Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To sum it up...
The IDSA no longer rules in the Lyme community. Through their own actions and our efforts to expose them, they have been discredited... and called on the carpet for their actions. FINALLY!!!
WE are beginning to influence and/or direct policy for OUR illness and treatment thereof and we've make advances for those who are chronically ill.
Smile when you read this information below.. as we are rocking and rolling.. and YOU have been a vital part of the effort.
Without YOU.. this never could have happened.
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Some accomplishments this year:
1. The Columbia Center has opened after years of work by many dedicated individuals and groups... and lots of donations from folks around the country.
"The Director of the Center will be Dr. Brian Fallon, Associate Professor of Clinical Psychiatry, Columbia University College of Physicians & Surgeons."
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2. The CT Attorney General's Investigation into the IDSA's guideline development process is moving forward. Offical word is hard to come by due to privacy issues but I was told "... the Connecticut AG's office is focused and vigorous in its pursuit of this investigation."
I also know they are "actively pursing" the situation and that in spite of my 'get 'er done' right NOW wishes... the wheels of justice move slowly. So hang in there with me!
Right now we need to sit and wait for the big boys to do their jobs. All details are in place... and it is looking good from what I can tell!
I "feel" .. MY opinion and don't tell the Lyme leaders I said this... that it is actually going better than expected! But don't quote me on that as I am NOT privy to any other information about it at this time... and neither is anyone else... as it is confidential. It is just a "feeling" that I am sharing here.
3. We have things going on that I've not seen happen before. Or.. at least not to this degree.
a. Check this site and look at the number of articles that have been published concerning Lyme disease just this year. ABSOLUTELY AMAZING!!!!
For years we've had to beg for ANY mention of the word "Lyme".. and then it turned out to be NEGATIVE to our side 98 percent of the time! In addition there are MANY more articles coming out with Bartonella, Babesiosis and Ehrlichiosis mentioned too.
b. Individuals are doing fund raisers across the country to help Lyme patients, research, and educational efforts. And keep in mind.. they are doing it in spite of the fact they too are ill or have family members with Lyme disease. AMAZING work!!!
c. Individuals like you are telling their stories and making a fuss so others won't have to suffer. I've never.. in 20 plus years.. seen this much attention to the topic. Keep talking to everyone! It's working!
d. More support groups are forming across the country and people are organizing. Canadians and folks from European countries are working together with us to help us move forward. We are MUCH more organized and widespread... and that is GREAT!
e. Websites dedicated to Lyme disease have increased and have been able to share information to millions that otherwise would have been out there all alone.. like MANY of us here were for years.
f. Protests, letter writing campaigns, petitions, town meetings, political meetings and efforts to get the word out have been fantastic! With the right leadership and motivated people at the helm... our plans for the community are coming together and showing progress.
They wouldn't have though... if it hadn't been for EACH and EVERY ONE of you pitching in to help! Keep up the good work!!!
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There is a lot more but I am having to stop here for a bit.
I just heard there will be an announcement of importance coming out in the next week or so... so please stand by!
Keep up the good work! We are making progress. Keep up the pressure!
posted
Thanks for the GREAT, ENCOURAGING SUMMARY!!! It was fun to read! The next few months will be very, very interesting. Wouldn't it be the sweetest thing if we saw some justice re: the IDSA?
Posts: 364 | From California | Registered: Sep 2005
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posted
Thx, tincup. We will not be silent about a pandemic that the whole world is facing.
Posts: 13116 | From San Francisco | Registered: May 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I am an incurable optimist but even that does not account for the changes I have seen since 1987 when I got involved. How ignorant we were, how innocent! We thought CDC was our friend, and were sooo nice!
We've gotten so much smarter and understand now we have to kick a** to get anywhere, politely, of course. We also have a LOT of really cool talented people who have come on board, people who are doing really amazing things.
It's hard for me to believe that some people are still fighting to hide the truth. This spring our enemies have shown their true colors as self-serving lowlife. I am happy to be part of any action that will bring them to justice and bring restitution to the millions of suffering people.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I've always thought a class action law suit might be the way to get them to sing a different tune in the guidelines, etc.
I think what they really didn't count on was by ignoring us, our numbers grew to an uncomprehendable figure - and now WE outnumber them!! lol
Thanks for the list, Tincup! I have posted before, I "feel" it too....My new mantra:
The tide is changing! The tide IS changing! The tide is CHANGING!!! THE TIDE IS CHANGING!!!!!!!
Posts: 176 | From Tenn | Registered: Jul 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yay*)!*)!!
That Lymie youngun Victoria doing the Lyme Walk where she lives- she wrote me,
"It's not a question of whether we will win, but when!"
!!! *)!*)!*)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
In that whole list of things,,,one thing in common,,, there is a solid string of Tincup footprints in the sand!!!
YOUR activism has pushed MOST all those things to a happy happening!!
Thank "YOU" for your tireless efforts!!!
Always and forever,,,indebited to "YOU"!!!
I consider myself a 'better' person for getting to 'know' YOU!!!
If only I could be 1/100 of the person YOU are!! sadly I remain--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thank you for posting this and for all you do.
I really needed this today. With three in my house diagnosed and facing constant opposition from family, friends and non-LLMDs, I feel I can't handle it all, and your post today had giving me hope and encouragement.
Thanks to you and all who fight and push on for us.
Posts: 194 | From Pa | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey..
Good to see some spirits lifted like mine were when I was writing this up.
There are MANY more things going on that MANY folks should get credit for... and I am going to say I'm sorry for not mentioning them all right now.
But the FUN part of that is.. there are so many things going on that are positive that they can't all be listed!
And I can look at the list of those who have responded here so far.. and I can actually name contributions each of you all have made to the effort.
Ya know... it is SUCH a great feeling to see that too!
THANK YOU!!! ALL of you. Without us working together.. we would be sitting in the muck and no further ahead than we were years ago.
Good job!!
And thank you all for the kind words too. You KNOW it makes me blush... so don't be doing it no more, no more.
posted
I also want to say THANK YOU to Phyllis Mervine, who has organized California's activism as well as the whole country's, and also publishes Lymetimes. Do you ever rest?! Posts: 13116 | From San Francisco | Registered: May 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
someday soon we may all be chewin' on a honeysuckle vine
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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