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» LymeNet Flash » Questions and Discussion » General Support » CALL TO ACTION 2009

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Author Topic: CALL TO ACTION 2009
johnnylight
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Member # 18518

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CALL TO ACTION 2009 #2 (March 18)

from Pat Smith, President, Lyme Disease Association, Inc. (LDA)

http://www.LymeDiseaseAssociation.org

IDSA Stealth Campaign to Kill the Lyme Bill

IDSA is afraid of your voice. Use it today to defeat them and your disease!

Do you know!

While you are struggling to get diagnosed, treated, reimbursed for your medications and trying to protect your doctors right to clinically diagnose and treat, a medical specialty society is quietly working behind the scenes to eliminate the opportunity for research into your disease--research which could hold the key to your health.

Last week, LDA uncovered a behind the scenes maneuver initiated by the Infectious Diseases Society of America, IDSA− a letter, sent to doctors in specific states, asking them to oppose the Lyme bill, which they describe as one "that would establish a federal advisory panel on Lyme and other tick-borne diseases heavily weighted with patient advocate group representation and with a special seat reserved for a chronic Lyme disease physician."

In the letter to doctors, the IDSA president said, "the bill's overt support for chronic Lyme disease and other views promoted by Lyme disease activists is troubling. We are concerned about the federal government backing `chronic' Lyme disease when Lyme disease has never been shown to be a chronic infection, and when those patients diagnosed with this dubious condition are frequently treated with long-term antibiotic therapy, exposing them to significant risks for questionable benefits. Our mission is to promote public health and good patient care, and we are concerned that this bill would do neither."

To defeat the bill and the research monies, IDSA asked doctors to sign onto a letter to Congress that states, in part, "we are alarmed at the references to `chronic' Lyme disease." It stated some study patients with a "previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression--conditions that need treatment with something other than antibiotics." IDSA "urge[s]" our Congressman to, "oppose it and to not cosponsor the bill."

IDSA is trying to silence treating physician and patient voices in DC. It does not want research which can help you be accurately diagnosed and treated, but continues to promote the "not Lyme" diagnosis, which means no antibiotic treatment for you and your families. We NEED you to CALL your federal representatives this week to combat this assault. We MUST ensure our representatives are not swayed by the IDSA's propaganda!

TAKE ACTION NOW!

* Click here to determine who your own US House Member is and who both your Senators are. http://www.visi.com:80/juan/congress/

* Please call all three of your representatives today!

Sample phone blurb asking House Members for bill support:
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

I am calling to urge the Congressman/woman to co-sponsor HR 1179, the Lyme & Tick-Borne Diseases Bill.

Lyme disease has become an epidemic spreading across the county, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor HR 1179 today. Thank you. (Give your name, address, phone number)

Sample phone blurb asking Senate Members for bill support
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

I am calling to urge the Senator to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced by Senator Dodd.

Lyme disease has become an epidemic spreading across the county, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced. Thank you. (Give your name, address, phone number)

For more information, go to www.LymeDiseaseAssociation.org, Click Legislation on top menu.

The Lyme Disease Association is now a partner with the Environmental Protection Agency in its PESP Program!

Pat Smith
President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
LymeDiseaseAssociation.org


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Messages in this topic (2)
4b. Re: CALL TO ACTION 2009 #2 (March 18)
Posted by: "newbrunswicklyme1" [email protected] newbrunswicklyme1
Wed Mar 18, 2009 12:33 am (PDT)
By the way, if any one has any doubts about how serious this is, I should add that an aquaintance of mine from Wormser's campus sent me a copy of the letter W. was sending out - it was BRUTAL about all of this, and also very, very deceptive. Did not tell the truth at all.

We do need you all to make your voices heard, in order to offset the IDSA's latest slimy move. One of the things that killed me - they are FURIOUS that we DARE to believe there is CHRONIC Lyme = this is serious folks - an attempt to wipe CHRONIC off the map!!

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Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Good for you J...

And thanks!

You said.. "By the way, if any one has any doubts about how serious this is, I should add that an aquaintance of mine from Wormser's campus sent me a copy of the letter W. was sending out - it was BRUTAL about all of this, and also very, very deceptive. Did not tell the truth at all."

Yes. It seems his own camp (a good number of them) are turning and running ... and the decent docs .. not to mention the politicians and sick patients.... are done with this mess.

His ship is sinking! Change the slow leak into a tidal wave!!!

Finish it off.

Contact your Congressman and make them cosponsor the Lyme disease bill so WE will have a voice.

PLEASE!!!!

This is what they don't want. They are threatened by any of us having a say in our own health care.

If for no other reason.. do it to protect your LLMD!!!! And to stop these butt heads from threatening other doctors who want to treat.

Here is a link. It takes 3 minutes. Ok maybe 5. But it is YOUR job to help make change and STOP THE MADNESS!

The chronically ill volunteers can't do it by themselves! Patients, all of us need to do it for ourselves and for everyone who hasn't entered the Lyme nightmare yet.

Here is the link.

http://www.cwork.com/index.php?option=com_content&view=article&id=122&Itemid=108


Thanks J for posting this.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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johnny, thanks!! it's helpful to show the DATE OF ACTION in subject line since we get several get going on at SAME time.

just click pencil to add date to subject line...th

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johnnylight
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Hi, i copied ans pasted this off another blog. I hear that Pat is very serious about this and we need to come together fast and furious to fight against this. i sent this out to all the local news papers and ny politicians.
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MissMari
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I posted this on my Torchy Blaine myspace.

I have quite a few listeners and supporters that are interested in this.

Of course, I also added my own Open Invitation for a toe-to-toe with the IDSA Committee to discuss Lyme in the Real World.

Any time, any place, I'll be happy to take on Wormser, et al.....

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

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bettyg
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i called my 3 iowa federal reps/senators today.

i asked if they had received letters from IDSA or phone calls about our lyme bill to KILL IT; NONE HAD!! i explained what was going on.

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