PLEASE DISTRIBUTE TO EVERYONE. We are gonna kick BIG duck butt!
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.
Posted by trails (Member # 1620) on :
Posted by seibertneurolyme (Member # 6416) on :
All I can say is, "IT IS ABOUT TIME FOR A COORDINATED NATIONAL EFFORT!!!!!"
And please guys, no bickering -- the IDSA is out to stop both antibiotics AND alternative treatments.
Bea Seibert
Posted by 5dana8 (Member # 7935) on :
Oh Thank God.
Ditto seibertneurolyme- It's about time. I hope we can all make a difference. I agree it has to be a large action & not fragmented.
Thanks for posting this tincup!
Posted by Tincup (Member # 5829) on :
For those who want to share this info with local, sate and national parks in your area.. and electric companies, telephone companies, camp grounds, organizations, and friends who don't want all the yik yak...
I made this short version..
Please feel free to copy and paste and then mail, mail, mail!
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Can you help me and many others... and sign this petition? Please pass it along to all your friends in your email address book too! Thanks!
iowans -- go to my LAST POST on the 50 state project is CURRENT/VALID info.
LOOKING FOR HOPE'S INFO AT TOP FOR DC SNATORS/REPS is incorrect!
Brain fog, Are we to send a copy of PAT SMITH'S ENTIRE LETTER? I just do not get it right now .
REMINDER TO ALL SENDING CONGRES/HOME STATE LEGISLATORS, PUT THEIR NAMES IN THE BCC COLUMN so they do NOT receive this whole string of web sites on the 2nd pages ok ! Bettyg Posted by 8man12 (Member # 7664) on :
I'm begining to think all these emails we been sending out for the last ten years is what is getting us in so much trouble.IT CERTAINLY,hasn't done no good.Has it.All they do is click delete.Not 1 petition has gotten us anywhere,because where ever any has gained,they just got put back were they started from with the new guidlines.I would even doubt are lyme bills go through at all now.Just my two cents.Not trying to make anyone mad,just stateing the truth.
Posted by treepatrol (Member # 4117) on :
You Can Join Petition Now New co-petitioners can join Natural Health Solutions Citizen's Petition at any time by clicking here.ADD NAME TO PETION
More than 1200 Americans have joined in the Citizen's Petition. Please join in, too, and let the U.S. Codex Office know that you oppose losing your health and health freedoms. This is a simple, practical, and effective step you can take to do something about the Codex Alimentarius problem. ADD NAME TO PETION
I am very thankful for the leaders planning and organizing for the future. We don't have to be just victims of an epidemic, together we can change things.
I have personally been feeling stuck, but also have a feeling that things will turn around. With all the turmoil related to the new IDSA guidelines, some of us are probably bonding together in a healthy way. The associated feelings include being scared and mad.
These feelings can energize our passion. We have to focus our passion to a higher intensity than the other side. A person does not have to become loud or obnoxious to communicate passion. It involves intensity that can even be expressed in a soft voice.
We are going to win. Losing is not an option. Losing could be a death sentence for our children and grandchildren not yet born. Our passion can energize us to stay with the effort until appropriate disgnosis and treatment is easily obtained.
What no single one of us can do, we can do together. I want to be a part of that.
Pigwit
P.S. Tincup, you can call me anything you want.
Posted by trails (Member # 1620) on :
yes, I am with betty--what do you want us to send to our reps?
Posted by bettyg (Member # 6147) on :
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.[/B
3. now do your FEDERAL SENATORS AND REPS together for those with DIRECT email shown. [B]SEND IT TO YOURSELF. SAVE IT IN DRAFT FORM.
4. 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, 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 .
Hoping this will help you all! Bettyg
[ 27. October 2006, 01:18 AM: Message edited by: bettyg ]
Posted by Mo (Member # 2863) on :
....it is time.
Posted by Larkspur (Member # 5131) on :
Yes.. I am VERY exhausted still after the long conference and the multiple projects.. so please excuse me. Brain is not with me today either.
You said..."I agree it has to be a large action & not fragmented."
100 percent true! Thanks for pointing that out.
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8man...
You said.. "I'm begining to think all these emails we been sending out for the last ten years is what is getting us in so much trouble.IT CERTAINLY,hasn't done no good.Has it."
That is an interesting thought. It actually MAY seem true on the surface... but when I thought about it.. I realized just how far we have come over the years. For example...
Years ago I didn't have a list of doctors who I could send folks to that would help. All that I had was a "List of the Least Evil Idiots". Today we have hundreds of doctors we KNOW about.. and thousands more also trying to help in the background. And these guys/gals are risking everything to help all of us.
Ten years ago.. I had never ever ever met anyone else who had chronic Lyme. And I was out there in the spotlight doing programs in various states to help educate. I still remember the very first "other" chronically ill person I ever met. I was no longer the "freak" who was alone out there and thinking everyone else got better but me. Today, through emails and efforts of joining together.. we are a force to be reckoned with.. and we WILL be heard.
Years ago NO one.. especially the legislators and officials cared a dippity stick about Lyme disease ... and many had never heard of it. Today.. we are getting bills passed in states, getting research funds.. and most of all... finding out there IS a corrupt bunch of garbage going on.. and we are able to bring it to light.
Years ago I was told 7 days of tetracycline was all that was needed to "cure" Lyme disease. Today EVERYONE knows that just ain't so. Even the worst of the worst.. the Bumsteer gang... knows at least 2-4 weeks are needed.. and retreatment is often necessary.. even by THEIR pukey theories.
There are MANY more things that have changed through our efforts.. but to be kind... I'll spare you the rest of the lecture. (Yes.. it's your lucky day. ~smile~)
So don't be a sour puss (it doesn't look pretty on you)... and do know that even though it doesn't seem like it sometimes.. we ARE making progress.
Otay?
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Posted by Tincup (Member # 5829) on :
Please send the web site and wording (below) to your legislators... with a breif note about you and your problems with Lyme. Ask them to sign the petition and help folks in YOUR state.
I already heard back from a few of my legislative contacts.. and they signed on our petition.. and are now MORE aware of our problems.
PO Box 1438, Jackson, New Jersey 08527 888-366-6611 [email protected] 732-938-7215 (Fax) LymeDiseaseAssociation.org Petition
We, the undersigned, are gravely concerned by the new Infectious Disease Society's (IDSA) guidelines on Lyme disease. These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present.
They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease. We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy.
Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.
These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated.
Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure.
Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral. There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society.
Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process.
No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine-to improve the quality of life of the patient.
Posted by Tincup (Member # 5829) on :
Tree...
Good info! Thanks for putting it so neatly on the board for all of us... especially me!!!
We DO need to protect our rights. Good for you!
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Oh dear pitwit.... said Winnie the Poo...
I just don't know what to call you.. pig.. or wit.. or pigwit. It is such a question that begs an answer.
Perhaps I will consult with my good friend Christopher Robbins. I am quite sure HE will know what to do.
~smile~
You said.. along with many other important things.. "What no single one of us can do, we can do together. I want to be a part of that.
Well, shoe fly pie!
We'd be proud as a pickle to have a pigwit aboard!
Glad you are helping. Thank you! `````````````````````````````````````````````````
Trails...
You doing better these days? I do hope so.
You can send the stuff in the post above if you would care to. A brief note of introduction would be appropriate too. A NICE one.
Thanks for joining in to help.
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Ho Ho Mo Jo...
No longer will our gator pit contain those fisty gators.. nor will they lay around waiting for us to serve them a meal anymore.
ATTENTION ALL DUCKS!
BOLO.. BOLO.. (Be on the look out)...
Our gators have left the pond. They are now in search of some ducks to chomp on. YOU may be next!
Good to see you! Good to hear you are ready to roll! Thanks!!!
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Posted by Tincup (Member # 5829) on :
BettyG..
No.. I didn't forget you. My brain is in super low gear right now.. so I must think to respond to longer posts.. sorry.
Oh.. ok..
Now that I've read all you wrote.. I find I do not need to respond specifically to you.. as you are helping all of us with good information.
BUT..
I must take a least one minute to say...
THANK YOU!!!
Posted by bettyg (Member # 6147) on :
Hi there Tincup; Big favor to ask of you, would you copy mine or your version of Pat Smith's letter to the TOP of your post so ALL lymenet members have it right on top to copy from to start EMAILING LEGISLATORS promptly.
I broke up Pat's long paragraphs into shorter ones for easier reading, and highlighted the most important points in her letter.
It's buried here, and will take folks a long time to try to see what you are asking them to SEND to congress/state legislators! Thanks my dear friend! Bettyg ************************
I got this on part of my group list I was block copying to Yahoo for PAT SMITH'S SENATOR/STATE mailing .
Please reply PROMPTLY so I can get these emails sent to ALL Tincup wants sent to. HEARTFELT THANK YOU TO YOU WHIZES OUT THERE! Bettyg *****************************
LYMENET MEMBERS, THIS IS WHAT YOU ARE TO SEND TO YOUR LEGISLATORS PLEASE ....
with a breif note about you and your problems with Lyme. Ask them to sign the petition and help folks in YOUR state .
Lyme Disease Association, Inc. PO Box 1438, Jackson, New Jersey 08527 888-366-6611 [email protected] 732-938-7215 (Fax) LymeDiseaseAssociation.org
PETITION
We, the undersigned, are gravely concerned by the new Infectious Disease Society's (IDSA) guidelines on Lyme disease.
These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present.
They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease.
We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy.
Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.
These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated.
Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure.
Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral.
There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society .
Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process .
No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine-to improve the quality of life of the patient. *********************************
Posted by Tincup (Member # 5829) on :
Betty G.
It is on top already.
???
Posted by trueblue (Member # 7348) on :
Ok... granted... I'm feeling a little dense but... I've read this 3 times and still don't understand the directions.
Is it completely clear and I'm not getting it? I suspect that's the case. Anyone want to help me figure out what I actually need to do?
I don't think I can write a paragraph (or anything comprehensible) about myself right now, may have one from a past mailing but doubt it (kind of think my sent box has long been emptied since then).
I'm sorry Posted by sometimesdilly (Member # 9982) on :
Hi Betty-
well, i'm not even a third-rate computer whiz, but i googled the errort message you're getting, and it seems there are 2 things to look into.
one is really simple to check. make sure all the names on the list are separated by COMMAS. Semi-colons sometimes don't work.
the reasoning for the other thing is way above my paygrade, but it is also easy to check. Are you sure the messages are NOT being sent?
The advice is, check your "sent" folder to see if the msgs have been sent, even if it doesn't seem that way to you.
I'll cut and paste the logic of THAT from the computer forum I found. If you understand it, good for you! My head still hurts from trying to read that gibberish.
WARNING- gibberish below!!!
May 8, 2002 12:10 PM Error message [email protected]>: bad host/domain syntax Larry,
I sent a message to a number of addresses and received this message informing me that one or several of them could not be delivered. How do I know which one(s) could not be delivered so that I can try again?
> This is the Postfix program at host larry.unet.brandeis.edu. > > I'm sorry to have to inform you that the message returned > below could not be delivered to one or more destinations. > > For further assistance, please send mail to > > If you do so, please include this problem report. You can > delete your own text from the message returned below. > > The Postfix program > > : bad host/domain syntax: > ".SYNTAX-ERROR"
Rich Graves
May 8, 2002 12:15:33 PM Your message was delivered to everyone as intended.
The To: or Cc: line of your message *also* included [email protected].
Really. It did. You just didn't notice.
Most of the time, this is caused by using IMP Webmail to "Reply All" to a message with invalid headers sent by a Microsoft mail program. The message to which you were replying was sent to a blind-carbon-copy list with something like "Distribution-List;" in the To: header. IMP has no way of knowing who is on your correspondent's local distribution lists, so it replaces them with INVALID_ADDRESS and expects you to fix or remove them. Rich Graves
May 8, 2002 12:17:49 PM Look in your sent-mail folder for the actual recipients.
LEAVING GIBBERISH ZONE ---------------------
Ufta, eh?
The last possibiity seems to be that maybe a mail server along the way thinks you are spamming, because there are so many names on one message.
I have no idea how to solve that except maybe to send in smaller groups if no other solution works for you.
Good luck!
Dilly
Posted by Tincup (Member # 5829) on :
Thanks Dilly for helping BettyG. Her questions are not what I can answer.
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True.. silly YOU!
It is as simple as mud!
But.. I'll try again.. just for you. OK?
Now...
I will assume you can figure out how to click on the link below fro the petition... and fill out the box with your information?
If not.. wait till you feel better and try again... goof ball.
If you want to notify your state's representatives...
1. Look for their contact information at this site below. Then copy their email addresses on one of YOUR emails... in the BCC (Blind carbon copy) section.
2. Now copy this letter in the face of that email.
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Dear Legislator,
I am a chronically ill Lyme disease patient and I am having problems getting medically necessary treatment. I would appreciate it if you could help me and others who are sick.
Please go to this site posted below and read a short description about the problems we are having. I would respectfully request you also sign in to support me and others in our state who need your help.
3. Next... fill in your name, address and phone number under the word "Sincerely" in that letter.
4. And the last step... smile big... and then push the "Send" button to mail it to them.
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When you are done.. come back here and tell me how you did!
Posted by Tincup (Member # 5829) on :
We just hit 5,000 signatures!!!!
Good for you!
Posted by Tincup (Member # 5829) on :
If there is more than one person in your household over 18 years old.. you can sign them all up individually using one email address.
Posted by bettyg (Member # 6147) on :
Tincup, so the below HERE is what we are to send to STATE and FEDERAL SENATORS/HOUSE OF REP MEMBERS, RIGHT??
You had another letter just a few posts up from the below one, and that made it confusing WHICH of THESE was to be sent. Now I'm just confirming what I think you said to do.
If you want to notify your state's representatives...
1. Look for their contact information at this site below. Then copy their email addresses on one of YOUR emails... in the BCC (Blind carbon copy) section.
2. Now copy this letter in the face of that email.
Dear Legislator,
I am a chronically ill Lyme disease patient and I am having problems getting medically necessary treatment. I would appreciate it if you could help me and others who are sick.
Please go to this site posted below and read a short description about the problems we are having.
I would respectfully request you also sign in to support me and others in our state who need your help .
4. And the last step... smile big... and then push the "Send" button to mail it to them .
When you are done.. come back here and tell me how you did. Tincup
Dilly, thanks for your help. NO PROBLEM on commas; I checked 1st, another person proofread with no problem, and when I got this error; I rechecked for a 3rd time. NOPE not that.
FYI, they have NOT been sent. They have been copied to a BLANK email to be sent when I got Tincup's LETTER CONTENTS.
I copied a smaller group of them and reduced the amount due to this SYNTAX error appearing.
When you SAVE AS DRAFT, click on that link after it goes into the DRAFT file folder. Now look at the BCC area for the GROUP LIST of the legislators you block copied there.
Do ALL their names show up? HOPEFULLY YES!
In my case, PART of them did on one; only 2 on another both showing that SYNTAX error code!
they have NOT been sent. They have been copied to a BLANK email to be sent when I got Tincup's LETTER CONTENTS
Dilly, I'll go back now and limit the email group list to 25 each vs. 30+ I had and see if this is STILL happening.
IOWANS....you may have problems too IF you USE YAHOO! Let me know if you do and KNOW HOW TO SOLVE THE ERRORS! I'll be happy to change IOWA'S MASTER LIST IN ACTIVISM shown above by TC ! Bettyg Posted by Tincup (Member # 5829) on :
My fault.. I am soooo tired I can't think.
I just wrote the sample thing for dip stick (True) so she would know. But looking at it.. anyone can use it or something like it. Hope that helps!
Posted by sometimesdilly (Member # 9982) on :
Hi Betty and TinCup-
I know I'm in major brain-meltdown mode here- no meds in over a week- ouch!! Maybe that's why I'm kinda with True on the confusion thing.
Part of the problem for me anyway is seeing a ton of info in a small space all tightly packed- my mind goes blank.
I'm also not getting whether emails/faxes are requested to go to just STATE legislatures right now, or FEDERAL too, both SENATE and HOUSE?
(and- would it make some sense to wait on the HOUSE side until after the elections?? Lots of seats might change there, far fewer in the Senate...)
And the other thing I'm not getting is what if anything is being waited for before the emails/faxes should be sent? Didn't Pat Smith (LDA) letter say send now?
Last, kinda related. I've signed myself up to create a webpage specifically oriented to the anti-guidelines campaign. Supposedly the site can be built in a day.
My original thought was to have the site oriented towards building bridges and links to advocacy groups and individuals OUTSIDE the lyme community. (to use as a megaphone for LDA's national campaign). And I'm going to do that.
The message is clear, really. Allow a group like the ISDA to write biased un-objective, non-scientifically based, etc. guidelines that effectively cut off treatment for one group of folks with a serious disease, and it WILL NOT END THERE.
WHAT TOO EXPENSIVE DISEASE WILL BE TARGETED NEXT? Etc.
I think lots of seasoned folks can be drawn into this battle--the more the better. Alliances sure can be powerful.
Anyway- I'm going to have state/federal legislators' contact info on that site.
I don't want to muddy the waters of the project you guys have been working on, but maybe having info in that format (should be able to send individual emails by clicking on each email address) might help some who are intimidated by doing a huge list?
Let me know what you think. I can orient one or two pages just for lyme-netters to use if so.
Dilly
Posted by bettyg (Member # 6147) on :
Dilly and Tincup,
Here is something NEW I just received a couple of days ago but hadn't posted about but that fits this project and OTHER MASS MAILINGS!
Tincup, earlier this year when you started the 50 state project collecting all this stuff, I commented I'd contact Alzheimer's disease HQ and AARP since I'm politically active with them also. Finally got 1 feedback below.
This is from the ALZHEIMER'S HQ where I inquired how their mailings are set up going to each state showing THEIR senators/reps in DC....HER RESPONSE IS FIRST; my original request is under hers! *********************************************
Betty - Apparently I misread your previous email. I had planned to get back in touch with you about your request after the Election.
Just to clarify, are you looking for the this information from us on all Members of Congress? If yes, we cannot provide this information to you .
We currently use a proprietary system for the information that you are collecting. It is NOT a traditional database that can be shared .
We use a system that is internet-based (called Kintera) to call up the information when needed for emails and letters we send out to advocates.
These days, most Members of Congress do NOT accept emails via their .gov email address. They use webforms on their websites.
NOTE: The system we use allows advocates to bipass Congressional webforms when "emailing" Member of Congress .
You can also purchase the information from online services such as Leadership Directories Inc. (http://www.leadershipdirectories.com/products/cldo.htm).
-Kate Gordon Associate Director, Campaigns and Grassroots Advocacy Alzheimer's Association Advocacy and Public Policy Division [email protected] *********
From: Betty Gordon Sent: Wednesday, October 18, 2006 1:14 AM
To date, I have NOT received a REPLY back on my request. Please give me the courtesy of a response since I've been an ACTIVE alzheimer's advocate since 93. Betty
Jennifer or whoever sent this, I have CHRONIC LYME/tick disease. We have begun collecting from all 50 states the following:
FEDERAL ...senators & reps their emails, complete mailing addresses; their phone nos. and/or fax nos. STATE ... senators & reps their emails.
How is your org set up for the above? In the past you've sent me info to contact my state reps in DC.
Wandered if you would be willing to share this info with me after NOV. 06 elections when new folks are voted in? Thank you for your response in the future. ******************
Dilly, I like your idea about your NEW SITE TO BE DEVELOPED by you.
Have 2 pages for lymenetters to use for this type of thing for INDIVIDUAL EMAILS for less experienced, and an option for more advanced doing MASS MAILINGS like Tincup's project is right here.
Dilly, I know with ALL Iowa's names would be antire page so with 50 states I don't know how that would work, but PM me OFF the board so we don't take space up for TC;s CURRENT project ok!
I have spent the last 60 minutes working on my DRAFTS with the state senators names on and reduced my BCC LIST TO 20 NAMES ONLY, and still get that darn SYNTEX error! I'm about to pull out my remaining hair. I've edited the list several times now.
I's use Dilly's suggestions from the google she posted here. I'm trying to work out ALL PROBLEMS NOW WITH IOWA for my yahoo mail account with NO success!
I posted my computer problem in computer section, but it came back to me....too long a title with 30 characters. I'll try again. Hate it when the pcs are smarter than we are! Posted by Mo (Member # 2863) on :
.... Posted by trueblue (Member # 7348) on :
Tincup, Ok, the petition... I signed early on, before you posted this so I'm maybe not as big a dipstick as I appear.
The second part I will have to read over again and again and see if i can make sense of it. It's sending me into major overwhelm.
Maybe tomorrow will be the day it makes sense.
I'll report back when I get it together. Posted by trueblue (Member # 7348) on :
ok, I tried to send it to the first group of state senators and the email addys don't work, there's something wrong that hotmail won't accept.
I'll try again tomorrow ot find the fix.
dipstick, pathetic but trying. Posted by bettyg (Member # 6147) on :
Blue, work on finding the ERROR in your list.
Are you the creator of YOUR STATE'S EMAIL LIST?
Let whoever know of ALL ERRORS encountered so the originator of your state's records can be CHANGED TO CORRECT FUTURE MAILINGS....ok. Bettyg Posted by sometimesdilly (Member # 9982) on :
Mo:
Betty-
here's a link to ask your mail question/check archives to see if the answer is already there:
If that doesn't have the answer, how about googling: "forum email large mailing question".... or something similiar.
Someone else has had that problem and asked- the answer must be out there. ---- Also Betty ( et al )
The questions I'm asking are directly related to the LDA's campaign- Pat Smith's call to action.
Forgetting the webpage for a minute, most of my questions are about the confusion I'm feeling about who we are being asked to contact right now, etc.
My webpage-to-be isn't something separate from that; it is a way of greatly expanding my "contacts list." I was offering to include a space for lymenetters (and whoever else) to use for greater ease in contacting legislators if that helped.
Dilly
Posted by Tincup (Member # 5829) on :
I'm lost.. too much stuff for MY brain going on here.. and others who have written to me asking for help.
Soooooooooooo..
If you want to know what YOU can do to help yourself... and all of us ...
quote:Originally posted by bettyg: Blue, work on finding the ERROR in your list.
Are you the creator of YOUR STATE'S EMAIL LIST?
This first part, yes, I was. It was checked by you and me when I orignally posted it.
There shouldn't be any mistakes and Hotmail doesn't tell me what it doesn't like about it.
I cannot do this now. I need to go back to bed. maybe later. sorry
Posted by bettyg (Member # 6147) on :
Dilly & others, here's what I found using Dilly's link above...good link by the way!
Do you know how I can switch to BETA? I just spent the last 45 minutes going to the site on SYNTAX error trying to find the answers, and came across really technical stuff.
2 things they mentioned were: change to BETA text.
check the main page of your server for the limits, size of mail, and about spam filters...
getting off for now, back tonight around 10 pm...Bettyg
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