posted
The petition to support the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005.'' (S.1479, H.R. 3427) is now available at www.petitiononline.com/lyme
Thanks cave76 for your review and input.
BettyG - I think all but one of your concerns were addressed. I can delete any signatures with inappropriate comments. I didn't put all of the current congressional supporters on since the petition was on the long side already and also I cannot change it to add more names when we get more supporters!! Maybe we can track that separately.
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
Lynne, I signed & glad you have it posted here as well. Thanks for taking into my remarks, but I can't remember making them; you must have another screen name as this one doesn't ring a bell with me.
Glad you can delete any INAPPROPRIATE comments as they appear. Thanks for your efforts Lynne.
I emailed your link to my lyme group list, close friends/relatives. Bettyg
IP: Logged |
Thanks for sending the word out to others too. That is what will really help get a lot of signatures.
Take care, Lynne
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
Thank you newbie Lynne for all your efforts in writing this petition; now to get it circulated nationwide.
Thanks for the link back to your offer to do this, etc. I read so many posts/replies...I can't remember who wrote what, etc. Bettyg
IP: Logged |
bettyg
Unregistered
posted
Lynne, I added 4 more of my immediate family members today bringing it up to 61 at that time.
Noticed someone is showing ads in there with their signature; Lynne, I feel that should be DELETED PROMPTLY. That will get other folks doing that type of thing taking away what we are trying to do with this lyme/TB bill.
I'm copying the below to GENERAL link you left there. I wrote this for my NEWBIE'S LINKS/ADVISE I send by private message daily to the newbie's I see coming on daily; 8-14 people daily!
To all reading this: please take 5 minutes and sign the below online petition on the 2 bills in USA's CONGRESS asking for a special LYME/TICK-BORNE DISEASE ``TASK FORCE'' be created; NO $$ for funding; it's strictly ALL-VOLUNTEERS on this task force we are asking for!
If you go to www.lymenet.org `s ACTIVISM section, look for posts about S 1479 and HR 3427 that are in Washington, DC. There are links there where you can read the full bill as submitted. Please go there and check if YOUR STATE'S senators and house of rep have CO-SPONSORED each of the above stated bill nos.
When you are in there registering yourself, please ask your family members and close friends/relatives if they would approve your signing online their name, state, city is optional, to the petition.
You will show YOUR email address, and confirmations will be sent to YOUR email address confirming you signed the petition. There is nothing else involved...no money, etc.
If you have any questions, please send me a PM, private message, and I'll get back to you daily about this project!
I'll teach you how you can streamline this if you are doing multiple family entries with majority of the same info WITHOUT RETYPING it all! Bettyg is my nickname on lymenet .
The petition will then be sent to congress to the committee who is holding it up now! It's been a long time in getting this far folks, please help us SUCCEED in getting lyme/tick-borne diseases discussed and acted upon in congress! THANK YOU ALL! Bettyg
IP: Logged |
Thanks for all your help. Just wanted to let you know that I think that the advertisements you see are actually paid advertising. As with many websites, this is one of the ways that the website is paid for.
They do offer the option of eliminating the advertising, but you have to pay a fee, so I think we're just going to have to deal with the advertising!
Thanks again, Lynne
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
Lynne, I noticed this later on too. It's been consistent from the beginning; FREE is wonderful. I'll just overlook them now that I know they are a perment fixture! lol
now 288; 1 of my names did NOT GET ENTERED; so I added it now. So folks, look at the FINISHED product when you are done typing so ALL INDIVIDUAL NAMES appear on the list ok ! THANKS!
I copied something else of details, but lost it coming from the general post to here...shucky darn. Bettyg
IP: Logged |
bettyg
Unregistered
posted
617 names now; 1250 pm, 9-5
I'm pasting this to general & medical too!
CONGRATS CAROL B; such a touching story you wrote there! Way to go; WELL DONE MY LYME FRIEND!
LYNNE, ANN, & CAVE,
Here's a thought of instead of making paper copies of this entire petition, that we EMAIL our letters to our FEDERAL senators/reps and include the onlinepetition link!
This would be manageable to look at and work with vs. stacks of paper so high! Bettyg
IP: Logged |
bettyg
Unregistered
posted
694 names right before midnight! BG
IP: Logged |
bettyg
Unregistered
posted
1 3 4 7 new total 1152 pm, 9-10-06
IP: Logged |
bettyg
Unregistered
posted
I'm copying to ALL of your posts about the lyme petition.
1 5 1 9 on 9-11-06, 1155 pm
the 3 same posts are still there now..fyi only Bettyg
When posting this, I came across 1 of my posts from 2 weeks ago after this started with 300 sgnd up!
2,000 in 2 weeks! That's progress! KEEP IT GOING UP UP UP!
I noticed one 5th grader signed & wrote a touching story.
How about MORE KIDS WITH LYME SIGNING?Wonder if the LYME PETITION could be posted at Dr. Jones' office for lyme kids/parents to see there if they do NOT HAVE INTERNET Bettyg
Wonder if the LYME PETITION could be posted at Dr. Jones' office for lyme kids/parents to see there if they do NOT HAVE INTERNET?
IP: Logged |
one lyme patient stated they spent $100,000 out of pocket for IV treatment last year; many touching stories being told here; sign up please! Bettyg
IP: Logged |
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
| IP: Logged |
bettyg
Unregistered
posted
2 7 6 7 .... finally other IOWANS have signed up!
Many impassioned comments on here now! Bettyg
IP: Logged |
bettyg
Unregistered
posted
----------------------------------------------- 2 8 9 0 ... yes, look at the IOWANS finally take off! HIP HIP HORRAY. I believe we now have only between 33-35 IOWANS. Bettyg
posted
2 9 2 8 with more Iowans signing. Bettyg -------------------------------------------------------------------------------- Ann, yes, I know how to copy/paste but it will NOT paste correctly to my older ms WORD program.
Remember, I lost my complete WORD PERFECT program 3-4 months ago, and can NOT get reinstalled correctly.
So I'm without the program I've worked with for 20 years putting me to a disadvantage using word which I wasn't taught how to use!
Ann, but that was a great idea! It should have been simple, but turned into a nightmare. BG
IP: Logged |
bettyg
Unregistered
posted
whoopie! 3 1 7 4;
250 more than the last time I visited late Friday night! Great increae of NC, & other states really getting involved.
Cave & Ann, in the last 50 names, one poster wants help and left her email address to send answers too! Can either of you help her? Bettyg thanks!
IP: Logged |
bettyg
Unregistered
posted
3 3 4 0, up 166 folks since earlier today when I checked in! WHOOPIE!
Lynne, great job in stating & keeping this rollingwith the help of Ann-Ohio's CHALLENGE which Cave, Calif. happily accepted. Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 4 6 9 and look at all the New Jersey folks signing up!
With 100-150 daily, we'll be up to 4000 this weekend! YIPPEE! Give it going and going! Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 6 1 1 ... another 142 since my last visit. Bettyg
Lynne, good seeing you post and your thoughts about things. You mentioned books, and I don't remember if I told you, Ann, Cave, and others about this or not.
PJ Langhoff wrote THE SINGING FOREST, a journey of lyme disease, about her personal trying/crying story to date.
It tells about her 2 kids with UNTREATED lyme, her ex-husband getting custody of them since she was too sick, and his constantly taking her to court over everything.
We talked privately, and I told her about Iowa's 2 senators were CHAIRS of:
Tom Harkin, chair of HEALTH, etc. committee
Chuck Grassley, chair of FINANCE committee
So she wrote a long letter to Tom Harkin and included one of her books for him to read all about chronic lyme disease! This was around July 4th.
Haven't heard from her IF Tom/office rep sent her a thank you letter for the book ^ letter or not.
This is an excellent way of bringing lyme awareness to our senators/representatives.
I agree with Lynne; we all have time to EMAIL our senators.
Go to activism to TINCUPS CONTACT STATE INFO about the 50 states. See if your state is done or not with emails ^ mailing addresses.
Many folks have worked very hard and many hours given to this project. So please use it when writing your senators/reps ok! Thank you all. Bettyg
posted
To all, I misspoke and edited out my wrong comments!
quote: -------------------------------------------------------------------------------- Originally posted by cave76:
Not betty here, but about your question on the passage of HR bill.
I haven't heard that either. I'll dig around a bit and wait for betty's clarification before saying anything.
She might have mis-spoke, meaning that the bill was passed out of Committee and into Subcommittee. *************************************************
And unless the Subcommittee did actually pass it, it seems to be dead in the water, since there's only a month left in this session. --------------------------------------------------------------------------------
Cave, you are absolutely right! I mis-spoke! I heard from Iowa's Rep. Leonard Boswell, who IS a co-sponsor of the HR 3479. I knew it passed out of committee, and thought all was done. I'm SORRY for my error. I'll go up above ^ delete that comment.
I did online ^ found what Ann did plus a summary for each of the bills was included too:
H.R.3427
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 7/26/2005) Cosponsors (81)
Related Bills: S.1479
Latest Major Action: 8/5/2005 Referred to House subcommittee. Status: Referred to the Subcommittee on Health . ------------------------------ SUMMARY AS OF: 7/26/2005--Introduced.
Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005 - Requires the Secretary of Health and Human Services to establish the Tick-Borne Diseases Advisory Committee. Requires the Committee to advise the Secretary and the Assistant Secretary for Health regarding how officials can:
(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;
(2) identify opportunities to coordinate efforts with other federal agencies and private organizations addressing such diseases;
(3) ensure interagency coordination and communication with constituency groups;
(4) ensure that a broad spectrum of scientific viewpoints is represented in public heath policy decisions and that information disseminated to the public and physicians is balanced; and
(5) advise relevant federal agencies on priorities related to Lyme and tick-borne diseases.
Requires the Secretary, acting through the appropriate federal officials, to provide for the coordination of all federal programs and activities related to Lyme and other tick-borne diseases, including:
(1) developing sensitive and accurate diagnostic tools and tests,
(2) improving the efficient utilization of diagnostic testing currently available;
(3) accurately determining the prevalence of such diseases;
(4) evaluating the feasibility of creating a national uniform reporting system;
(5) providing and promoting access to a clearinghouse of information on such diseases;
(6) increasing public education related to such diseases;
(7) creating a physician education program;
(8) establishing epidemiological research objectives to determine the long term course of illness for Lyme disease; and
(9) determining the effectiveness of different treatment modalities by establishing treatment outcome objectives
Again, my apologies; I messed up. Bettyg
IP: Logged |
posted
I have been sending an email message with my lyme story to friends and acquaintances asking them to sign the petition. One of our archery friends sent the same message to his circle and THEY signed the petition. We have to do more than sign it ourselves and have our immediate family do the same.
Anyone who would like a copy of my message so they can adapt their story email can pm me and I will send it to you.
Posts: 48 | From Wisconsin | Registered: Sep 2006
| IP: Logged |
bettyg
Unregistered
posted
Cave.
could you edit and use the tinyurl or SMALLER font size so it doesn't cause this post to go SUPER wide like it is now?
Glad you show both petition links there! thanks good buddy! Bettyg
IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I can't figure out why people stopped signing this petition when the LDA petition was begun.
This is a totally different matter. Signing the LDA petition is great, but you need to sign this one too.
This one goes to your US Congress, people! It is to get them to pass bills that were worked on by so many good people and were co-sponsored by a goodly number of the Representatives and Senators.
The petition to the US Congress written by Lynne and found at www.petitiononline.com/lyme/ needs less than 250 more people signing to reach 5000 signatures.
That would be a great, positive number to show congress how many of us are effected and know they could help.
Read this wonderful appeal to Congress to pass the two companion Lyme bills now in committee. Sign it and enter a comment about your concerns.
Then: Click on "Send this to a friend" and get the word out there.
Thanks, Ann - OH P.S. this is not the LDA petition at www.lymediseaseassociation.org which is for an entirely different purpose. You should sign that one too.
posted
I tried sending Dr. Jemsek an email from his web site using the contact me info; it was RETURNED! Has anyone else had problems getting an email thru to him on his site? thanks
IP: Logged |
posted
Don't want to muddy the waters, but I just received an email from one of my Senators in response to an email from me discussing the Lyme Bill currently in Committee.
Dr. Frist is currently Majority Leader of the US Senate and of course a doctor. I was so disappointed with his response.
He is pretty much saying that nothing of any significance is going to get done between now and the beginning of next year
and we all know that since so many congressional seats are changing, the members of the committee or subcommittee discussing this bill will probably change also.
Just posting this email from Dr. Frist to let you know how your tax dollars are supporting a lengthy adjournment by congress.
I believe I recently read or heard that this congress has only been in session for less than 180 days out of the year. I might be wrong on that figure but it was a low one.
SENATOR FRIST'S EMAIL TO ME:
"Dear Friend:
Thank you for contacting me. After twelve years of proudly representing Tennessee in the United States Senate, I will be retiring from the Senate and returning home at the end of the year. I am proud of the progress, growth and change our country has experienced during this time.
One of the great difficulties of preparing to leave office is recognizing the limited time that is left to address matters of concern to Tennesseans. Therefore, it is with deep regret that I write to inform you that I will not be able to respond directly to your correspondence in the short time remaining.
It has been an honor to represent you in the United States Senate, and I am eternally grateful to the people of Tennessee for entrusting me with the privilege to serve.
Sincerely,
William H. Frist, M.D. Majority Leader United States Senate"
Blah, Blah, Blah, Blah (my words) Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
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/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[Mad]](mad.gif)
Bettyg ![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[rant]](graemlins/rant.gif)
Has anyone else had problems getting an email thru to him on his site? thanks 
Printer-friendly view of this topic