posted
URGENT! IMMEDIATE PRIORITY! April 17, 2008 - UNTIL FURTHER NOTICE
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/membios/contact_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
posted
I got voice mail at Dingle and the other one.(?)
Could not get through Kennedy's line because it was busy (off the hook likely) so I sent an email.
The letter from IDSA does sound very compelling. Where is the wonderful and convincing letter that Lyme groups could sign and fax in? Where is the ILADS letter? etc.
So discouraged and so overwhelmed with whole family's illnesses. How much can a person take?
Posts: 339 | From nowhere | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Pinapple...
Good to see you but I'm about to bite someone's head off right now after seeing this letter below. NOT the same on you are refferring to.. another one!
Grrrrrrrrrrrrrrrrrrr....
We NEED to get a hearing to expose the truth.
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This sample letter is for IDiot ducks to send to Congress.
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The Honorable �First Name� �Last Name�
�State Legislature Name�
�Street Address�
�City�, �State� �Zip Code�
Dear �Title� �Last Name�,
I am an infectious diseases physician treating seriously ill patients in and around �City�, �State�.
This letter is to express my strong opposition to Legislative Bill �Bill Number�, which sanctions the use of long-term antibiotic therapy to treat Lyme disease.
In urging your opposition to this legislation, my primary concern is to ensure the best quality in patient care and to protect the public's health and safety.
To this end, I believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called ``chronic'' Lyme disease that are advocated by a small group of physicians.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, fatigue, and difficulties with concentration or memory loss.
Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having ``chronic'' Lyme disease.
Many of these so called ``chronic'' Lyme diagnoses are supported by laboratory tests that are not evidence based and are not regulated by the Food and Drug and Administration.
Even more troubling, physicians who diagnose ``chronic'' Lyme disease often advocate treating patients with repeated or prolonged courses of oral or intravenous antibiotics that have no proven value other than an anti-inflammatory response in some individuals, and which may in fact do more harm than good.
Of greatest concern is the bill's misguided attempt to sanction the use of long-term antibiotic therapy to treat Lyme disease.
The premise for prolonged antibiotic therapy for Lyme disease is the notion that some spirochetes can persist despite conventional treatment courses, thereby giving rise to the symptoms ascribed to chronic Lyme disease.
Not only is this assertion microbiologically implausible, there are no convincing published scientific data that support the existence of chronic Lyme disease.
Rather, carefully designed studies of Lyme disease have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with antibiotics.
A recent New England Journal of Medicine article stated unequivocally ``that there is little or no benefit associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for a properly diagnosed episode of Lyme disease.''
Furthermore, the scientific evidence indicates that long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment.
Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other
Page Two - Lyme Disease Letter
microorganisms, creating ``superbugs'' that cannot be treated with currently available drugs.
In summary, far from improving the patient's quality of life, prolonged antibiotic therapy may actually increase the patient's suffering.
As an alternative to enactment of Legislative Bill �Bill Number�, I urge the committee to hold public hearings on Lyme disease.
Such hearings could play an important role in educating our fellow citizens about the controversy surrounding the treatment of this debilitating condition.
However, in order to ensure that legislators get a science-based assessment of appropriate treatments for Lyme disease, I strongly urge you to invite board-certified ID specialists who support evidence-based medicine to testify at all public hearings.
On a personal note, as an ID physician who treats patients with serious infections on a daily basis, I have profound empathy for patients who are ill and have been told their illness is due to ``chronic'' Lyme disease.
I do not doubt that these individuals are suffering, but many report non-specific symptoms that may be attributable to a number of medical conditions.
Therefore, I would strongly encourage patients who are diagnosed with ``chronic'' Lyme disease to seek an expert second opinion to enhance their opportunity for a correct diagnosis and appropriate treatment.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com) or the American College of Physicians (www.acponline.org).
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
up
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
UP
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Done - and family and friends recruited and harrassed where needed! Onward! : )
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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bettyg
Unregistered
posted
I MADE MY 3 CALLS JUST NOW!! All were very receptive and NICE!! ***************************
Ted Kennedy's staff member said they've had at least 100 calls today!! *********************
Pallone's office said they were flooded. I told them I've had chronic lyme disease for 38 years; 34 yrs. MISDIAGNOSED by 50 drs.
Iowa doesn't have any chronic lyme literate drs. here so I was forced to go out of state for treatment costing me $1,000 travel expenses and $5,000 OUT OF POCKET MEDICAL.
Iowa's BCBS refuses to pay any LYME expenses.
Pallone's staff member ASKED FOR MY HOME ADDRESS! ************************************************
called energy no. who explained we are CALLING SEN. PRIVATE NO. THERE VS. ENERGY COMMISSION NO.
they've been flooded w/calls the last 2 days. before he transferred me over, I again told my above story.
he stated they are very SYMPATHETIC to us and have heard from all over USA on this problem.
got answering machine. I spelled out my name/address/state and told my above story.
in fact, at this time I WAS ON A ROLL and kept going until they said i had 15 seconds left. said bye...end of call. I WAS CUT OFF!
i mentioned we need to get a hearing to get both sides of the issues out there for chronic lyme vs. idsa.
we need more money and cut back money on WEST NILE VIRUS AND BIRD FLU $$$$. ******************************
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Quis custodiet ipsos custodes? Who shall guard the guardians?
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I called bright and early. All but one were very friendly. Pallone's office was very friendly and actually talked to me, got my address. Called on behalf of South Shore Lyme Support group.
I think the grumpy one was commerce and energy number... too bad so sad.
Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Fantastic!!!
They are getting the message!!! You all are doing wonderfully!!!
PLEASE keep up the good work!
PS... I heard hundreds of calls per hour were coming in!
posted
Merrygirl - I too left a message on the answer tape at the commerce one. But then I called back to check with the aide about whether they were really going to get our comments rather than us talk to a live person.
He said yes, but then I started to talk to him because today is the 2nd anniversary of when I got back my positve test results - the same day SF was honoring the 100th anniversary of the quake. I remember going to city events in somewhat of a daze, thinking about coming in with something positive - the equivalent of my own earth-shaking news.
So I talked to the aide about this, and I started crying and I then really told him what my life had been like not knowing what the h*** was going on. He heard me and he was very kind about it, too.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
If I can do it, so can you!!!! My palms are sweaty and my hands are shaking, but I CALLED!!!! I told one person my sorry story and that the bill needed to get on the agenda. They said that lots of people were calling.
So there!!! I did it!
somewhat shy, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Halleluia, my immovable relatives are starting to move. Took me multiple emails over the last few weeks, another email last night, voicemail, text messages and yet another email reminder! I was sitting here just about crying out of frustration with everyone. My brother just emailed me that he was sending faxes now. Still waiting on his girlfriend. Ah, another one just reported in too!
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Made calls and faxed letters, I sure hope it helps.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
IDSA:? Police verso - with thumb turned: with a gesture or expression of condemnation
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I just called all three.
First two quite pleasant fellows; one connected me to a recording after a bit. I gave them just a tiny sketch, self and daughter dx'd with lyme in california, and that even newish doctors here still do not recognize or even KNOW about lyme!!!
Third guy --- well, okay...not bad, but not 'zackly bubbly either, let's say. Told me I was the 700th-and-something caller just today. Said he would note my position but would not write down the specifics.
He also told me 'rumor has it the Bill may not get out of committee because it isn't written well.'
??
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
quoting michelle,
...He also told me 'rumor has it the Bill may not get out of committee because it isn't written well********************************* *************
HOG WASH! EXCUSES EXCUSES!! one very P.O. LYMIE!!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Yeah, I read it and thought it was written quite well!!
He did rather remind me of an insurance hack, come to think of it.
I let him know (politely) what I thought of the IDSA "form" letter.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
5:30 pm, still got a live answer at Pallone's office, very nice, asked where I was calling from, said will pass comments on to Congressman.
The first number, live answer but said we are reaching the congressman's private line and need to call the energy committee, and transferred me there, where I left a message.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Not well written"?
Huh?
That indicates to me ... that the IDSA got to them!
If not well written it couldn't have gotten so many supporters and sponsors.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Tincup: Do you rember which office that was Michelle?
Sure do -- The Energy & Commerce Committee number. The least friendly of 'em all!! He's the one I gave a (polite, of course!) earful to about the IDSA and its wacky form letter!!
M.
Posts: 3193 | From Northern California | Registered: Apr 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
the voice mails all appear to be full...I left a message at the committee one to the effect that we need anti-infectives rather than the idsa idea of treating bacterial issues with anti- depressants and I think I kept the sarcasm a bit in check. well, sort of....
Looks like we clogged up the whole switchboard.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good for you all!!!
Yes.. I just called too .. and all boxes were full. Kennedy's was off the hook as it rang busy right away.
Will be sharing an update and announcement you will want to read. Should be here shortly.. and I will share it ASAP.
posted
So if they think it was not written well, can we file an ammendment?
If we can flood these 3 offices like this, imagine the results if we all called our STATE reps now as well!
Ask your STATE people if they have signed on as co-sponsor, and if not, WHY NOT?
Ask them what will it take to support the bill? What will it take to get Lyme bills on the committee agenda?
Posts: 339 | From nowhere | Registered: May 2007
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bettyg
Unregistered
posted
kudos phyllis for ENLIGHTENMENT of what OTHER, critical bills have been submitted to this health committee!!
of all the bills you posted, all are good, and should have a hearing BUT many of them have had previous hearings also ...
so give our LYME BILL A CHANCE ... OUR 1ST HEARING EVER! ***************
phyllis, you made a good point too!
call, fax, or email your HOUSE REPS & SENATORS TO BE "CO-SPONSORS" OF HR 741 AND S 1408!!!
WE NEED THEM NOW TO COMPETE WITH OTHER BILL WITH MORE SPONSORS ABOVE!
we can make a difference! this is the best money i have spent on making my non-free calls since i don't have a cell phone! i'm investing in my FUTURE HEALTH ...QUALITY OF LIFE! Bettyg
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posted
Hi folks, It's Sunday night, which means tomorrow is Monday, which means it's time to start calling, faxing and emailing. As impolite as it may be to tie up the phones in DC, you gotta admit it's been a lot more rude of them to hold the bill back for so long.
So let's really get another 2,000 calls in to the legislature tomorrow. Our lives kind of depend on it.
Make the calls if you haven't already. Ask friends to do it if you have already called. Fax, email - make noise.
In addition the IDSA opposing HR741, we are also competing for a hearing with hundreds of other bills.
But we've been waiting for 10 years to get a bill passed. In addition to being just plain tired, I'm tired of having my suffering and the suffering of all you wonderful people ignored by the government.
Congressman Pallone is rumored to be hoping to run for the Senate, so we owe it to the voters to let them know how he has stonewalled requests from very sick people.
But, meanwhile, let's keep flooding the three key people with calls, since getting the bill on the House calendar this week would make life so much easier for everyone. Thanks, Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
yes mame; it was on my agenda!
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bettyg
Unregistered
posted
all,
i also think we need to use this NEW info published yesterday to OUR advantage when we email or fax FEDERAL SENATORS/HOUSE REPS!!
TEXAS BORDER PATROL MAKING SURE ALL "COWS" COMING ACROSS BORDER DO NOT HAVE "TICKS" ... THINK IT WAS $5.2 MILLION TO DO THIS YEARLY!! *******************************************
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bettyg
Unregistered
posted
i just called again the 3 offices in 4 minutes!
explained who i was, please put this on their hearing agenda as the bill has been there 10 years with NO ACTION AT ALL.
it's we lyme patients are the ones suffering for this; out of pocket expenses for medical and traveling since IOWA DOES NOT HAVE A CHRONIC LLMD HERE,
infectious drs. wrote congresss, and it's full of 50-75% LIES.
we need to get both sides out on the table and go from there as again, it's us PATIENTS, NO ONE ELSE, that is suffering for this.
yes, our llmds are...but i didn't say that to them.
i asked pallone's man if they'd gotten many calls; YES!
last call to dingle's office ... i got someone who listened and SLAMMED DOWN THE PHONE AS SHE SAID THANK YOU FOR CALLING! manners *****************************
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posted
I don't know how many calls there have been since we began. I hope people keep calling. We need to keep this action up until the protest on May 7th - and maybe even after. Thanks, Elle
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Posts: 819 | From New York, NY | Registered: Oct 2001
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