Urgent Action Needed To Stop IDSA Corruption

[carla]

Originally Posted by Milly

Does NOONE care about this ?? I'm amazed at the lack of interest.. if all the caring doctors in Lyme and Morg have to give up, we will all be a great deal worse off... and interest in our problems will be even less. I'ts hard for me to write as I don't have a US senator...

Milly :<(((

Your right Milly.Everyone should send an e-mail to their Senator immediately. They cannot be allowed to get away with this.This is something that will effect everyone of us at some point.
carla xxx

[hilly]

It's not difficult.... they give you sample letters, addresses, tel. nos etc.... Thanks Carla xx

[niecy]

I got this from a friend today and was asked to pass it on.

Niecy

Today was Lisa Marie's birthday. It was hard. If you have any time at all, please do this. It won't take long and that is really and truly the truth. You can call tonight or in the morning and leave a message. I have attached my birthday letter to my sweet daughter. We could use your help. Karen

------------------------------
April 17, 2008
My Dearest Lisa Marie,
Happy Birthday, Sweet Angel Girl!!! Thirty years ago you made me a mother and I have so loved being your mother. You have given me joy that cannot be measured and taught me more than any other human being. I admire your strength and courage and through your continued perseverance, I have found strength and courage, also.
This life will be over in a moment. We are here for a purpose and I believe that ever more strongly after the past seventeen years. The pain of watching you suffer has been incredibly difficult but I know that it has been so much more difficult to bear the pain and suffering. You have been so brave and God has brought you through so much. Watching you grow has been a privilege; being here with you has been a privilege; knowing you has been a privilege.

I love you.
i carry your heart with me
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate, my sweet)i want
no world(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
~ee cummings
From my Heart to Yours, with All my Love,
-----------------------------------------------------

Hello everyone,
I just received this from my friend, Karen. She lives near me in the Memphis area. Lisa Marie, her daughter, was a normal healthy child until about 12 yrs old. She contracted Lyme disease. Since that time, Lisa Marie has become totally bedfast, requires a trach and feeding tube and IVs. She is blind and has severe hearing sensitivies. Her partents totally care for her. She celebrated her 30th birthday, today.

Karen is very active in Lyme Support Groups, which is how we met. This legistation on Lyme seems critical and will impact Morgellons, too. I wanted to pass this on to spread the information.


URGENT! IMMEDIATE PRIORITY!
April 17, 2008

Make Congress Count You, Not Just IDSA!

WHO
Everyone, everywhere concerned about Lyme disease and the cover-up of its seriousness.

WHAT
IDSA is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.
We have just heard that Energy & Commerce is making up a list of the only health bills to be heard NOW. If the Lyme bill does not make the list, it could be the end for this bill.
Don’t let this happen! Take control of Lyme disease out of the hands of IDSA and put it where it belongs, in your hands.

WHEN
Take action TODAY April 17 & TOMORROW. (if you don't receive this in time, call anyway)

WHERE
The US House Energy and Commerce Committee & the Chair; House Health Subcommittee Chair

HOW
Call or fax ALL of these DC offices below
Congressman Dingell (MI) Chair Energy & Commerce (P) 202-225-4071/ (F) 202-226-0371
Congressman Pallone (NJ) Chair House Health Subcommittee (P) 202-225-4671 /(F) 202-225-9665
Energy & Commerce Committee Phone 202-225-2927 Committee Does not have a public fax email http://energycommerce.house.gov/memb...act_form.shtml (will accept all zip codes)

Clear phone or fax message example below (Simple is better)
(Polite but firm please) We want HR 741 on the House Health Subcommittee agenda today! We are sick (or friends, family) and Lyme is spreading. We need help from you, now. We are not going to sit by and wait until our families and friends are all sick and dying from this devastating disease. (name, address, contact)

WHY
We have heard your efforts in calling Congress have been helping. They have generated a buzz in DC about the Lyme bill. Two weeks ago, LDA was invited (by Senator Dodd) to brief the Senate HELP Committee in DC. Over half Senate HELP committee members showed up for the briefing, a good response. LDA also set up a briefing of all House staff members in cooperation with the House Lyme Disease Caucus (Smith/Holden/Stupak). The briefing itself went well, but hardly anyone from the specific House Energy & Commerce/Health Committee attended, although we have 103 co-sponsors on the bill in the House to date! The Committee is not listening to its colleagues who support the bill, or to its constituents, or to all those who are sick.

Only YOU can make Congress listen!

From: Pat Smith,, President, Lyme Disease Association, Inc. www.LymeDiseaseAssociation.org
For further bill information, click on Legislation at top of page

[hilly]

Hi Neicy... Yes, it's urgent...and as you've put it with your letter about the poor mum and her daughter, vitally important. I've written to four senators and had one email back today, everything we can do will help. Milly x

[Gator]

Good job! Milly and Niecy!

Thanks for all the info. I sent my comments to the the url you posted and will send other correspondence or telephone calls later today.

We must win on this one!

Hugs,
Gator

P.S How are you doing with MMS?

[hilly]

Gator... well done .. it's good to hear from you and as you say we must win this one. I was at a Lymes Hosp here in the UK today, talking to a mother and daughter. She has had Lymes and co infections for years and has been thro all the usual that we all have. She was one of the last patients to see Dr. Harvey before he retired. She has been so sick and her daughter was born with Lymes and many co infections and has hardly been to school. They are now getting good treatment and are improving. It all goes to show that it is NOT something that can be cured in two weeks of anti biotics. So please anyone who feels they can write to their senators please do... Milly x

I still have'nt started the MMS as I'm on a detox programe at the mo' at this Hosp. My last blood tests showed that I had SO many pesticides and toxins in me.. It all goes back to when I was trying to get rid to the chicken Mites and we used so many horrible chemicals, sprays, powders and so on. and it obviously got into my blood and all over the body..

[jonsi]

Hi Milly,

I tried to leave a message (option 4) for Dingell but the mailbox was full. I will try to select other options and see if I can leave a message and I will call the other numbers. It sure helps to have something to read while leaving these messages, thanks.

The letter to Lisa Marie is beautiful, Niecy. Being so centered on Morgellons, I didn't realize what Lyme's sufferers endure. My prayers go out to everyone.

Itwl,
~jonsi

[hilly]

Jonsi and all ...

If your state is listed, click for contact information. Urge your
representatives to contact their committee chairmen and request a
hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator
on your list, have him/her contact Senator Edward Kennedy (MA),
chairman of the Senate Health, Education, Labor and Pension Committee.
If it is a member of the House, have him/her contact Congressman Frank
Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.

Phone your representatives in their DC offices during regular business
hours. It's quick and easy. The staff will tally all calls they receive.
Suggestions for phone calls to Representatives:

Call only their Washington , DC offices

If you have to leave a voice message, use the sample blurb and remember to leave your name, zip code, and phone number.

If possible, in addition to the info in the sample blurb

Give a VERY brief description of how much you or someone you know has suffered.

Try to paint a picture of the extent of disability on the bad days and of the financial loss to society (disability, special school programs, sick days from work, doctor appointments, etc.).

If you are a doctor, tell how your patient(s) has suffered or your problems due to lack of physician education nationwide.

If a support group, tell how your members have suffered.

Calls first please, but consider faxing or e-mailing a letter to their Washington , DC office in addition to the phone ca




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SAMPLE phone blurb asking Senators for bill support:
“I am a CONSTITUENT and I am calling to urge the Senator to actively support bill S 1708 (Dodd/Schumer/Hagel), The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007. I would like to know if the Senator is signed on to S 1708 as a co-sponsor. If not, please let me know why the Senator is not. Please add me to your list of constituents in support of this bill.” (Clearly give your name and address, spell if unusual or difficult name)




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SAMPLE phone blurb asking House Representative for bill support:
“I am a CONSTITUENT and I am calling to urge the congressman/woman to actively support bill HR 741 (Smith/Stupak), The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007. I would like to know if the Congressman/woman is signed on to HR 741 as a co-sponsor. If not, please let me know why the Congressman/woman is not. Please add me to your list of constituents in support of this bill.” (Clearly give your name and address, spell if unusual or difficult name)

[hilly]

Wow... our letters may have helped... Great news.. ;>))

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284


Millyxx

[carla]

That s great news Milly.
Lets hope things are going to change now.
carla xxxx