Topic: URGENT ! SEND PETITION TO CONGRESS NOW, PLEASE
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Here is my new letter about the new bill HR 741. You can send it along with the text of the petition Lynne wrote. There are over 5550 signers now and more are needed.
The effect of this petition will be enhanced by sending it along with the letter about the new bill.
Anyone copy and paste the letter. The next post is the text of the petition that you can copy and paste and send with the letter Letter to copy and paste: . See directions below.
Insert your own choice of comments from the petition in the letter if you wish. Copy and paste them in this letter right after the website for the petition. DO NOT copy people's names, just the comment.
Be sure to copy the petition statement and send it as well. I have added a version to this thread that will fit on one page.
Just put your zip code in the blank at "Write your officials".
Then click on "Or compose your own message to Federal or State elected officials."
Click on "Federal" and your message will be sent to both your senators and your representative.
Letter to copy and paste:
Two Congressional bills (S.1479, H.R. 3427)submitted last session of congress would have provided funding for much needed action to address Lyme disease and other tick-borne diseases and the disastrous effect they have on Americans.
Thanks to Representative Christopher Smith (NJ-4)and his 16 co-sponsors, H.R.741 is now before the House. This bill will "provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee."
The Advisory Committee is vital in light of the terrible guidelines recently published by the Infectious Disease Society of America which will end up causing more harm than good as insurance companies will deny treatment based on the IDSA advice.
More than 5500 people have responded to an online petition addressed to the Congress (see petition statement attached). They live in every part of the country. Their names and locations and comments are available at the petition www.petitiononline.com/mod_perl/signed.cgi?lyme
Lyme disease is a true national crisis. Please help get the funds needed to educate physicians and the public and to develop a decent test and effective treatment. Please pass H.R.741 and a companion Senate bill {yet to be submitted) this session.
To learn more about Lyme disease and other tick-borne diseases go to www.ilads.org.
To: U.S. Congress We, the undersigned concerned citizens of the United States of America, respectfully express our support for the expedient passage of the ``Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005.'' (S.1479, H.R. 3427). This bill, which can be viewed at http://thomas.loc.gov, provides ``for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.''
The bacteria which causes Lyme disease, Borrelia burgdorferi, was discovered in 1982. Although 24 years have passed since this discovery, we still lack accurate testing and live with controversy in the medical field over the diagnosis, symptoms and treatment of this devastating illness.
Many mistakenly believe that Lyme disease is definitively diagnosed by a simple blood test. In fact, the standard blood tests used to test for Lyme disease have been shown in several studies to produce an unacceptable number of both false negative and false positive results. The College of American Pathologists Proficiency Testing Program has concluded based on its own study that ``these tests will not be useful as screening tests until their sensitivity is improved.''
While developing an accurate Lyme test would be ideal, the diagnosis of Lyme disease could be improved through an increased awareness of the clinical presentation of this disease. It is widely recognized that a bulls-eye rash and joint pain/arthritis are symptomatic of Lyme disease. In spite of extensive research, it is less well known that the Lyme rash is often not in bulls-eye form, that many never develop a rash, and that Lyme can produce psychiatric, cardiac and cognitive symptoms. Clinical observations and preliminary studies suggest many other symptoms may be indicative of Lyme. Further study in this area is critical to improving the clinical recognition of Lyme disease.
A lack of consensus in the medical community regarding the most effective treatment, particularly for chronic cases, adds yet another layer of uncertainty to the understanding of this disease. Among the most important issues in this regard is the long-term use of antibiotics for the treatment of chronic Lyme. One school of thought limits their use to four weeks, while the other supports their use for longer periods when clinically indicated. Quality research in this area has been remarkably sparse, is long overdue, and is a necessary step towards effective treatment.
Lyme disease is more prevalent in some areas, however, ticks carrying the Lyme bacteria have been found in 48 states. In addition, due to frequent travel and relocation in the United States, people in every state are afflicted with this disease. It is imperative that doctors in all states are able to diagnose and treat Lyme disease and other tick-borne diseases accurately.
Due to the debilitating nature of the disease, particularly in its chronic form, people are often forced into long periods of leave from work or school; causing financial burdens on Lyme victims, their employers, and taxpayers. Because the disease becomes harder to treat the longer it is allowed to progress, more effective diagnosis will yield shorter treatment times, and lower costs to all involved parties. It is our hope that the passage of this bill will result in significant progress in the diagnosis, treatment and prevention of Lyme and other tick-borne diseases.
Sincerely,
The Undersigned
The Lyme and Other Tick-Borne Disease Petition to U.S. Congress was created by and written by Lynne Lyons ([email protected]). This petition is hosted here at www.PetitionOnline.com as a public service. There is no endorsement of this petition, express or implied, by Artifice, Inc. or our sponsors.
posted
Ann, what is Lynne/originator of this petition, doing with her OFFICIAL petition and when?
Haven't heard. Last I was told by her on this board, that ONLY SHE would be doing something on the petition she started.
That's what I was told when I was asked to stop keeping track of how many IOWANS had signed Lynne's petition, and that we ALL were asked to do this since the 1 Iowan complained publicly about it.
Sorry, but I'm confused with this neuro lyme mind Ann.
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Betty, I sent you a private message some time ago saying I had communicated with Lynne about this.
She is fine with people sending a letter and the petition to our Congress. She said she had posted on Lymenet about that, but it was at the end of somebody else's thread, so maybe not so many people saw it.
You can keep track of anything you please as long as you don't use it on this board, or use people's names and comments with their names attached. I think that was what upset somebody.
You can always e-mail Lynne about this as her e-mail address is at the bottom of thepetition.
posted
Ann, how about all caps for the subject line of this thread, to bring attention to it?
We have lost several of the original sponsors of this legislation in the recent election, so if it doesn't pass this year, we have to start again.
It will be a miracle if Barton lets this out for a vote. He has also bottled up the autism legislation. But he is losing his chairmen job in the new congress, so at least that is one good thing from our point of view.
Give it our best try this year!
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
This may be in wrong area, but copying this here too! BG
Dated 11-13-2006; recd. 11-28-06
Dear Betty:
Thank you for contacting me with your support for expanding LYME DISEASE RESEARCH . I appreciate your sharing with me your personal story of how this disease has affected your life, and I hope that you are doing much better.
I appreciate your email regarding the (IDSA guidelines) testing for lyme disease. I am very sorry to hear that you had to go to Minnesota (out of state) for CHRONIC LYME DISEASE TREATMENT.
Since health insurance mandates are done by individual states, you may want to contact the Iowa Division of Insurance at 877-955-1212 or you may write to them at IOW INSURANCE DIVISION, 330 Maple St., Des Moines, IA 50319-0065.
I would also like to thank you for bringing to my attention the existence of the LYME DISEASE ASSOCIATION website. By educating more people about this disease, we are taking key steps toward improving the lives of those afflicted with Lyme disease.
In closing, I want to relay to you my strong feelings about representative government. For Democracy to function, there has to be two-way communication between Americans and their elected representatives.
By sharing views with me, Iowans play a vital role in this process. Hearing from you enables me to be a better US Senator, and I very much appreciate the time you took to inform me of your concerns.
Sincerely,
Charles E. Grassley US Senator CES/mm
NOTE: This was in response to the email I sent to ALL my elected federal officials in congress about the lyme disease petitions and the IDSA 06 lyme treatment guidelines that screw us ``chronic lymie'' patients! This was sent the weekend BEFORE Nov. 8 elections. So not bad for response time to me; better than normal!
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bettyg
Unregistered
posted
Ann, I just sent your letter to 2 senators, 1 rep from Iowa.
I'll send the petition separately tomorrow; I'm bushed after typing the last of 40 names into Lynne's petition.
It was easy and THANKS SO MUCH for getting it all together and organized!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
To clear the air. There is NO competition between the two petitions here on Lymenet. YOU SHOULD SIGN THEM BOTH.
You should CALL your congress person TODAY and ask them to sign on to the MEMBER LETTER that was sent to them by Congressman Christopher Smith (who submitted the Lyme Bill to Congress!). It is very important! See the message from PAT SMITH, head of LDA at
You should E-MAIL your congress people to ask them to pass the two bills now before them. These bills provide for Lyme disease education and research and have been before Congress since June, 2005. The bills will die if they are not passed this year.
Go to http://tinyurl.com/y8wu3u to see a cover letter and a copy of Lynne's petition (which was started in August) you can send easily by following the instructions there.
BTW - if you go to this site and put your zip code in the Search box, you will get your congress people and their phone #'s AND their e-mail addresses very quickly.
PLEASE copy of both petitions to your FAMILY CHRISTMAS GET TOGETHERS W/FAMILY AND FRIENDS GETTING MORE .
ask them to help you as well; so take extra copies of the form to sign.
NOTE: the form i initially got was TOO SMALL, so i made up my own allowing twice the height for legiblitiy, and it was so helpful vs. the small ones i initially took that i entered 140 plus signatures on 2 lyme petitions!
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bettyg
Unregistered
posted
5 2 2 5,
only 9 more than 7 days ago! We need to go UP UP UP~
PLEASE copy of both petitions to your FAMILY CHRISTMAS GET TOGETHERS W/FAMILY AND FRIENDS GETTING MORE .
ask them to help you as well; so take extra copies of the form to sign.
NOTE: the form i initially got was TOO SMALL, so i made up my own allowing twice the height for legiblitiy, and it was so helpful vs. the small ones i initially took that i entered 140 plus signatures on 2 lyme petitions !
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Wouldn't it have been wonderful for someone to have a LAPTOP at all those airports with stranded people and ASKING them to sign up on our petitions? opportunity!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
One more note that these are two separate petitions -
and the other one with recipient not yet assigned, but collecting names to protest the Infectious Disease Society's new guidelines. www.lymediseaseassociation.org
Please sign both of them
Then go ahead and follow the info at the top of this thread to send the petition to the Congress to your congressperson.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Thanks, Ann-OH and others for making it easy and keeping it at the front of the battle lines. I used the "Federal" button on the website and wrote the president, my two senators, and congressman.
Dear Mr. President, Senators Boxer and Feinstein, and Rep. Herger,
I ask for your support for two Congressional bills, now in committee, (S.1479, H.R. 3427). As you know, those bills would provide funding for prevention, education, treatment, and research activities related to Lyme disease.
The recent passed IDSA Guidelines are already causing untold harm to sick people. I'm sure you know the IDSA is being investigated by a State Attorney General for possible anti-trust breaches in formulating these arbitrary guidelines, which fly in the face of numerous peer-reviewed studies on the tenaciousness of the lyme bacteria. These new "Guidelines" declare there is no such thing as chronic lyme disease -- in bold contradiction to previous study conclusions of their chief author.
Most people with late stage lyme have been misdiagnosed repeatedly with everything from ALS to multiple sclerosis. Physician education would do much to prevent this. Unfortunately, the very foundation Americans rely on -- the CDC -- continues to mandate the outdated "2-step" testing for lyme, in spite of evidence that 75% of late lyme victims will test negative by ELISA but positive by the more accurate western blot. (Donta ST. Tetracycline therapy of chronic Lyme Disease. Clin Infect Dis 25: S52-56, 1997; abstracts of the VIIIth International Conference on Lyme Borreliosis; June 20-24, 1999; Munich, Germany. Abstract P193). Can you imagine the number of people with late stage lyme whose doctors will simply not test them further based on these CDC recommendations? These sick people are falling through the cracks.
Lyme victims are not getting help. Roughly half of them are children. My daughter, 14, was nearly crippled with knee pain from CDC positive lyme disease. Long term antibiotics returned her to playing soccer. She relapsed and suffered Bell's Palsy. Once again, she improved with antibiotics. The IDSA Guidelines would have withheld treatment from her under the pretext that chronic lyme does not exist.
In my own case, I literally had to save my own life. My neurologist - relying on the above CDC recommendations - refused a western blot despite my endemic area, recalled tick bite and rash, symptoms consistent with lyme, and numerous brain lesions. In fact I was CDC positive for not only lyme but babesia WA-1, a co-infection that he and other doctors are blissfully unaware even exists.
This should not be a partisan issue. I know of no other disease where patients have to fight for proper diagnosis and treatment due to ongoing physician ignorance. In my endemic area of northern California, most doctors continue to believe lyme is "rare." In fact, the only thing "rare" is finding a doctor knowledgeable enough to properly diagnose and treat tick-borne diseases. Physician education is sorely needed. Please support S.1479 and H.R.3427.
Thank you.
Posts: 3193 | From Northern California | Registered: Apr 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Wow, Michelle, that is a fantastic letter! Thanks so much for posting it here.
None of us can match that one, but writing your own cover letter is so much better than using the one I offer. It is YOUR letter and gets your ideas across.
If you haven't the time, please feel free to use the moderate effort I provided. You could copy it and edit it a bit to make it more personal.
In any case - go ahead - sign the petition and send it on.
First, go to www.petitiononline.com/lyme/ sign the petition and add your own comments. Tell your friends and family they can sign, too!
Then go to the top of this thread and follow the easy instructions to send a cover letter and the petition to your own Representative and your two Senators. It is so easy and will only take a few minutes.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Thanks, Ann, for keeping this important thread alive!
I'm embarrassed to admit I couldn't remember if I had signed it or not.
So for anyone else with that problem -- just start signing, and the computer will TELL you if you already signed it!
I realized my daughter Georgia had not signed it. But now she has. Anyone with kids, don't forget to add them. It's bad enough for our kids to have lyme but outrageous when doctors act as if they're just imagining it.
Georgia and I give each other "the look" when we encounter doctors like this. My claws come out. Doctors can mess with me and that's fine. But do not mess with my kid. Do not force me to embarrass you with your stupidity, because I know about 100 times more about lyme disease than you've forgotten from your pathetic 20 year old textbook.
But let me tell you how I really feel.
Michelle
___________________________________
Comments State City
5423. Georgia Bennett I'm 14 years old and CDC positive for lyme, with painful knees, Bell's Palsy. Amazingly, local doctors still roll their eyes, skeptical in spite of highly CDC positive bloodwork, multiple known tick bites and endemic area. The hostility makes you feel very small. Please educate doctors. Over half of lyme patients are just kids like me.
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
MICHELLE,
thanks for sharing your daughter's story w/us here on the board; very effective!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I communicated with Lynne (who wrote the petition) and she agreed that if I just rewrite the cover letter to reflect the needs for this session of congress we can still use the petition to show how many people signed on and are still signing on to it, and have a way for the health staff to see people's comments etc.
Please use the new edition of the cover letter at the beginning of this thread.
5554 people have signed on! All those wonderful Ohio and Wisconsin people really kept the petition going!
If you haven't signed, please do. Everything you need is at the beginning of this thread. I can really mean a lot and you will feel so good!
posted
ann, wisc. cheryll said she got 180 names ... done with LDA, but having problems galore with lynne's here showing duplicate names, etc.
looked to be around 100 names tonight from wisc. !! YEH CHERYLL, OUTSTANDING JOB.
ann, better look out; i'm sure mike/np40 got many wisc. folks early on; would probably be around your 300 total!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks, Betty. I was looking all over for Cheryl's name! She deserves a gold medal for collecting and entering all those Wisconsinites on the petition. Somewhere on the petition site I read that they take to remove duplicates and have in the past.
5464 That is so great. We are on our way to 5500!
Just sign and send the cover letter and the petition text to your congress people.
Go to the top of this thread for all the necessary moves. You can do it!
they were going so slow; she'd enter info; they would NOT go, and when they did; they would NOT show up.
then 4 duplicates would show up! very frustrating for her.
she posted initially about this in ACTIVISM so hopefully, you can go there and find CHERYLL's name!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Here is where the House bill stands. If your Rep is not a sponsor yet, send him/her the cover letter and the petition at the top of this thread. Ann
H.R.741 Title: To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee. Sponsor: Rep Smith, Christopher H. [NJ-4] (introduced 1/31/2007) Cosponsors (30) Latest Major Action: 1/31/2007 Referred to House committee. Status: Referred to the House Committee on Energy and Commerce. -------------------------------------------------------------------------------- COSPONSORS(30), ALPHABETICAL [followed by Cosponsors withdrawn]: Rep Ackerman, Gary L. [NY-5] - 1/31/2007 Rep Allen, Thomas H. [ME-1] - 2/28/2007 Rep Baird, Brian [WA-3] - 1/31/2007 Rep Bartlett, Roscoe G. [MD-6] - 2/28/2007 Rep Bean, Melissa L. [IL-8] - 1/31/2007 Rep Cummings, Elijah E. [MD-7] - 2/12/2007 Rep DeLauro, Rosa L. [CT-3] - 1/31/2007 Rep English, Phil [PA-3] - 3/7/2007 Rep Ferguson, Mike [NJ-7] - 2/15/2007 Rep Gerlach, Jim [PA-6] - 2/28/2007 Rep Gilchrest, Wayne T. [MD-1] - 1/31/2007 Rep Grijalva, Raul M. [AZ-7] - 1/31/2007 Rep Holden, Tim [PA-17] - 1/31/2007 Rep Kennedy, Patrick J. [RI-1] - 3/7/2007 Rep Kind, Ron [WI-3] - 3/9/2007 Rep Kirk, Mark Steven [IL-10] - 1/31/2007 Rep Langevin, James R. [RI-2] - 1/31/2007 Rep Lowey, Nita M. [NY-18] - 1/31/2007 Rep McHugh, John M. [NY-23] - 1/31/2007 Rep McNulty, Michael R. [NY-21] - 2/15/2007 Rep Ruppersberger, C. A. Dutch [MD-2] - 2/15/2007 Rep Shays, Christopher [CT-4] - 1/31/2007 Rep Stark, Fortney Pete [CA-13] - 2/28/2007 Rep Stupak, Bart [MI-1] - 1/31/2007 Rep Thompson, Mike [CA-1] - 2/12/2007 Rep Van Hollen, Chris [MD-8] - 3/1/2007 Rep Welch, Peter [VT] - 3/9/2007 Rep Wolf, Frank R. [VA-10] - 2/28/2007 Rep Woolsey, Lynn C. [CA-6] - 3/1/2007 Rep Wynn, Albert Russell [MD-4] - 2/12/2007
posted
thanks ann for update on who has co-sponsored new bill and what bill says for all our NEWBIEs coming online for 1st time.
earlier this week, i received a request for my 46 pages of newbie links/advise that i sent to our newbie Devon, age 15, website on lyme. someone had read about else i had which included 2 LYME PETITIONS that started a summary of what was in there.
so hopefully this person, young or over 18, will pass along to her parents, family, friends, etc. to get MORE SIGNATURES for BOTH petitions!
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bettyg
Unregistered
posted
ann, i stand by my comments i made.
i was informing them ONLY of the 2 lyme petitions that are currently going on. nothing more; nothing less. end of subject.
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
In the last 20 signers, Florida, North Carolina, Rhode Island, Texas, New York, Virginia, New Jersey, California, Washington, Massachusetts, and Maryland are represented!
There are now 5624 signers. You can help keep Lyme disease and the need for attention to this fast growing infectious disease in the forefront by sending the cover letter and the petition text to your congress-person.
Everything you need is at the beginning of this thread.
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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