Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
At the last tick borne disease working group meeting (TBDWG) I signed up to provide a verbal comment, which I normally never do.
I do submit detailed written testimony for each meeting though to try to help our cause, and did again this time.
Unfortunately, not thinking they would, they picked me for a verbal comment, and then said we can't give our 3 minutes away to someone else (my plan B). OOPS!
Anyhow, I did what I could- three minutes isn't a lot- and they just put the meeting video online, which included all of the people from the public that spoke.
Gotta laugh!
A person named Enid Haller (never met her), who said she is from the Martha's Vineyard Lyme group, got three minutes too (again).
She had already put me in her little speech the time before and tried to crush /smear me by lying all over herself.
It was so ridiculous what she was saying and I've been laughing ever since.
I didn't know what she'd said this last time cause I headed to the kitchen to grab some breakfast after I spoke.
Tonight I finally saw the video and heard her speech. It is even dumber than her last performance. And again, full of lies.
For one thing, she claims I run LymeNet! HA!
Actually, with all these lies she is telling, I am really beginning to feel like she doesn't like me for some reason.
The entire meeting is at the link below. If you want to hear Enid's Follies you can go to about minute 19:35.
It would be good to know what she is doing, and take note of the few that she claims feels the same, in her effort to split up the Lyme community.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And the national Lyme Disease Association, who was also lied about shamefully by Enid multiple times, has about 100 (my estimate) affilates, supporters, etc.
It makes sense that GOOD groups are under the LDA umbrella. We know who we can trust.
Enid claims these groups below have told her bad things about me. Since they are lies, isn't that just gossip of the worst kind?
And is this who you want representing you, as they claim to do?
The Mayday Project- (yes, a LONG history of attacking and making patients and advocates miserable- very hateful stuff)
Lyme Army (heard of them perhaps, don't know much if anything about them)
NatCap Lyme (long history of lying about me and many others in an especially cruel fashion. In fact, some of their members were banned from LymeNet for being bad girls and boys.)
Empire State Lyme (the 1st I've heard about it)
Gotcha (never heard of them?)
Lyme Disease Foundation (LDF- Karen Forschner- who has done incredibly bad things to disrupt our efforts)...
And as Enid said... "many other Lyme advocacy groups".
Oh, and no, I don't run or have anything to do with an "internal character assignation program" as Enid claims. Never heard of such a thing. (I can't stop laughing about that one!)
But, if such an evil program exists, but gives away a LOT of ice cream, I might consider joining. HA!
posted
Enid .. Tincup does NOT run Lymenet!! I DO!!!
She's not even a moderator, so it would be pretty hard for her to run things here!
Crazy woman. I hope to listen to this nonsense later.
Go back to fishing, TC !
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I just wanted to thank you Tincup for speaking at the Tick Borne Working Group and for all your hard word and dedication throughout the years π
I listened to all the speakers. All very gracious. Each one expressed 'thank you for the opportunity to speak', 'thank you for your time', 'thank you for your consideration', all very respectfull.
Until Enid Haller. . . . Had to listen to it twice because it absolutely made NO sense. Phases like 'gestospo inforcement group', 'internal character assassination', 'hit program', 'slandered intentions'.
No one mislead your intentions Enid with the verbal garbage that came out of your mouth. How is this productive ? You came across unstable and spiteful. What a wasted opportunity.
The bartender in me says "If you can't conduct yourself properly and want to start a fight, take it outside and not in a place of buisness."
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey TuTu...
Sure made me laugh!
And you know, I tried to run things here, but there wasn't enough ice cream in the whole world to have me doing what you have to do!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey BB...
So nice of you to say nice things!! Thanks! You make me blush and scoot around in my seat all akward and stuff.
I'm afraid she is just one in a worn out line of strange ducks who can't seem to say anything nice about or to others. And she sees no harm or shame in lying- even in front of God, and the federal government.
In my opinion...
When you want to make changes or educate others you kindly say, for example... "Lyme patients don't always get a rash."
You DON'T say... "So-and-so is ugly and has big feet, and sometimes people don't get a rash."
This little group of misfits haven't figured out you simply need to be nice, mind your own business, work hard, be honest, not be crazy and obsessed with what others are doing, and go along your merry way in an effort to help others.
It seems they want to beat to a pulp anyone or anything they (falsely) think are in their way so they can make some sort of point. It doesn't work that way.
I know YOU know that BB, but they somehow have driven off the reality road and are stuck in a deep, muddy hole they can't seem to get out of- at least so far. And they just keep slinging mud.
This has been going on for so long I don't know if they can ever be trusted again. And this is why when patients say- you all need to get along- we won't ever agree to it.
Personally, I (and many other organizations and groups) refuse to work with someone/groups who are disrespectful, who lie, who hate people, etc.
I don't want my reputation going down the tubes with them. They are embarrassing to me and others.
And the people I do decide to work with- I do my very best with them every day to try to help patients.
And I like your comment about taking it outside! Right on!
It is funny, they won't approach me, but instead they hide behind tall fences and throw their rocks, then like little, mean, sissy girls, run away.
OK. That wasn't nice. I'll stop here, but please know I am so very proud of you and all you are doing to help so many. And you do it the right way- with the facts, and so very nicely.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Tincup
When i started on my journey, i hit pay dirt when I met you. You saved my life and so many, many, many, many, many, many, many, many others.
How do you repay someone who saved your life? (Repay must be through barter as I am broke).
You offered COLD HARD SOBERING FACTS with a 'grab the bull by the horns' mentality, a 'you can do this' spirit, with an abundance of compassion and genuine concern.
Your reputation precedes you. You are the BEST Lyme Patient Advocate. ππππππ Trouble-makers always do themselves in with their mouths. All you have to do is sit back and watch with ice cream.
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey BB,
I don't know if you are looking for a job or not, but I'd put in a very good word for you at a Hallmark Card Company- for a job writing amazingly beautiful things!
You always say such sweet things, which is a real boost for me and many others.
Thank you!
And you owe me NOTHING! You've passed along your knowledge and lent a hand to many others, and that is more than I could ever ask for my friend.
Now, if I had some ice cream I'd share it with you, ok ok, and Tu Tu too! But, my refrigerator is broken down since the weekend.
posted
Tincup, you have always been a reasonable, well researched voice here. I have always appreciated your input, and should have told you so before now.
I think the people you are talking about are on my neighborhood forum. They need a life, preferably one that incorporates the Golden rule.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Daisys! Nice to see you!
And I have to ask... did you say such sweet things because you knew I went out to get ice cream tonight? HA!
I'll share some with you too! Just don't tell Tu Tu!
And thanks for letting me know. Sorry you have to deal with them.
Lyme is hard enough without all this drama and lack of manners or respect.
At one point I thought this was a Lyme (mental) thing, but I'm betting you are right.
It's just palin old nastiness and no adhearing to the golden rule. Such a shame.
Thanks for weighing in on the topic and for your kind words. I do appreciate it.
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