Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Please share this with everyone you know!
CALL TO ACTION
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
``Crime against Lyme''
October 9, 2006 is a sad day for humanity and, in particular, for the Lyme community. That day, a group of people entrusted with the lives of patients published a document which commits those same patients to lifelong debilitation and suffering ─an action beyond rational comprehension.
For those now adversely affected, it seems as though they have won, and we have lost. Appearances can be deceiving.
There is a law in physics which states: for all action, there is an opposite and equal reaction. Not recommending ─effectively banning─ clinical discretion and classes of drugs, alternative treatments, and even supplements for any manifestation of Lyme disease is an action so reprehensible that it already has precipitated the plan for that opposite and equal reaction.
Lyme leaders across the nation have been teleconferencing and meeting almost non-stop to develop an action plan. That plan is designed to show the world that Lyme patients are not victims, Lyme patients are not helpless, Lyme patients are not incapable of fighting back. The plan is predicated on the fact that justice must be served.
We have pulled together a team of experts, and Lyme groups nationwide have been uniting so that the actions that are taken will be unified and focused. We have apprised appropriate constituencies of our actions and will continue to as actions unfold
As you know, it would be inappropriate to discuss all actions publicly at this time. We will, however, be letting you know each time an action is needed, and many will be needed. We need everyone's help. This is not the time to bicker amongst ourselves about who knows what when, but it is the time to network amongst ourselves about who can do what when.
Some of the actions we propose will require more effort on your part. When that happens, we trust that those of you who are able will support such actions. Other actions may require a lesser effort but might need greater numbers. All should be able to participate to make this campaign successful.
Because so many are ill, we ask that groups out there keep your own group initiatives limited so that patients won't have to make a choice. A lot of people have good ideas, but fragmented actions do not have a large impact─ 20 small petitions, for example, do not have the same effect as one large one.
We think the choice needs to be the nationally coordinated campaign, because the chances of success will be greater if we are all working together. Additionally, some groups may take actions inadvertently which may endanger other actions already begun nationally.
There are some localized actions you can take, however. If you are not in a group and none operates near you, join an online group, or you can take most actions as an individual. If you have a group, mobilize:
actively recruit people for your group update your contact lists (telephone, fax, email):
all newspapers in your group area (include weeklies), radio, TV
all reporters you have established a relationship with over time
all federal legislators in your state, both US House and US Senate,
your state officials in both houses, your governor,
your group members with note in which congressional and state districts they reside
write letters to the editor in your local papers describing how guidelines affect you/family
Send to your entire address book, as I have to mine. Get family members, friends, and co-workers, ask them to circulate it among their lists. Who would oppose a petition asking for Lyme patients to be accorded the most basic of human rights, given even to our enemies, the right to be treated when sick?
Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity.
LDA never sells names or shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like you, LDA is all patients and families of patients ─ and all volunteer.
The Lyme treatment gatekeepers have never been really challenged. That is about to change, and we will all be a part of that challenge. It will require courage, compassion, intelligence, endurance and effort on the part of our community, but I know we can accomplish great things together.
We must, because our lives and those of our families and friends are at stake now. Five years without treatment is not an option. We must and will prevail.
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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bettyg
Unregistered
posted
To those I sent tonight/early am 11-9-06, please go to the post BELOW this one for correct link for IOWA'S STATE SENATORS/HOUSE OF REP EMAILS! I screwed up royally! Sorry...BG
While we are all waiting for Tincup to tell us SPECIFICALLY what we are to send to congress and our own state's legislative members, I would like to suggest you start this process:
I have YAHOO and can send a LIMITED amount of GROUP LIST names; ONE PER HOUR .
So I started making 4 separate emails with the lists:
REMEMBER, you want to show their names in BCC, blind carbon copy so ENTIRE list of folks do not show up on emails ok !
PS -- if you want a list for yourself who they go to, do a block/copy of the list sent shown AFTER it goes; we all get these every day. I print them out ONLY if I want to keep track of WHO I sent to in a LARGE CONGRESSIONAL MAILING like this !
1...state senators; 100 in Iowa will go on ONE email; SEND IT TO YOURSELF. SAVE IT IN DRAFT FORM.
2. state reps; will be needed to be 2 or 3 separate emails; so I did a block/copy of the 1st HALF of names on one email. SEND IT TO YOURSELF. SAVE IT IN DRAFT FORM.[/B
Next email will show the NEXT half of them until you are done doing this. [B]SEND IT TO YOURSELF. SAVE IT IN DRAFT FORM.
3. now do your FEDERAL SENATORS AND REPS together for those with DIRECT email shown. SEND IT TO YOURSELF. SAVE IT IN DRAFT FORM.[B]
4. [B]rest of FEDERAL folks will have to be sent to their FORM LETTER thing individually ! Thank God there aren't that many in Iowa with FORM vs. direct email!
So these are the last minute things and you can't do anything until LAST MINUTE...no putting these in DRAFT!
Also, in the WEE morning hours when I was doing this, by saving them in DRAFT now; you will come across any mistakes anywhere where they for some UNKNOWN reason did not copy the entire list you wanted!
In my case, I think 1 or MORE ARE GONE for IOWA'S STATE HOUSE REPS, but their email addresses are still showing up.
Example, I copied 50-75 names and only TWO of them showed up! so trying to figure out who is gone and DELETE their email since it's affecting my FUTURE mailing.
I hope these instructions will help make it easier for you to do what Pat Smith/other VIPS are asking of us all!
ps - if you come across DRAFT errors showing up like I stated above with only 2 or more names showing and NOT ALL YOU BLOCK COPIED, work on fixing the problem now.
If YOU created your STATE'S list of federa/state senators/reps emails, please change them promptly in the ACTIVISM post on 50 state list by TINCUP.
If you did NOT create your state's email listing shown in activism, please send a PM, private message to the person who did your state. Click on the 2 people talking icon .
Tell them which names you had problems on. ******************************************
For myself, on those I come with WRONG ADDRESS/THEY HAVE LEFT THE GOVT., I plan on DELETING their emails from the IOWA list found in activism .
posted
To BettyG's folks I emailed our petition tonight to sign for the 50,000 people, etc.,
the below is the CORRECT address IF you want to email IOWA'S STATE SENATORS/REPS!
Sorry I misposted the above link, so showing this here in case any of you need this! I've got to many links going and can't keep track of anything right now. My apology for any inconvenience.
posted
Ok I may be wrong about this but a few years ago I listened to a radio station where a secretary to one of the senators stated that only snail mail and faxes will be read. Emails will not be read because they're not "official." The emails will be deleted and never read. I think our best bet to be heard is to send out or fax letters with our signatures on them. I'm curious though, has anyone contacted their senators via email and gotten an official response back from them? If so, then email may actually be read. I have contacted my senators via snail mail in the past regarding something else and received an official letter in the mail from them letting me know that they did read my letter and what actions, if any that were going to be taken. My hope is that emails are being read because it is faster and easier to do.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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bettyg
Unregistered
posted
pie, I answered your one but short and sweet...
YES, I have received 3-4 emails back from IOWA'S TOM HARKIN IN DC; 1 within 24 HOURS OF MY SENDING IT!
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I would think the emails would be preferred, given all the threats they have had with chemical and biological substances mailed in the past.
I think I may try from both sides, and see what happens.
Posts: 2903 | From AZ | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good news!
We've almost double the number of signatures we have in the past 12 days!
We are up past 14,000 now!
Keep up the good work! We are trying to reach 50,000 and don't have a lot of time left!
As for the emails vs fax vs phone.
It wouldn't hurt my feelings if you did all three!
But yes.. emails are being answered by those who take time to respond. And they are being read from what I've been told... and are actually preferred due to the terrorists stuff.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hey, if you do what I did, you can get to 5000 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.
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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