it isn't. If we say it isn't .. they say it is.
I have been invited to join every national organization that is helping folks. I won't do it. I work with patients and doctors on different projects as I am asked to... or I pitch in whereever I can help. But even doing this I am continually "accused" of being one sided and/or for the other guy.
Soooooooooo... the same folks kicking me and others don't bother to check out information.. they just kick anyone they want at any given time till the cows come home. Senseless stupidity. So, I am looking for help as to how to fix this.
Much of this garbage goes on behind the scenes. If you could read what I see.. it would burn your eyes.. not to mention make you puke from seeing so much unfounded vulgarity and hate.
My feeling is if it isn't allowed to be kept undercover anymore and people are held responsible for their actions.. maybe they will think twice? I don't know.. but my policy will now be to tell patients and doctors what negative and ugly things are happening in hopes we can all do damage control together.
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Cave said.. "Can names or groups be named?"
Yes.. they can. And they should be.. and they very well may be. And that is something folks want to know... as I am getting emails requesting names as we speak.
BUT.. I will hold back publically sharing this info for a short while in hopes that MAYBE a couple of them will have time to research a bit more and re-think the issues and what is actually happening.. because I truly believe a couple of the people I know personally were only fed part of the story.
I think if they could and WOULD take time to see the bigger picture.. they might reconsider their actions and decide to change their minds and stand behind our doctors rather than abandon them and/or toss them aside... or follow the lead of a few really disgruntled people with other agendas.
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Greatcod and nan..
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TNJanet...
Thank you for offering to take steps to help. Good for you!!!
Yes.. your state does have a person who is part of the problem. And I KNEW there were TN folks who would NOT feel the same. That is why I am sharing this. I wish I had suggestions from others as to how to correct this problem... so if you care to think on it.. I am open to listening. Thank you again!!
``````````````````````````````````````````````` Dilly.. good idea about letter and we may want to do that. But for now I'd like to educate others to the situation.. and then once we've had time to think and get opinions.. then do something.
My goal is to get folks to work together and stop the internal wars.. so a plan of action should be in place. What do you think???
posted
TC, when you get a moment, could you please PM me the names of the Texas person or persons who need a good whuppin'... I mean, EDUCATIN'? I'm working too danged hard in this LLMD-less state to fix the Lyme climate here, and I can't let this slide!
Posts: 220 | From central TX | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
kelmo..
You said..
"Are you saying that there are outside forces scheming to hurt the support groups? I thought you were blaming our local support group leaders. I am on the board of our local support group, and haven't felt under attack by anyone."
I am saying some of our support group leaders and independent activists from those states are attacking our ONLY doctors organization.
Why don't you talk to the offending members directly?
I have with some of them that I know.. as have MANY others in an effort to end this war... and it only leads to more brutal vile attacks.
These attacks (and I am talking UGLY) often come from out of the blue and are directed to people who the attackers have never met or never even spoken to before. And after a zillion attempts to try to end this nightmare.. the attacks continue to come on a regular basis.
If you showed up to your regular volunteer job everyday and had people throwing rocks at your head... it would get a bit discouraging after a few years of that behavior.
If someone wants to complain about things not getting done the way THEY want or how they want.. maybe let up on the stone throwing long enough to let the people who ARE working..
posted
Thx, all, for clarifying. But I still don't understand what are the concerns of these other folks. And what would they do any better than all the other hard-working people here?
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Kam... good points!
You said.. "It is great to see LDA, ILADS, and now the Columbia Research Center taking the lead."
Yes.. very comforting to know that inspite of all the stones being throw at them.. they continue to move forward.
If they would stop the stone throwing.. we could have much more!
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kgg..
It isn't you with an understanding problem.. it is my way of trying to nicely word things.. which I am having trouble with. My appologies.
You said.. "... who is being attacked the physician group or our national group?"
Pretty much since day one I have experienced on/off attacks from cowards who have gone so far as to threaten my family and friends.. and myself.
I have also seen many others I try to work with be attacked on a regular basis... be it doctors, patients or support group leaders.
What this specific post is asking for is ALL the attacks stop..
And that the latest attack on our doctors be the example that shows others what is REALLY going on... in an attempt to stop it.
So yes.. not only are the doctors being hit hard.. so are the others and they have been for years.
Hope that helps!
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Hey TX Mess.. hehehe
I don't PM.. but you can email me. Just let me know who you are and what you want... so I don't forget!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin123
You slid in there while I was grabbing a boiled egg to eat. Sorry..
You said..
"But I still don't understand what are the concerns of these other folks. And what would they do any better than all the other hard-working people here?"
For years we have waited and waited for some constructive ideas or plans from this small group.. but the only thing I have seen is that they sit back and wait.. and then dig into others business ... and then attack what others are doing in an attempt to destroy it.
Sorry to have to put it that way.. but I've seen nothing at all useful or productive stemming from their actions. And I have REALLY tried!!!
And I have asked as have others.
I was told the other day, here on the board, that they were making plans to get off the porch and finally do something.. and that they had "something" in the works.
Come to find out THIS is what they were doing!!!
If their first big "helpful" project is to try to sneak letters off to our doctors group and try to get them to resign in a cloud of shame... rather than stand by them, as they have stood by us...
Well.. that is a project I can't and won't be involved in as I think it is not only disgusting but it is totally the wrong thing to do.. and is not only un-helpful.. but dangerous.
Not to mention it is BAD news for patients and other doctors in the organization who not only have to face being kicked in the head from the ducks, insurance companies, medical boards, etc.. but now they face being stabbed in the back by the patients they are trying to help.
Now that is my opinion and it only comes from what I am seeing. They may have some more constructive plans in the back ground.. but they haven't shared them with me.
If you want any more details.. you will need to contact them for answers. But be sure to wear your steel-toed boots and a hard hat when ntering that zone.. as it can get real ugly, real fast.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thanks, Tincup, I think I'm getting a "glimmer" of the big picture.
We had a local LLMD speak at our support group. All were invited, he was the only one who accepted.
At the beginning of the talk, he had a powerpoint slide, from ILADS, that read something to the affect that we need to contact our local Attorney General's Complaint Department and ask "NICELY" if they could direct us to doctors who treat Lyme disease.
The operative word is NICE. We can't be cruisaders breaking down doors demanding treatment.
Is that what you are talking about?
Posts: 2903 | From AZ | Registered: Feb 2006
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kelmo
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Member # 8797
posted
Thanks, Tincup, I think I'm getting a "glimmer" of the big picture.
We had a local LLMD speak at our support group. All were invited, he was the only one who accepted.
At the beginning of the talk, he had a powerpoint slide, from ILADS, that read something to the affect that we need to contact our local Attorney General's Complaint Department and ask "NICELY" if they could direct us to doctors who treat Lyme disease.
The operative word is NICE. We can't be cruisaders breaking down doors demanding treatment.
So, is that the fracture in opinions we have between the two groups?
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Just want to state that, as a member of the Board of Directors for TXLDA, we are NOT associated with this attack on ILADS, nor do we support it in any way!
Posts: 220 | From central TX | Registered: Jun 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Man TC, I have been off the board for almost 2 years off and on for a short hop and a skip. I am just not doing well at all since off treatment and my LLMD is not treating me that is why i have to move again..
I won a closed award which did nothing for my financial situation as we were pretty much destroyed before it was granted..
I need my disability letter for my attorny and even though I was told by my LLMD that I can not work. I have no letter and the lawyer will not represent me..
but the mess on this board and the division is still going strong..
WHAT ON EARTH DID I MISS NOW??? Anyone want to clue me in here I tried to read the post here but I still can not follow it my vision is going,plus i haev a hard time sitting for any period of time forget standing too long too...... email me or PM me..
[email protected] If you need someone to send faxes or emails to anyone let me know I will devote my time that way if it will help any cause....
I am no good with phone calls as there is too much crazy stuff going on in this house.... it has to do with three members all having lyme and I mean lyme rage... and no treatment in place.. Someday someone is going to read about us on the front page news....
Also I am still writing my auto biography on Lyme getting near a stand still but I am sure it will take off sooner i hope before i die... I will post on general about that right now before i rest..
let me know l8r
Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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Although I have no specific knowledge of the attacks, after reading the posts I know that I would like to do something to counteract whatever is going on. Any suggestions?
Every time I see my LLMD I thank him for putting himself in direct line of fire for saying what he says and doing what he does. It certainly would be easier for him to stay in the shadows, but he doesn't. He tells it like it is...and I am sure there are those out there just salivating over the opportunity to discredit him in some way.
I thought attacks would come from the "dark side". But apparently, the "dark side" has managed to brainwash some of the enlightened side to do their dirty work got for them. (if I am interpreting the posts at all close to reality)
If I am way off base, I will keep reading for more clarity. But we need to fight back for ILADS and our LLMDs.
Ann
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi TC and all,
I would like to help if I can.
The Dr. that is in question is my doc, and let me tell you the guy deserves to be stood behind and supported. I don't care what people "may" say - friends stand behind their friends strong. This is what friends do.
How exactly did we get a rogue cell? I'm sure the doc in question has broad shoulders, but really, I think what this faction is doing is backward - get ready to fight the fight - not turn tail and ask for resignations.
That said, I'm all in for what can we do to counter this? It's always so tricky to stop a ball spinning.
Perhaps the more "p"olitical ones amongst us could weigh in with ideas.
With great wishes,
canbravelyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
My concern is that the current leaders are looking to the government agencies to help us out of this mess, when it appears that these government agencies are part of the cause...part of the problem.We shouldn't even go to them for funding because they sabotage research results.They are not stupid or uneducated. It is intentional. I have been researching into biowarfare, controlled opposition groups (COGS),and efforts of our own government agencies to sabotage any progress in lyme diagnosis and treatment. In fact, they are doing their best to protect their corporate interests and ideologies.
I urge all of you (who have the energy) to google controlled oppostiion groups and to learn about their goals. Many are upset about the current leadership because activists in many states have tried to initiate legislation ( altho I am not very impressed with a citizen's input in their government and what it ends up accomplishing)and leaders who are not from those states come in and impose their will and from what I hear, end up sabotaging the legislation....without being asked.
So, I feel we need to come up with different strategies to counteract the government's coverup. Why should we go to them for help when it appears they are out to hurt us. I don't want to burst any bubbles, but the government does not love us or care about the common person. Government is now intertwined so tightly with corporations that our government is no longer what we believe it to be.
My hopeful solution is to expose what is going on. I brought up this idea at our CT Lyme Hearing meeting and the Assistant AG told me that I did have legitimate concerns but that we need to appear credible and not bring up this aspect yet...of government complicity. We can tend to that later, he said. Everyone went along with him and he placated me. I also suggest that people google the Delphi Technique which explains how governments and corporations try to give us busy work, placate us and divert us from the basic problem. They try to achieve consensus.
Achieving consensus may sound all well and good but this discourages people from giving their heartfelt opinions and from sticking to their guns.
Posts: 1176 | Registered: Oct 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Ann in CA: Thanks Tincup,
Although I have no specific knowledge of the attacks, after reading the posts I know that I would like to do something to counteract whatever is going on. Any suggestions?
I thought attacks would come from the "dark side". But apparently, the "dark side" has managed to brainwash some of the enlightened side to do their dirty work got for them. (if I am interpreting the posts at all close to reality)
If I am way off base, I will keep reading for more clarity. But we need to fight back for ILADS and our LLMDs.
Ann
Ann, I've got the same impression as you. I'm not sure I understand, much, but it doesn't look good.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I wonder if one of the ways to fight this is actually to get behind and support the politicians, like Blumenthal who seem to understand what is up with the "gig"...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
FIRST OF ALL ----from my perspective, TinCup is being very disingenuous in stating that a letter sent to Board Members of ILADS from 9 support group leaders attacks anyone. Does she just expect us to just take her word for it?
It is no secret that there are support group leaders and members of their groups that are tired of the same old tactic of ALWAYS being 'labeled' the 'enemy' by those who don't agree with them. Case in point is the recent erradication (censorship) of posts yesterday from Lymenet. Obviously, freedom of expressing your opinion on Lymenet is not tolerated?
I believe we would all agree that NO ONE has worked harder, or longer hours and helped more people with Lyme disease than support group leaders everywhere. Their passion for changing the ignorance surrounding Lyme disease and helping people with the disease is 'admirable'. Despite this the leadership continually attempts to divide these groups. One has to ask why?
We ASSUME if this letter was sent to ILADS members that the group of 9 signed and marked it 'Confidential' therefore the 'BIG' question is how did Tincup get a hold of the contents of this 'Confidential' letter ? And what is her motive in posting it?
Don't you see people....there is something very wrong here. If a 'Confidential' letter composed with good intention by advocates for Lyme, sent to ILADS hoping to prevent disasterous result in the future, winds up on Lymenet and it's contents is spun to discredit the support group leaders who wrote this letter, you have to ask yourself who is behind this?
How do we know that Tincup is not just spinning the contents of this letter? I believe everyone should have the opportunity to read this letter and decide for themselves the motive behind it.
Oviously Tincup has access to this 'Confidential' letter....so 'show us the letter' Tincup and then everyone can evaluate its contents and decide for themselves.
Rock
Posts: 9 | From NJ | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
We've had an emergency pop up and it will affect ALL of us if we don't work together to fix it.. ASAP. I am going as hard and fast as I can... as are a few others.
Will provide details on another post as soon as it is prepared.
Please make THIS the changing point.. so all of us can work together.
posted
Rocker, not sure how long you have been here, but let's just say that Tincup is a reliable source whose word can be trusted. There are many MANY "old souls" here who can vouch for that.
Posts: 220 | From central TX | Registered: Jun 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Rock-
i don't know you are and what you've done for the Lyme community. maybe you're a tireless hero who has accomplished much and i should be indebted to you but just don't know that.
but, if your post here is nay indication, somehow i doubt it. there is absolutely nothing constructive in it. IMO, it is precisely the kind of post that is deliberately meant to sow division and doubt. no thank you.
TinCup and i have had our differences in the past- some major- about how to go about things. But even when she PO'd me the most, I never doubted her dedication to the lyme community. And the FACT of her advocacy year in and year out for decades speaks for itself.
After working together with her on something fairly significant, I've come away with nothing but the utmost respect for her, and awe for her ability to get up every next morning to do it all again.
She doesn't need me to defend her. I'm saying for myself- your kind of insidious attack really makes me angry. I'm fighting for my own health and advocating for others and right now, i see people like you as standing in the way.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
It is interesting to me that the comments Rock made aren't being addressed. Very interesting how Tincup, did the 'two step' hop...a diversionary move to get off the subject.
I rarely come on this site, because everytime I do, I become frustrated. Is it 'lyme' that affects one's comprehension, and throws you right into defense mode. To me it seems everyone exhibits signs of paranoia to anyone who invites one to question a comment or statement? Everything isn't black or white, right or wrong. You can forget about intelligent discussion or debate here. Maybe I'm a skeptic, but I am only willing to 'trust' someone who in turn is willing to answer a challenge. Not someone who does the 'Mambo'.
Read Rock's comments again and see if someone out there can't make a thoughtful retort.
Alex
Posts: 24 | From NJ USA | Registered: Nov 2003
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posted
Texas Chaos-How do you know the people who signed this letter aren't people of integrity also?
SOmetimesdilly-I read Rocker's response twice and I do not see this person doubting Tincup's dedication to the Lyme community. Rocker asked questions that, frankly, that I am asking myself.
Well...now that you have baited all of us, Tincup, I agree, please show us the letter. I am fully capable of evaluating and deciding for myself. If I feel that I need to respond to these people then I will do so. With all due respect, I don't follow blindly vague emails. Post the letter. Buckman
Posts: 5 | From New Jersey | Registered: May 2007
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