They need a total of 25,000 signatures by May 12. Please go and sign. Get your family to sign. Get your friends to sign. Get their friends to sign. Ask friends to post the link on facebook/google+ etc. requesting others to sign. Email it to your friends. TRY EVERYTHING!!!
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Neutral tone, here, really.
So, if 24,000 people say this is a problem, those 24,000 don't matter?
Who decides the magic number? We've asked time and time again and I'm just tired of signing petitions all the time just to get recognized.
I can't see what organizations might be sponsoring this. Can you find out? It just does not show that at this link.
I'd feel better if the LDA, LymeDisease.org, Time for Lyme and Turn the Corner Foundation were all behind this.
Thanks for helping me find out.
Why people may hestitate (myself included):
I do not want my name linked to lyme on a public forum or public document. This could show up forever through Google and I can't take that risk.
Just one more reason I'd rather have the strong lyme organizations work for change without us all having to go public, individually. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Keebler, you are an absolute Godsend and have helped us all IMMENSELY.
What is the backlash of having your name on a petition to fight something so immoral and wrong? It's not saying that you have lyme, it's just saying that you support the fight for fair treatment for CLD.
Most of us have experienced the persecution from doc's and insurance companies, what more can happen negatively from your name being associated w/ this disease?
Saying that, petitions may not be the answer. It might be futile to fight the healthcare profession, bigpharm, and gov't. A simple email to your local news station or a short vid on youtube might hold more weight.
I think the Dr. Phil segment and Under Our Skin did way more for lyme than any type of lobbying against the IDSA.
I believe we have to go public. Even if you don't want to use your real name.
I mean no ill will whatsoever, I've actually thought of you when my LLMD said something and thought "that's exactly what Keebler said in a post".
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Those who are "flying under the radar" and actually getting some insurance coverage could jeopardize that.
Good point about it just shows support but as insurance companies do their searching for ways to find those who are problems to them, such lists may give them some hints.
Matters of employment or obtaining new insurance coverage could also be at risk.
Most reputable petitions require full name, address, etc.
I think we all are weary of signing so many petitions - having to repeatedly prove the need -- and I just wondered what major lyme groups are behind this so that I could learn more.
Unless I know that the LDA, etc. suggest this, I would ask more questions about the wording, etc.
The wording can trip up even the best of intentions and, for myself, if the top lyme groups okay it, I'm on board. If not, then I'd want to do more homework.
That's all.
I absolutely agree in activism, just want to know who is behind anything I sign and all the ramifications. If solid groups have vetted that, it's so much easier.
=============================
The wording of this could boomerang and seems unclear to me, as the CDC and IDSA DID look - they just did not SEE.
But they will say they looked and that they had that (bogus) review committee a year or so ago. This language just seems open to interpretation.
It THIS what the LDA, etc. suggests? If so, they would have their reasons but I just wondered.
I could see no sponsor listed at the link. Maybe my eyes just didn't see it. Did I miss it?
--
". . . The CDC and the IDSA should be forced to look at the scientific facts and reform the current guidelines . . . ." (end excerpt)
That is the main "ask" of the petition, as my eyes read it.
I have concerns with the language used and think it needs to be much stronger and specific, in light of the disastrous outcome of the IOM IDSA meeting (Sept. 2010) that sank so many hopes for those with lyme.
(Despite the very best stellar efforts of many fabulous lyme advocates, the IDSA slithered away.)
Still, going back to this petition now -- or for anything I sign, I like to be able to easily find:
---------------------------
Author /Organization(s) driving the petition
Sponsors & other Endorsements
Vehicle of advancement to best ensure success.
The parties/organizations charged with driving such vehicles.
What individuals or groups are opposed (to the bill / cause) and why?
---------------------------
this past year, in my state, a group tried to get a lyme bill introduced and, of course, we all got excited.
However, when the sponsorship of the bill came to light, it was learned that they were NOT at all in flavor of proper lyme treatment but wanting to be sure to prevent it - for all time to come.
The language was very tricky and, had that passed, could have been a disaster.
The bill was asking solely for the IDSA arm in my state to address the issue. They said "there is no problem because there is no lyme in this state."
The state legislators took their word for it which was too bad regarding education, of course. However, it did stop the bogus bill from moving on to clobber us. -
[ 04-17-2012, 04:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- wintertree,
Just wondering if you had more details on which lyme groups might be sponsoring / endorsing this bill ?
The only hint of that is in a little box just below the bill, but it does not connect at all. Just says:
creator
elizabeth h Mechanicville, NY April 12, 2012 Signature # 1
------------------
Who is that? Is she with a particular lyme advocacy group - or another group that could use the language to block our perceived impression of it? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wintertree? Are you still around? Just wanting to know more
Tincup has similar serious questions regarding this other petition you ask us to sign: --------
Is there any mechanism by which emails can be sent out to both patients and anyone involved with lyme advocacy nationwide?
------------- We may have other suggestions to help with whatever project you have in mind. Connecting with an established lyme organization may be the best move.
ShazDancer has some great ideas to get you connected - then you won't have to do all the work yourself and can learn the ropes from those who have already blazed some of the paths for us. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeDisease.org has a different advocacy measure that has more specific wording. They are an established and respected organization: --------------------------
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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