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» LymeNet Flash » Questions and Discussion » Activism » Action Alert- The fat lady isn't singing yet!

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Author Topic: Action Alert- The fat lady isn't singing yet!
Tincup
Honored Contributor (10K+ posts)
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When this action alert came in tonight and I saw what we needed to do, I thought to myself...

"I am just too tired and too busy to get this note out to others right now."

Then while researching, I stumbled across this site. Please take a look. A close look.

http://www.rally11-30-06.lymerights.org/html/lynn_mccabe_11-30-06_protest_21.html

Needless to say, I stopped what I was doing... and here is the new alert. Please pass it to everyone you know and please do what is being asked. We just can't quit now.

````````````````````````````````````````````



CALL TO ACTION 2008 #4 (June 13, 2008)

Pat Smith, President, Lyme Disease Association, Inc. (LDA) www.LymeDiseaseAssociation.org

Lyme & Tick-Borne Disease Prevention Education & Research Act of 2007 S-1708 / HR-741



History: As you know, the Lyme bills are being held hostage by IDSA & congress. The IDSA (Infectious Diseases Society of America) does not want your voice heard and has made that clear to Congress.

We must make patient voices heard. You need to be counted. We are hearing that many congressmen and senators have heard about this Lyme/IDSA issue but they have still not acted.

Only you can reverse that situation. There may still be a chance for the July agenda.

Don't let IDSA control your health!

IMMEDIATE ACTION REQUIRED:

Who: All Individuals, organizations, doctors

When: June 13-27

What: Contact the following Congressmen and Senators (6 total)

How: Please call them. Second choice fax if there is a listed fax number

Why: The House Health Subcommittee (part of Energy & Commerce Committee) and Senate HELP Committee are where the Lyme disease bills are, and if the Committee chairs do not release the bills for a vote, the bills will die.

1. Call Your Personal Congressman Find your own US Representative here: http://www.visi.com/juan/congress/

Sample Phone Blurb

I'm calling to ask Congressman (NAME) to contact Frank Pallone, House Health Subcommittee Chair. Tell him to schedule a hearing on HR 741, the Lyme bill.

Currently, the Committee is not scheduling the bill but is bowing to a powerful medical society (IDSA) that has been investigated by the Attorney General of Connecticut and found to have substantial conflicts of interest regarding Lyme disease treatment guidelines.

The Lyme bill does not focus on treatment, but research monies to find a gold standard test for Lyme, and it establishes a federal advisory committee based on a common model for federal committees, which includes patient representation.

IDSA does not want patients to have a voice in their own disease. I need your help today.

Call Mr. Pallone and tell him you represent me and expect me to have a voice in Lyme disease issues and to post the bill. (leave your name, address, contact)



2. Call Congressman Dingell (MI), Chair of Energy & Commerce (P) 202-225-4071 / (F) 202-226-0371
Sample Phone Blurb

I'm calling to ask Congressman Dingell to contact Frank Pallone, House Health Subcommittee Chair. Tell him to schedule a hearing on HR 741, the Lyme bill.

Currently, the Committee is not scheduling the bill but is bowing to a powerful medical society (IDSA) that has been investigated by the Attorney General of Connecticut and found to have substantial conflicts of interest regarding Lyme disease treatment guidelines.

The Lyme bill does not focus on treatment, but research monies to find a gold standard test for Lyme, and it establishes a federal advisory committee based on a common model for federal committees, which includes patient representation.

IDSA does not want patients to have a voice in their own disease. I need your help today. Call Mr. Pallone and tell him to post the bill and give patients the voice they deserve to have. (leave your name, address, contact info)



3. Call Congressman Frank Pallone (NJ) Health Subcommittee Chair (P) 202-225-4671 (F) 202-225-9665

Sample Phone Blurb

I'm calling to ask Congressman Pallone to schedule the Lyme bill for a hearing today! He has made a grave mistake in siding with the IDSA which has been investigated and discredited.

The IDSA Guidelines' settlement is a treatment issue unrelated to the bill which asks for research money to find a gold standard test and for a patient voice on a federal advisory committee which is a common model for federal advisory committees.

Mr. Pallone's job is to help patients not support an investigated, discredited medical society. (leave your name, address, contact info)



4. Call Your Personal US Senators (2) today Find your own 2 senators: http://www.visi.com/juan/congress/

Sample Phone Blurb

I'm calling to ask Senator (NAME) to contact US Senator Edward Kennedy, Senate HELP Committee Chair. Tell him to schedule a hearing on S-1708, the Lyme bill.

Currently, the Committee is not scheduling the bill but is bowing to a powerful medical society (IDSA) that has been investigated by the Attorney General of Connecticut and found to have substantial conflicts of interest regarding Lyme disease treatment guidelines.

The Lyme bill does not focus on treatment, but research monies to find a gold standard test for Lyme, and it establishes a federal advisory committee based on a common model for federal committees, which includes patient representation.

IDSA does not want patients to have a voice in their own disease. I need your help today. Call Senator Kennedy and tell him you represent me and expect me to have a voice in Lyme disease issues. (leave your name, address, contact)


5. Call US Senator Edward Kennedy (MA) Senate HELP Committee Chair (202) 224 4543 (P) (202) 224-2417 (F)
Sample Phone Blurb

I'm calling to ask Senator Kennedy to schedule the Lyme bill for a hearing today! By not holding a hearing, he is ignoring the plight of patients and listening to the IDSA, which has been investigated and discredited.

The IDSA Guidelines' settlement is a treatment issue unrelated to the bill which asks for research money to find a gold standard test and for a patient voice on a federal advisory committee which is a common model for federal advisory committees.

Senator Kennedy's job is to help patients not support an investigated, discredited medical society. (leave your name, address, contact info)

``````````````````````````````````````````````


Thank you for taking time to make OUR voices heard!

Thank you for helping the little ones who can't help themselves!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20325 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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I just made my calls. Kennedy's office has there phone off the hook... but all others had message machines. I wished them all a Happy Friday the 13th too.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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kam
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Member # 3410

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Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
bettyg
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hi tinny,

please add JUNE 13 before your action alert ok! we've got MANY ACTION ALERTS; we just need to keep them SEPARATE to know which is the MOST CURRENT.
*****************


cause you know i'm going to do my duty especially now that ALL MY LONG DISTANCE PHONE CALLS ARE FREE!!!!
****************

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bettyg
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...
PLEASE PRAY FOR IOWA FOR ALL FLOOD VICTIMS AND I ASKED THIS OF ALL DC PEOPLE I TALKED TO EXCEPT LAST ONE WHERE I WAS BEING CUT OFF...

made my calls to


pallone .. 202 225 4671
he'd pass along my words to pallone...


dingle .. 202 225 4071
didn't mention about logging me,
"CALL YOUR CONGRESSMAN ABOUT THIS"
----------------------------------
I HAVE; TOM LATHAM WROTE PALLONE & DEAL! ok!
********************************************


202.225.2927...dingle's ENERGY/COMMERCE COMMITTEE
he took my my name/no.


kennedy's HELP no. 202. 224 .5375
megan transferred me ...

SARAH took my info.
she remembered talking to me before, and said she talked to STAFF PERSON "LAURA" unknown of spelling, and if i wanted to fax her a testimony to do so.

TOLD HER I HAVE NO FAX! sarah said she/laura would be happy to let me KNOW WHEN THIS BILL IS PUT ON THE AGENDA!! ************************
*****************

this time she was in a hurry... Betty

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bettyg
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received this EMAIL from another of IOWA'S HOUSE REPS YESTERDAY...


Thank you for taking the time to share with me your views on H.R. 741, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act.


The views of my fellow Iowans are an essential component of my decision making process as a member of Congress.



I understand and share your support for protecting the public's health.


I agree that people living with tick-borne disease should be able to access the treatments they need.


As you know, H.R. 741 would provide for the expansion of federal efforts concerning prevention, education, treatment and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.


As you know H.R. 741 was introduced by Congressman Christopher Smith on January 31, 2007, and has been referred to the House Committee Energy and Commerce.


Please be assured that I will keep your views in mind should the full House address this issue during the 110th Congress.

LEONARD BOSWELL,

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bettyg
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received this email from IOWA'S SENATOR TOM HARKIN:

6-17-08

Dear Betty,


I appreciate having the benefit of your views and concerns regarding S. 1708, the Lyme and Tick-borne Disease Prevention, Education, and Research Act.


Your input on this matter is helpful to me. As I
examine this issue, I will certainly give your views every consideration.


Again, thanks for sharing your views with me. Please don't hesitate to let me know how you feel on any issue that concerns you.

TOM HARKIN
****************

made my 4 calls today; last no. recogized my name and super friendly.

3rd no/guy couldn't wait to hang up on me!

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bettyg
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made my 4 calls today.. they are still logging all calls.


kennedy's health dept. stated "there is very stiff competition" and i said yes, the infectious disease drs. are bought off.


all we want is to be treated EQUALLY like all other diseases; lyme patients pay out of pocket for all or majority of all costs.


some are paying $5-$10,000 a month out of pocket and are now HOMELESS.


I'M CALLING FOR ALL THE HOMELESS, THOSE WITHOUT PHONE SERVICE, AND THOSE WHO CAN NOT AFFORD LONG DISTANCE PHONE CALLS! he understood, and was very compassionate! [Wink]

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bettyg
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hi,

i made my daily 4 calls and was interesting!

PALLONE'S office i got a new guy today! very friendly and didn't cut me off.

requested my full mailing address so afterwards went into my speil of having C.LYME 38.5 yrs; 34 yrs. misdiagnosed by 40-50 drs. ... i'm so sorry he said.


i'm calling on behalf of the thousands who are homeless, don't have phone service, and those with phones but who can NOT afford to call long distance, that are voices are heard to BE IN FAVOR OF PUTTING ON AGENDA ... LYME BILL.


"they would see what they can do about this"! new term used today on me.


2nd/3rd calls; noted it; rushed me off.

4th call; kennedy's HEALTH office; nice young man so i added my speil i typed above there too.

he'd give this info to the appropriate person handling lyme and confirmed it was YES FOR LYME BILL ON AGENDA.
*********************

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ellenluba
LymeNet Contributor
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Betty G,
You are a one woman army. Thanks so much for your calls. I hope everyone else is doing following the action alert.

All our thoughts are with you folks in Iowa, What a nightmare.
Ellen

--------------------


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bettyg
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ellen,


thanks for all your thoughts of ALL IOWANS HIT BY FLOODS!! it's the most devastating thing i've ever witnessed in my lifetime....


talked to my cedar rapids niece last night at family gathering. her condo is on high ground; she is a HS teacher.


2 elementary schools near her were COMPLETELY UNDER WATER; RUINED!


a friend of hers has a business downtown cedar rapids; completely ruined.


thank you for the compliments.

when i call monday, i'm going to ask them when i call if i can give them:


... names/addresses of those homeless;

... those who can't afford to call as i am since i NOW HAVE FREE LONG DISTANCE!!!


... those who do NOT have phone service any more


won't hurt to ask!!! i don't have a fax where if i had FOLK'S ACTUAL WRITTEN APPROVALS TO USE THEIR NAMES/ADDRESSES would make this on the up and up!! ***************************************

[Wink]

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bettyg
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PAY DIRT AGAIN; can't believe how lucky i have been lately!!!!


made my 4 calls today.


i asked PALLONE's office how i could get them info on COUNTING ALL THE BELOW:


... the HOMELESS LYMIES;

... those without phones;

... those w/phone but NO MONEY TO CALL LONG DISTANCE as i've been doing


how could THEY ALL be represented???


Nicholas at PALLONE'S OFFICE STATED:

... prepare a petition for ALL those this would apply too;

... on petition, all those should show the following info:

COMPLETE NAME

COMPLETE MAILING ADDRESS WITH ZIP CODE
*******************************************


and then MAIL to:
*****************


Rep Frank Pallone
237 Cannon Ave.
HOUSE OFFICE BUILDING
WASHINGTON, DC 20515.3006


they would THEN count all those persons shown on the petition!!!
******************************


4th call... KENNEDY'S HEALTH OFFICE


I talked to MEGAN; told her what i wanted to do on getting more folks' voices to count on our lyme disease petition.


SIMPLE SOLUTION:

get same info as above:

full name and COMPLETE mailing address with zip!

***********************************************

then you can email a whole GROUP OF THEM TO them there so THEY ARE COUNTED!!


kndyintern10_help[email protected]
*******************************************

whoopie!! how about that progress today? [bonk] [Wink]

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bettyg
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made my 4 daily calls.


please every time you call this no. 202.225.2927
**************


ask to leave a message also on OPINION LINE giving your full name/address,


and why you want the lyme disease bills on the AGENDA.


we get 2 MINUTES MAXIMUM; so put all your convincing things on the beginning of your phone call! today i used up the full time! yesterday, i did NOT!


keep talking until you have 2 minutes used up; they give you 15 SECONDS about time being up!
**********************************************

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bettyg
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made my 4 calls today; did you? [Wink] [group hug]
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bettyg
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made my 4 calls today! have you?


i love calling this no. 1.202.225.2927 ENERGY AND COMMERCE for S 1708 bill


when you are done, ask for the OPINION LINE and they will transfer you to it where you have 2 minutes to give them you name/address and WHY you are calling!!!


you can give them different INFO DAILY!!
OPPORTUNITY DAILY!! please call them.....


this is KENNEDY'S OFFICE...ENERGY/COMMERCE! thx [Smile]

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bettyg
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it's so funny now; when i call the 3rd phone no....health and COMMERCE i believe; they hear me say my name/address and i'm callign on lyme bill, and then put me on hold transferring me to DAILY OPINION LINE where i leave my 2 minute speel EACH DAY.

today i suggested they buy a copy of UNDER OUR SKIN documentary and left web site info to get there! betty [Smile]

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bettyg
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..........

i received a voting record email on my iowa congressman how they voted.


at bottom, it stated they are now OFF UNTIL JULY 7TH; so 7 days of NO CALLS TO THEM!
**************************************


anyone know if their staff all gets vacation time OR are they manning the phones???
**************************************

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minoucat
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I've been offline for 10 days -- where are we on this? Do we keep calling?

--------------------
*********************

RECIDITE, PLEBES! Gero rem imperialem!
(Stand aside plebians! I am on imperial business.)



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bettyg
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yes, PLEASANT NEWS BELOW!!
****************************


we are still calling; i have been since end of MAY!! they know my voice by heart now!!!

UPDATE 7-18-08
***************

when i made my calls today, i asked at ENERGY AND COMMERCO NO., 202 225 2927 ,


WHO listens to our opinions on opinion line??
**********************************************


Tommy told me HE DOES, or CHIEF CLERK, or 1 other individual...


they route these comments to appropriacte people or TRANSCRIBE THEM getting them to where they need to be.



tommy knows my voice by heart! i told him mine weren't written down; it's all off the top of my head, and i have problems at times thinking of words to use, etc.


today, i don't know what i'm going to talk about, but i'll just start with something and go from there!

he was very pleasant to talk to; hot/humid there!

at my home yesterday/last night, we got between 4" - 5" RAIN AGAIN!! man, it came down hard!

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bettyg
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i've recruited several more mothers on calling congress on our lyme bills!! yippee! especially to call daily the OPINION LINE! [Wink]
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bettyg
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up,

i needed kennedy's OPEN LINE to give to someone now, and decided to bring it up vs. looking so long for it !!!


time is getting SHORT ON GETTING OUR LYME BILLS ON THEIR AGENDAS .... BY SEPT. 26 !!'
************************************

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