[ 06. November 2006, 05:57 PM: Message edited by: Tincup ]
Posted by Tincup (Member # 5829) on :
OH NO! I just went back to see the final count for the night.. and it has dropped to ZERO!!!
WHAT happened?
Anyone?
Posted by Melanie Reber (Member # 3707) on :
Hey Moon-Pie,
It looks to me as if there is some reformatting gong on there.
Hopefully, it will be resolved soon!
How be ya, Big Baboon?
Posted by Robin123 (Member # 9197) on :
I saw the count about an hour ago -- it was somewhere in the 9000s --
Posted by hurtingramma (Member # 7770) on :
I just checked -7:00 a.m. Friday - if you go back to the beginning, it says 9595 signatures - we need to keep them coming!
Posted by Areneli (Member # 6740) on :
Obviously we cannot do it on our own. There are simply not enough of us connected to this site or other Lyme 'real or virtual' organisations. Even countin our loving family and friends. We cannot do it without wide help from general media.
Posted by sometimesdilly (Member # 9982) on :
One plan for moving those numbers up.....
Beginning next week, a few of us are going to "massmail" the first of some very targeted audiences.
Anyone else want to join this effort?
Next week the following message goes out to every pregnancy/mothering forum and chat group in the US-
-a brief personalized message: I am a mom with a lyme, my child has lyme, i was pregnant with lyme....
- we don't want this to happen to you or to your child...here are a FEW links to help you prevent that from happening, how to recognize symptoms in your children, ......etc.
and also, if you have a moment, will you please sign these two non-partisan petitions- one in support of additional lyme studies, and the other (for LDA)?
Just one of those mothering forums- one I used to frequent a great deal as a new mommy- now has OVER 10,000 ACTIVE MEMBERS.
Lots of potential for meeting short term goals and building longer term alliances. Moms care.
10,622 now
Posted by Nancy-FL (Member # 7986) on :
10687 at this time. (10:45 a.m. Nov. 5)
Just a suggestion, think about all of the organizations and groups that you have ever been a part of. Contact those people and ask them to sign the petition.
I just sent requests for signing to my soroity and my husband's fraternity alumnae groups. These are people who stay in touch with one another, but we have not seen them for years. They did not even know that my husband had been infected and treated for Lyme, but the response has been great.
Reach out to people in other countries. Our daughter lives in Sweden. She has received it and sent it out to many in a prayer group there who have been praying for my husband. Since it asks for "country" on the petition, and the Canadian Lyme Disease Foundation is now in support of the LDA and ILADS on the issue, this is certainly global, and we need to get the word out around the world.
Come on folks, by working together and giving ideas that we have here, we can do this!
Posted by Areneli (Member # 6740) on :
It is definitely global. Evil face of IDSA is going to affect every Lymie on this planet. But the majority of work has to be done here by American patients as America is the land were the beast sleeps.
Posted by Tincup (Member # 5829) on :
Grrrrrrrrrrr...
Mine keeps saying ZERO! I even more so appreciate your keeping the figures posted!
Good ideas Nancy in FL! It may be the only way to get to the 50,000 we need!!!
Let's get 'er done!
Posted by sizzled (Member # 1357) on :
10,838
Unfortunately, you MUST HAVE an email address.
I know some elderly people who would gladly sign but they don't have email. Posted by sizzled (Member # 1357) on :
Up!
Posted by WildCondor (Member # 434) on :
Great job!
I think we should canvas neighborhoods and get the truth out plus signatures and permission to post them on the petition. I once got 10,000 signatures for a another cause. We should organize a canvas, mass mailing, educate the public...gain media attention too. We could get the 50,000 signatures, or 100,000 if each of us worked to get 1,000 on our own. if 100 of us each got 1,000..there you have it, get 200 of us, which is only a fraction of us, and its even easier. Each support group can have its own goal. Imagine if just 1 person from each state got 1,000 signatures. Now imagine only 10 from each state...we could get to a million and wake up the nation.
Never doubt that a small group of determined citizens can change the world. Its the only thing that ever has. Can the petition be made on paper and then combined with the online version? Something to the effect of "I consent to having my name and address included into the online petition" with their signature.
Ok, let me know. Email.
Posted by Melanie Reber (Member # 3707) on :
OK...
I just spent about 4 hours sending the below to every name in my address book!
(It sure is a good way to clean out old addresses )
Thanks for making this list so usable Moon-Pie!
***
My Dear friends,
Chronic Lyme disease patients, such as myself, that currently number in the hundreds of thousands are now being denied treatment for even basic healthcare.
It is a National disgrace, and one that I am hoping you will help us to overturn.
The spread of Lyme disease and other associated tickborne infections have now surpassed even AIDS in epidemic proportions...and the numbers continue to multiply exponentially. And even more heart-breaking, also like AIDS, our patients, our families, our friends, are so very sick and many are dying.
We, as a whole, are working furiously to stop this crisis in its tracks. But, there are powerful political and insurance forces behind the act of keeping these facts buried.
We need to speak up in protest and we need to do it now before one more life is lost or destroyed by the continued prevalence of widely dispersed and believed false information.
The facts of a newly adopted guideline, written by the Infectious Disease Society of America and used by the Centers of Disease Control and other misguided healthcare providers, are lined out below. The link to a National petition that will be used to make our voices heard is also given. This petition has already been signed by over 10,000 who have been persoanlly affected by these newly adopted dangerous guidelines.
Please, take a few moments of your day today to make a difference in the lives of the many who have already been, and continue to be affected by this purposeful spread of false information.
Your name and personal information will NOT be used for any other purpose but to verify the authenticity of your signature.
Also, please feel free to pass this message along to others who you think will be willing to speak out with us.
I thank you so sincerely on behalf of myself and so many others in my same position.
My best, Melanie
(please forgive me if this has already come accross your email, and thank you for joining forces with us!)
According to the recently released IDSA (Infectious Disease Society of America) guidelines, in order to be diagnosed and treated for Lyme disease you must fit into the category below.
1. Live in an endemic area and be bitten by a nymph or adult I. scapularis tick that has been attached for at least 36 hours. The tick must be examined by your physician to determine the species and the level of engorgement.
2. Have a physician documented bulls-eye rash of a specific size and/or 2 positive blood tests after a tick exposure and symptoms have appeared.
3. If you don't have a rash or your initial blood tests are negative, you will have to wait until you have severe, measurable damage to one or more organ systems, along with a set of subsequent positive blood tests before being diagnosed and prescribed treatment.
4. If your treatment isn't adequate and you relapse you will only be provided symptomatic relief from drugs that are not able to address the ongoing infections.
5. Vitamins, supplements or other treatment options are not recommended.
If you are a physician in an endemic area who may have patients exposed to Lyme disease, according to the IDSA guidelines you will:
1. Become experts in tick identification in order to determine the species of tick involved and only consider bites from nymph or adult I. scapularis or Ixodes pacificus ticks.
2. Be able to determine the level of tick engorgement.
3. Keep abreast of the latest studies concerning the percentage rates of infected ticks in your area, if their are any statistics available, as the infection rate must be above 20 percent before being considered a risk factor for contracting Lyme.
4. Be able to determine exactly when the tick attached itself to the patient, as the one dose of antibiotic allowed must be given within a certain number of hours from the time of exposure, or not given at all.
5. Limit treatment for patients presenting with heart block, brain swelling, neurological deficits and severe arthritis to the same dose and duration of antibiotics which are prescribed for patients with the early flu-like symptoms.
6. Not depend on a patients description of when they were bitten by a tick because a "patient's own estimate of the duration of attachment is unreliable".
7. Not treat pregnant women for early exposure to Lyme disease.
8. Not recommend tick testing to patients in order to determine if the tick that bit them was carrying diseases.
9. Not treat patients who have negative blood tests in spite of ongoing Lyme disease symptoms for 6-8 weeks and only pursue other potential diagnoses.
10. Not use the more specific blood tests (PCR-DNA) due to the additional cost involved.
11. Use antibiotics that are the most cost-effective rather than the more expensive ones, even if the cheaper ones fail to do the job.
12. Not recommend additional therapies or nutritional supplements for patients who remain ill.
13. Stop treatment at the arbitrary cut-off point even if the patient is recovering but hasn't fully recovered.
14. If patients relapse after the short course of antibiotics, they are to be treated only for their various symptoms. Treatment for ongoing infection is not recommended.
Posted by Areneli (Member # 6740) on :
We collect between 300 to 1500 signatures per day but only 600 signatures per day on avarage. The calculation is based on all 18 days the petition is up. Assuming that this 600 per day is going to stay on the same level realistically we may have 50000 signatures in 84 days total (from the begigning of the petition) that is on January 10th 2007.
Posted by ldfighter (Member # 9405) on :
quote:Unfortunately, you MUST HAVE an email address.
I know some elderly people who would gladly sign but they don't have email.
Here's an idea...
How about offering to set up a free hotmail/yahoo/gmail etc. email account for them? I did this for someone so that their signature could be added to the petition. (They'll probably never use the email account.)
Posted by Melanie Reber (Member # 3707) on :
11,000!!! Posted by Nancy-FL (Member # 7986) on :
I just happened to think about something that I read many years ago that got me through a crisis then, and maybe we could all use it now.
It is a quote, with which many of you may be familar. Edmond Burke wrote, "The only thing necesary for the triumph of evil is for good men to do nothing." This is not to imply that there are some who are doing nothing, but maybe we can all do more. We all know the evil that can come of all of this if we don't all work our ?&%#s off. Go for it!
[ 06. November 2006, 02:11 AM: Message edited by: Nancy-FL ]
Posted by seibertneurolyme (Member # 6416) on :
sizzled,
Yahoo offers free email addresses. Maybe you can point others in that direction. Can go to any public library and the librarian should be able to help someone get a free email address with yahoo. Address will stay active for 6 months I think even if no activity. Can be reactivated even after that.
Good idea about contacting former orgs/groups you were involved in when we had a "normal" life!
Also, when I did another petition like this, we had a maximum limit of 25 names that could be sent from ONE email address; that would work on your older folks you posted about Sizzle.
Posted by sizzled (Member # 1357) on :
Thank-you all for the helpful ideas around the email address!!!
Posted by KENNEDY (Member # 9628) on :
I'm not sure why, when I clicked on Tin Cup's post to see how many signed the petition it showed 0.
but when I clicked on Melanies, it show 11,116.
Someone earlier in another post about the petition had asked if there was a way we could view the
signatures of who signed it, like in the other petition going around.I guess it was just not set up like that.
But I like checking to see which of the people that I sent e-mails out to actually did sign it.
I betcha I can predict the ones who will and the ones who won't.
There are some I can tell that although they care how I'm feeling, but....... if I start talking about Lyme at all to them, they hear me, kinda, but they really aren't listening.
I guess there's always going to be the people that don't think it's going to happen to them.
The real problem I have with that is, 2 of these people are my 2 daughter-in-laws,
and between the 2 of them they have 4 of my 5 Granchildren and both families live in wooded areas with the wildlife right outside their backdoors.
I DO NOT want anyone at all to have to deal with this disease, much less my babies. It would break my heart.
I read all the time, as all of you do, about whole families dealing with this. It breaks my heart.
I would gladly............gladly make a deal with the devil, to never ever be cured or have the chance to be, to save my Grandbabies and all kids from having to go through this.
Sorry........................ to go on and on. But it is so heartbreaking.
I thank every one of you on this forum for tire-less-ly giving of your time and support to everyone, everyday.
Posted by Areneli (Member # 6740) on :
Collection of signatures is going too slow. I am as unhappy about it as everybody else. Target of 50000 at the end of November is unlikely without a major miracle. Petition in January or February will have a weaker impact than a petition in this November. But how many people do visit Lymenet or LDA website on regular basis? Possibly only 2000 or so; perhaps even less. Most people can offer their own signature plus sometimes a few more. That is not enough.
Let me remind you that there are about 300 LLMDs in the US that are associated through ILADS. Assuming that each of them has on average 120 Lyme patients we have access through them to 300*120=36000 (thirty six thousands of patients).
Can ILADS help in distribution an electronic flyer about the petition to all LLMD clinics?
[ 06. November 2006, 10:07 AM: Message edited by: Areneli ]
Posted by Mo (Member # 2863) on :
how about the support groups on a local level - each of them could be sure the petition alert is in all the LLMD offices as well?
i recall someone here had a 'hub' or master list of support group leaders.
mo
Posted by dontlikeliver (Member # 4749) on :
Areneli, that is a great idea.
I wonder if at ALL LLMDs offices there could be a PAPER PETITION for people to sign as they are paying/checking in, etc, which can then be added to the online petition.
I am out of the country, so it is not practical for me to print it out and bring to shops myself, but perhaps other can bring paper versions of the petition to places that people can sign, that can then be added to the LDA online version, in places like bookstores, grocery stores, gas stations, libraries, state parks, etc etc etc....It would just be a laminated printout of the LDA statement about petition, alongside lots of pages of lined paper to sign name, address, etc.
Posted by sometimesdilly (Member # 9982) on :
Thanks for the encouraging feedback, Bea!
It sounds like folks here are reaching agreement that we should reach way beyond the immediate Lyme community to meet (and likely exceed) the goals of the Guidelines Retraction Rally "GRR".
Has anyone contacted Pat Smith about Wild Condor's idea to extend the petition to paper for broader reach? Can't imagine why that wouldn't be OK, but it would be nice to have the official say so.
And what a good idea, Areneoli, about the petition through LLMD's offices. I had to pull out my calculator to do the multipication- 36,000 seemed like an awful lot of people to be under the care of such a small handful of LLMD's. But then, that's partly the point, eh?
This kind of brainstorming about where to take the fight is great!
Dilly (GRRing in Maryland)
Posted by Etta (Member # 1002) on :
I'm in so much pain, I can't focus to feed the dogs. Minocycline, Doxycycline, Amoxicillian, Flagyl, Tetracycline, Cipro, Levequin,Ceftatrioxone,Mepron,Zythro; regimens of these with little or no help. I only know they've kept me and Zeeke alive and somewhat functional for short durations of time. Add 2 more to the sign-in list.
Posted by Nancy-FL (Member # 7986) on :
Etta,
Thanks for your note and for signing. We all understand. Take care of yourself and Zeeke, and we will keep this ball rolling for you and so many others like you. That's what this is all about.
Posted by lou (Member # 81) on :
How about asking your local paper to print a letter to the editor about the petition? I am thinking here about endemic areas to whom lyme is not a new subject. This will probably only work for smaller papers, the big city guys won't do it is my guess.
Posted by Tincup (Member # 5829) on :
What about the count? I STILL can't see it!
How many now??
Tell me, tell me!!!!
ABOUT PAPER COPIES- YES!
Tomorrow we are taking paper copies of the petition to voting places to see if we can meet some of the legislators who will be there polly ticking... give them our speach about the new guidelines... and also get voters to sign as they head into the polls.
This serves several purposes.. as it will give us great exposure... will let everyone know others are working for them.. and get the word out to voters and polly-ticians about the problems we are having.
How to do PAPER COPIES:
I printed out the petition on a sheet of paper.. made a section underneath with the wording for Name, Address, Email, Signature- on it.
Then I made a bunch of lines where folks can sign... then made 2 extra pages of lines.. making 3 pages total.
Last week I took the sets of 3 pages each (stapled together) and dropped them off at local businesses. I think that was on Thursday afternoon.
Today I picked some up as I was doing errands.. from 2 places I think (but had them out in about 15 places total).
And I had about two full pages of names which I will enter into the computer tonight...one at a time.. and then send the hard copies to the LDA... as required, if done this way.
So please do make up a paper version.. and get as many signatures as you can! Be SURE to enter them into the computer one at a time.. and if no email address is listed.. use your own.
Then mail the comleted paper copies to the LDA after they are entered... for proof of signatures.
I am taking a little wooden table with some Lyme green decorations (ribbons, paper, hand towels, etc).. just to be noticed.. and several sets of the paper petition.. and a sign saying to HELP LYME DISEASE PATIENTS.. or something to that effect. And LOTS of ink pens!
Also giving out brochues and handouts.. whatever I happen to have here.
Wish us luck! And hope it doesn't rain!!!
Posted by Tincup (Member # 5829) on :
oh.. lou.. you'll like this.
See my next post about the letters folks here wrote. It is amazing!
Posted by ldfighter (Member # 9405) on :
11,605!
Posted by WildCondor (Member # 434) on :
Thanks Tincup, I wasn't sure if we could do a paper petition. I'm going to do the same thing and help people with emails. Posted by Tincup (Member # 5829) on :
Well Kennedy.. you are abslutely right!
I click on the link I posted.. and see ZERO.
So I tried Melanie's post.. and it was about 11,600??
I'll re-do the link.. here and on the original post... maybe it expired.. or something?
Wow, you guys have come up with some terrific ideas! I've been racking my brain over this. My big question, though, is:
WHERE are all the Lymies? It seems like there should be 10,000 online Lymies in Connecticut and New Jersey alone!!
The only other thing I can think of is to use the TELEPHONE.
Every one of us probably knows at least 5 supportive people who don't have computers that would consent to us putting their names on the Petition (via our own computers).
So, let's pick up the phone and call them. Just be sure you get the correct spelling of their name, and all the other info needed on the Petition. Even better if those names could be entered on a computer at the public library.
As mentioned before, we don't want too many names generating from any one computer.
That's my brainstorm for the day.
**11,671**
at the moment.
Tracy
Posted by bettyg (Member # 6147) on :
Be sure to have enough room for EMAIL address and ask them to PRINT IT ~
For those lucky enough to have a laptop, take it with you to set up outside the polls like TC mentioned.
For those of you going to Dr. Jones last hearing coming up, TAKE A LAPTOP, GET AS MANY SIGNATURES AS YOU CAN THAT DAY from those who haven't signed up and those walking by !
Would a local library allow you to set up inside having a table w/lyme brochures and your laptop where you can get more signatures/signing on laptop or THEIR pcs.
Thanksgiving is coming; are ALL YOUR RELATIVES/FRIENDS signed up yet?
Let's keep this rolling; WE CAN DO IT!
Dr. Jones had 10,000 kids treated; yes, that's right....you have to be 18 to sign! darn..... Bettyg Posted by Tincup (Member # 5829) on :
OK.. keep in mind..
You can enter the peoples names as long as you have their signature on the paper copy.. AND send it to the LDA office for their file to be verified.
You can use YOUR email address as often as needed for those names.. as long as you have the paper copy... and like I said.. send it to the LDA after you enter the persons information.
Another thought.... about taking a lap top that was mentioned above. Sounded good at first.. but...
I am not sure.. have NO idea actually.. but could that be a problem with the newer voting machines around?
And you would still need the persons signature on the paper work anyway. Would it be better to just focus on paper petitions.. then go home and relax and enter the names later?
Now.. some of you may have been born with a laptop on the end of your arm... unlike me.. but I would think it easier for the rest of us to focus on the paper copies... and speak all about Lyme and the IDSA etc.. without the computer being there? Cause you WILL have a lot of talking to do to get signatures. I've run into that already just around town.
Just something to consider.
You also may want to spend that laptop time on talking to any legislators who show up to kiss babies and stuff?
Plus.. hear this.
If it rains.. I will have to go to plan B. I love you guys.. but I will not sit in the rain in 50 degree weather all day for a signature on what I would then term to be a STUPID petition! HA!
I mean HEY! If I won't sit in the rain in 50 degree weather to get tickets to a Jimmy Buffett concert.. I am cetainly not going to do it for a STUPID petition!!!
OH.. I just thought of what Plan B could be!
One of our little polling places serves a hot meal inside each year, when we vote.
Soooooooooooooooooooo.. you will find me there! With petition in hand.
Posted by Tincup (Member # 5829) on :
Interesting too..
I dropped off the petitions in a variety of places late last week. I only was able to go back to a few today.. but..
I thought it interesting the place I had the most signatures from was the liquor store!
Now they DID have it sitting on the counter where folks HAD to see it when they went to pay. So maybe that is why? It is an older more established place too. It also serves good subs. So who knows? I just thought that a bit weird perhaps?
And the bank pulled the old... You can leave it here and we will check with the manager but if she doesn't want to do it.. she will throw it away. I told them forget it.. I was paying for that copying out of my pocket and waste not .. want not! I left with it.
The library also was snitty about it.. and also asked if the health department approved it?
HA!
I told them NO.. they actually are stupid enough to WANT the IDSA guidelines!
THEN I remebered the womans husband worked for the health department!
Oh well... ya can't win them all!
Posted by Tincup (Member # 5829) on :
11,856
At 2 A.M. on Tuesday morning!
We are headed in the right direction!!!
Posted by Tincup (Member # 5829) on :
We hit 12,000!
Actual number 12,304 ... at 8 P.M. on Tuesday night.. election day!
I went to the polls today.. with my truck covered in purple poop... thanks to my bird friends.. and I got rained out...
But I did get about 85 signatures to add to the list before the rain hit.
BUT...
NOW I get to type them all in on the site.. one by one!
Posted by bettyg (Member # 6147) on :
12,467 now! I was going to experiment and it accepted MY name etc. without telling me it was a duplicate!
Wanted to see if you could use the back space and NOT to have to type in your personal email addy TC. NOPE. goes back to complete blank screen w/petition. Posted by Melanie Reber (Member # 3707) on :
12,995!!! Posted by Tincup (Member # 5829) on :
13,269
Thursday 4 PM
Let's keep them coming!
[ 10. November 2006, 01:17 AM: Message edited by: Tincup ]
Posted by Tincup (Member # 5829) on :
FRIDAY morning.. 1:20 A.M.
13,424
Posted by bettyg (Member # 6147) on :
14.343 now
Posted by trueblue (Member # 7348) on :
I see 13,665
Posted by Tincup (Member # 5829) on :
I see 13,704
BettyG... got yer goggles on?
Posted by Tracy9 (Member # 7521) on :
!!!!!!!!!!
13,722 11-11-06
Posted by bettyg (Member # 6147) on :
TC, you bet I do and my memory is as bad as my eye sight! Sorry; but got you all to check, didn't I? lol Posted by Tincup (Member # 5829) on :
By golly she did!
Funny BettyG.. real funny!
Posted by trueblue (Member # 7348) on :
13808
Posted by Tincup (Member # 5829) on :
Looks like it is slowing down!
Can you email others to sign up? And re-mail those you already have sent it to... to see if they followed through.
Maybe type in your local city or county's name in a search engine and flip through sites and see what email addresses you can find. Then make it personal to them...
Example..
Dear State Park..
Since your employees are exposed to ticks.. and your doctors ability to treat Lyme disease has just been drastically restricted, please help those with Lyme disease make a difference and sign the petition here:
List site address here
Thank you,
Your name
Total 13,874
Posted by bettyg (Member # 6147) on :
TC, could you add LDA special petition site name to your signature line until Nov. 30? I always have to go way up to find it, and I'm sure others do too ... a real timesaver! Thanks my ice cream friend! Posted by Tincup (Member # 5829) on :
BettyG..
Sorry... Not changing names this time. But...
We'll try to keep it closer to the top so you can find it easier.. ok?
We've hit 14,000!
Total.. 14,086
Keep them coming!
Posted by Mo (Member # 2863) on :
if everyone who has signed, got four others to do so, we'd break the bank in one week.
just to give some perspective.
or -- if 2000 people got 18 folks to sign ..
but i know there are more than 2000 folks working on this..
R I G H T ???!
i think everyone needs to put in time on this one.
ideas - circulate flyer with website to schools, get it to the teachers, if you have an in with any working group who will advocate for the petition - you can often generate lots of signitures.
bring it to college campus libraries, ask your church if you can get it in the bulletins - be creative.
put the link on other online groups, mailing lists, ect.
MAKE SURE your LLMD's office has good notice/flyers ready for patients in plain view. ask the receptionist if she would help remind patients of the action.
chiropractors and alternative medicine docs are clued in on the plight of Lyme patients - put it there.
ask your libraries if you can post the action and link near the internet station - the possibilities are endless.
Mo
Posted by trueblue (Member # 7348) on :
14,417 as of just now.
Posted by kelmo (Member # 8797) on :
how can you see the total? I can't get beyond the signature page?
Edited two minutes later: NEVERMIND
Posted by bettyg (Member # 6147) on :
14467
Posted by Ann-OH (Member # 2020) on :
Hey, if you do what I did, you can get to 50,000 easy.
I thought I had signed the petition, but with my Lyme brain, I thought maybe I hadn't. I figured if I signed again, the petition would just reject me. So I signed. And got thanked.
Still thinking I really HAD signed earlier, I decided to give it another go, just to see if it would now reject me. I signed. And got thanks.
That didn't exactly make me feel good, but there is no way to erase my signature. So now there is a good chance I signed 3 times.
The total number went up each time. It is a good petition and I am glad I signed it, but not three times!
This doesn't exactly increase my faith in this petition's accuracy.
Ann - OH
[ 15. November 2006, 03:16 PM: Message edited by: Ann-OH ]
Posted by Areneli (Member # 6740) on :
At final stage these kind of signatures may be removed together with others that contain errors are result of jokes, come clearly from children etc.
The total number will drop somehow, of course.
[ 16. November 2006, 09:24 AM: Message edited by: Areneli ]
Posted by bettyg (Member # 6147) on :
14738
Posted by Areneli (Member # 6740) on :
Slow results with the petition tell me that our movement is still very weak and we may loose the war for several more years.
International, worldwide effort with this petition and hardly 15000 signatures?
Posted by TNhayley (Member # 8249) on :
Another idea is to take flyers and a paper petition to all local Veterinarian's offices. At least THEY know about Lyme, so pet owners may be very sympathetic.
This may be a particularly good idea in places that are not clearly "endemic" ... like the SE, etc.
H
Posted by Tincup (Member # 5829) on :
Yo HO Areneli ..
You seem so down on all the effots? Why aren't you a happy camper?
And hey.. good idea about putting them in vets offices!!!
I am piping in a little late on this, but Melanie I hope you do not mind I sent out a copy of your letter without your name for your privacy to everyone in my address book.
Also I posted a Bulletin on My Space telling them about it all, and asked for people to sign the petition.
I hope My Friends ( I have 150) will pass it on to their Friends and on and on.
We do what we can. Blessings & light.
Yemaya Posted by bettyg (Member # 6147) on :
TC, I took the petition printed out along with 2 sheets each to where I used to work TODAY; state agency. 1,000 on site! Hopefully I can get a couple of hundred before Nov. 30. I'll pick up 10 sites of petitions. Posted by Tincup (Member # 5829) on :
Yem.. GREAT idea!!! And from your neck of the woods.. that will help a lot!
Thanks!!!
Now if the LDA site would stay up long enough we could type them all in on the petition... from the hard copy.. it would help!
Good going...
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Hey you.. little fireball.. BettyG.
You're burning them up.. ain't ya? Good work!!!
Let us hear back your final numbers! I need a smile!
And thanks!!
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How many?
After the site has been down all day.. we still have..
15,429
Posted by Mo (Member # 2863) on :
EXCELLENT!
we can get the names and addresses offsite (you need name, email addy, address, and phone), and enter them when it is working, or send the info to your local LDA support group leader if the hacking of the website gets so bad you can't get on it intermittantly.
you can get more names working offline than on anyway, better responses i would think when it's phone or in person.
mo
Posted by Mo (Member # 2863) on :
15,870.
we just have to do this roughly two and a half times over. we all know more people who A. need to know about this and B. would be happy to sign.
I made up paper petitions that are easy to print out and copy, just email me and I'll send it to you! [email protected] Posted by bettyg (Member # 6147) on :
26 more till 16,000 !! *******************
TC, I'll be happy to tell you how many folks I end up signing up locally at the 13 places I've left the petition PLUS A COPY OF THE POINTS OF IDSA'S GUIDELINES so they can see why we are "ticked" off!
One place I dropped off my list was at a LOCAL NURSING HOME where I go to visit each Friday! Look at ALL the folks you could get there alone! So give the NURSING HOMES some thought too.
Yes, I'll not be able to go to the NY rally, but I've rallying now in IOWA to get these numbers UP UP UP ON BOTH PETITIONS and writing newspapers.
I did get emails off to IOWA'S FEDERAL/STATE SENATORS $ HOUSE OF REPS! Worked out all the bugs and my computer is finally cooperating with me. I had my own IDSA duck here...pc! Posted by Tincup (Member # 5829) on :
Good, good, good!!!
And more good, good, good!
Thanks BettyG and all!
I still need to type in some of mine. With site up and down.. haven't had a chance! Late now.. headed to BED!
Posted by Mo (Member # 2863) on :
that's a great idea, betty.
nursing homes/assisted living communities.
they can have an interest in health matters, and have computers and assistance in organizing. lots of signatures available in one place.
same with college campuses - you can always find activists there!
I haven't had any trouble with this link, but I have the other one posted earlier in this thread.....
Somebody else please try it and see if it works.
Tracy
Posted by trueblue (Member # 7348) on :
The link works fine Tracy, thanks!
WC, I just emailed you, TIA!
Posted by Tincup (Member # 5829) on :
16,267
Posted by bettyg (Member # 6147) on :
1 6 , 2 6 9 ... 2 more than TC's earlier post 1/2 hr. ago!
yes, we can't get those under 18 like the 10,000 kids Dr. Jones treated, but we can get the ELDERLY in nursing homes, etc. whose MINDS are still good!
Can't remember if I put in there too, I left one at our LOCAL SENIOR CITIZEN'S CENTER where they get 50 - 100 folks there daily for LUNCH! Posted by Mo (Member # 2863) on :
yo, yo, yo ..
pick up the pace folks!
lots of ears can be bent over the holiday ..
and in my family: NO cranberry sauce unless you have SIGNED!!
strike while the website pages are up!
mo
Posted by bettyg (Member # 6147) on :
I just got done sending BOTH petitions to our local GARDEN CLUB PRESIDENT asking that she send it to those members locally as well as the STATE GC PRES. TO SEND TO "ALL" GARDEN CLUBS IN IOWA and also to the FEDERAL GC PRESIDENT to forward to all 50 states!
Also ask them to send to the MASTER GARDENERS TOO!
Do any of you belong to either a garden/master gardener's club? If yes, please send all this vital info to get the THOUSANDS GARDENING TO SIGN PETITIONS! Thanks lymies! Posted by Areneli (Member # 6740) on :
Did we cover forestry workers?
Perhaps somebody knows how to find them, as likely they are not on the Internet too often busy cutting trees.
Perhaps approaching trade unions may help. I think that 10% of these guys (Forestry workers) at least must have LD.
Posted by bettyg (Member # 6147) on :
1 6 4 4 1 , long ways to go!
arenelli, I sent you a PM on forestry workers! Posted by bettyg (Member # 6147) on :
up for the newbies I discussed this with earlier this am... Posted by hopingandpraying (Member # 9256) on :
How can people from oversease sign the petition (I have the petition website address)?
I have a friend here from Malta . He is originally from Illinois but has lived in Europe for many years.
Does he have to sign on from his own e-mail address or can I sign him on the petition if he gives me permission?
I may be able to get some more people signing if we can do this. Advise a.s.a.p. please. Thanks
Posted by bettyg (Member # 6147) on :
Hoping, my opinion is YES they can sign!
seems to me they show COUNTRY there also! so by all means, the MORE THE MERRIER! Boy, do we need numbers; little less than 34,000 !! Posted by ldfighter (Member # 9405) on :
16,931
Still desperately need more signatures! Keep passing around:
this is one petition that is an easy sell to sign.
while you are doing it, you are increasing awareness, understanding and respect for Lyme disease patients.
ask everyone you come across to sign.
mo
Posted by bettyg (Member # 6147) on :
1 7 , 4 9 0 now!
I just entered 41 names onto LDA's petition that took 50 minutes only! Amazed me...
Pat Smith shared this tip with me since I sent her an email about entering VOLUME nos. 11-30.
TIP: COPY YOUR PRIVATE EMAIL and paste it into EACH entry you type folks' names/address, etc. on ... really SAVED ME LOTS OF TIME! Posted by Lauri (Member # 10623) on :
Me, hubby & my mother just signed petition: Count is now at 17,595!
Posted by hopingandpraying (Member # 9256) on :
Just wanted to let everyone know I've contacted as many people that I know nationwide.
I asked that they sign the petition and pass on the request to all the people they can.
My cousin in California is very active in many organizations. She said she has three friends with "MASSSIVE" mailing lists. She was more than happy to help.
People have been very cooperative and understanding. We must fight the good fight!
"All that is necaessary for evil to triumph is that good people do NOTHING" Edmund Burke
Don't get discouraged - WE WILL WIN!!!!!!!!!!!!!! Posted by bettyg (Member # 6147) on :
1 7 , 6 6 2 YIPPEE; over 100 in 1 hr. earlier!! *******************************************
hoping and praying, WAY TO GO using your connections; and cousins 3 huge mailing lists!
were BOTH petition links on there I hope!! YES! you rock newbie!! ****************
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!
Posted by Tincup (Member # 5829) on :
Way to go Laurie and Hoping..
THANKS! That WILL help!!!
And I would like to share the fact that a lady I know (she is about 150 years old).. and a good friend of mine (or she WAS till I said THAT).. entered over 100 names tonight that were collected in Maryland. LOTS of work! It's hard to read those sheets.. and decipher them all.
I am happy she took time to do it with her busy schedule. But she is ALWAYS working hard for the cause behind the scenes. ALWAYS!!! I only wish I could do 1/2 of what she does.
Thanks my friend.
Posted by bettyg (Member # 6147) on :
5 0 7 9
tomorrow I will type in the 47 names I was able to get today from my former work place! Disappointed; 1,000 work there, and out of 5 offices getting copies of petition/sheet to sign, only got 9 fignatures PRIOR to my going door to door of former friends/co-workers!
2 didn't even post them anywhere after 1 week!
3 other businesses got none or LOST what I left them! This took me 4 long, hard hours on this body where I have to use a cain for my worn out hip.
Tincup, please give your friend who typed in 100 names on the ONE OR BOTH petitions this for me please! God bless you all!
Posted by bettyg (Member # 6147) on :
1 8 , 4 1 4 UP TO NOW! ************ **********
I just entered 62 names on LDA petition; tomorrow I'll add them to Lynne's also! Posted by bettyg (Member # 6147) on :
up reminder; we've got monumental work to do to get to 50,000 !!
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