How about people going to the petition and counting up the number of people from your state who have signed on. Just the total number, no names or such.
[ 09. September 2006, 12:59 PM: Message edited by: Ann-OH ]
Posted by bettyg (Member # 6147) on :
9-1-06, IOWA has 10; 2 in Okla. are my step-daughter/hubby & they went on MY list! lol
Lymenet is `11 people under 10,000 MEMBERS ;
many have 2 or MORE nicknames; many trolls have invaded us;
but that leaves around 5,000 one nickname ONLY members so we should be able to get at least 2,500 of just LYMIES alone !
Ann, great challenge to all! Way to go you former IOWAN! Can't I count you too? ha Bettyg Posted by bettyg (Member # 6147) on :
367 on 9-2 at 1237 AM...no more Iowans for now.
COME ON IOWA, SIGN UP AND SHOW YOUR STATE PLEASE! Bettyg Posted by lymie tony z (Member # 5130) on :
Hey Ann,
I sent the petition to my old Church pastor at Evangelical Friends Church N. Olmsted...ya know the curch on Columbia just before 480?
Anyway...If the Ohio count goes up significantly as a result... I want half by proxy! LOL
zman
Posted by Squeegee (Member # 7219) on :
So far California only has 15 signatures and I KNOW that ain't so!
My LLMD told me that he manages around 700 patients! And he's just one doc.
Posted by bettyg (Member # 6147) on :
Ann, it would be helpful if we stressed for ALL SIGNERS to show the state they live in for your challenge as well as for congress' benefit knowing what states are involved in this?
Cave was a perfect example, she signed but forgot to add her state; it's so easy to forget. Bettyg Posted by bettyg (Member # 6147) on :
Quoting Ann:
Hey, here's an idea. How about people going to the petition and counting up the number of people from your state who have signed on. Just the total number, no names or such.
As of now, 9-1-06, Ohio has 16. Let's see you top that!!! .......
Ann, what I was/am trying to say is encouraging folks to sign up to SHOW THEIR STATE TOO with any comment they may wish to share with us all . Lyme brain when I wrote that; so sorry Ann. Bettyg Posted by bettyg (Member # 6147) on :
quote:Originally posted by Ann-OH:
Betty did you mean to say Iowa has 16? Ohio has 45 of 469 signers! [quote] As of now, 9-1-06, Ohio has 16. Let's see you top that!!! end of ANN'S quote .......
There is a space on the signing form where one puts in the State.
Ann, no, that was YOUR quoe on your 1st count after issuing the challenge to everyone else; I know it's confusing. Way to go Ohio & Calif. Bettyg Posted by sofy (Member # 5721) on :
My barely functioning brain is paranoid and I suspect others are too.
The thought of putting my name, address etc on the internet is just too high of a fence for me to climb. This must be why others havnt signed too.
I also have lost faith in docs & gov as a source of help so whats the pooint.
It was the docs & the government who said it was ok for me to have the lymerix vaccine. Now they are too busy protecting themselves to care about the likes of me.
Posted by kam (Member # 3410) on :
I think it is good to see all the names and get an idea of how many of us are battling this.
I am guessing there are at least 4,000 lyme patients in CA alone.
This is not counting all the people I run into who know someone who has had lyme and is fine now due to long term abx treatment.
Posted by bettyg (Member # 6147) on :
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 Posted by sometimesdilly (Member # 9982) on :
Hmm,
who knows, maybe Maryland will be the upset winner, let us see. Just emailed petition to many contacts, some with pretty large networks of politically involved folks...
Go go Maryland...
Julie
Posted by sometimesdilly (Member # 9982) on :
Just a thought-
has anyone forwarded info about this petition to every state support group linked to Lymenet?
I'd be happy to do so if that has not been done!
Julie
Posted by sometimesdilly (Member # 9982) on :
Thanks, Cave.
Another idea for wider distribution is to get in contact with neighborhood associations, organizations, etc.
For example, my neighborhood has a weekly online email update that is sent to over 100 households. I'm asking to have a link to the petition inserted into next week's edition. And, to accompany the link, I've written a small intro that also serves the purpose of helping to educate my community about lyme.
I used to be a grass roots organizer, and I know from experience that petitions can be a WONDERFUL way of educating/beginning a dialog that goes farbeyond what is on the petition itself.
Cheers-
Dilly today
Posted by sometimesdilly (Member # 9982) on :
Hmm. Overconfidence can be a dangerous thing, Cave.
This race is just getting going. Little 'ole MD had 23 sigs last I counted several hours ago, and we haven't even put our running shoes on, much less begun to warm up.
dilly
Posted by sometimesdilly (Member # 9982) on :
Cave-
And I'll adopt CA, since I lived there from age >1 til I was 7 and still love the place.
Dilly
Posted by bettyg (Member # 6147) on :
1 3 4 7 new total 1152 pm, 9-10-06
Posted by bettyg (Member # 6147) on :
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
[ 13. September 2006, 02:15 PM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
1 6 8 9, 9-13, 148 am
Bettyg Posted by bettyg (Member # 6147) on :
1 9 3 9 on 9=14, 235 AM
Bettyg
[ 15. September 2006, 02:06 AM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
2 1 1 2 on 9-15 at 116 am!
Bettyg Posted by bettyg (Member # 6147) on :
2 2 3 7 on 9-15 at 1142 pm 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 Posted by bettyg (Member # 6147) on :
2 2 8 2, 9=16 at midnight! Bettyg
Posted by bettyg (Member # 6147) on :
2 3 4 3 on 9-18 at 142 am Bettyg Posted by bettyg (Member # 6147) on :
2 4 7 6
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 Posted by bettyg (Member # 6147) on :
Many impassioned comments on here now! Bettyg Posted by bettyg (Member # 6147) on :
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
[ 24. September 2006, 02:31 PM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
up
Posted by bettyg (Member # 6147) on :
deleted by Bettyg
[ 25. September 2006, 04:10 PM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
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! Posted by bettyg (Member # 6147) on :
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 Posted by bettyg (Member # 6147) on :
3 4 6 9, and as Lawrence Welk would say, "WUNERFUL, WUNDERFUL"!
New Jersey folks are really joining in for big numbers from their state. Bettyg Posted by bettyg (Member # 6147) on :
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
[ 29. September 2006, 02:38 AM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
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 Posted by bettyg (Member # 6147) on :
3 7 1 2 another 100 since I was last year.
Very touching comments by NC Dr's J! WOW NC really had the numbers tonight on here! Go NC! Bettyg Posted by on :
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