posted
I just did - told them my story, that the infections are spreading everywhere, that we are facing a public health crisis and that's why we need the HR741 Lyme bill moved up for a hearing. The aide took down my name and address and thanked me for calling. The number is 202-225-4671.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin or all viewers,
can someone look up sen. ted kennedy's dc office phone no. so we CAN CALL HIM TOO??
outstanding idea robin!!! i sent your idea out to my lyme group list after getting your reply at home!!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hi: I too called his office directly. They were very pleasant and nice and were not at all p''d off at me.... notwithstanding the advice of bettyg's "mystery activist.." that we not call them.
I understand bettyg's point-- but with all due respect to the higher up mystery activist, this is OUR democracy, and our congressmen have large staffs-- paid by OUR tax dollars--- to answer OUR taxpayer purchased phones..... I have suffered Lyme and paid BIG taxes for 20 years... and they can answer my 30 second phone call...and be polite to me--- once every 20 years.....
Congressional staff people routinely answer the phones for large corporate interests who are not necessarily based in their district... so... nuff said.
I live in a neighboring state, and have friends in New Jersey... soooo.... it behooves them to be polite to me.. I have also donated to many campaigns of congress people who are not in my district... so they can never know who might be a donor.....
WE must exercise our constitutional rights to contact our government officials... or else the corporations will do it for us.... and then we will not get a government that protects people.... and Lyme vicitms...
Posts: 696 | From New York | Registered: Aug 2006
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posted
It would be nice if we knew the real politics going on at the top, for both House and Senate.
What do they really need in order to move the bills to hearings?
Is it a matter of them hearing from enough reps? Is it a matter of seeing how many co-sponsors there are?
Are they expecting to hear from regular constituents of the state or beyond? This question in reference to Lymedesign saying they had received only a couple calls. Is that good or bad, from our standpoint?
Is it the private view of the chairmen? Is it lobbying behind the scenes?
Is what's going on normal for the course or are the bills being held up at this point?
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
do any of you remember the woman who used to work in congress who helped with LYNNE'S LYME PETITION, and gave advise? she explained how things worked there.
robin, can you go back around 1 years time to LYNNES LYME PETITION POSTED HERE, and ANN-OHIO kept bringing it up so it wasn't lost by new posts!
i'm leaving shortly to see my hip surgeon for 1 yr. checkup that i had to cancel last week due to my bronchitus cold virus... thx
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NOW Robin 123... NOW is the time!
Go for it!
And yes.. timing IS important. We get advised by the folks in the know.
So your idea was great... we just need to have the timing right.. which no one knows till we get the oifficial word.
Also we are trying hard to keep organized and not have people wasting precious energy if not needed.
posted
Thx, Tincup - I just read the alert about what's going on with the Committee listening to the IDSA.
Seems to me now is also the time to tell them in our calls just what the impact of the IDSA's policies have been on our lives - like no diagnosis, misdiagnosis, undiagnosis - like no treatment, very little treatment, etc, and what's happened to us because of all this.
Btw, today, April 18 is my two-year anniversary of when I found out my test results. It was also the 100th anniversary of the San Francisco earthquake. So while the city was celebrating(? - do you celebrate a quake?), I had my own earth-shaking news come in.
And the 25 years it took to find out out I have Lyme is due to IDSA/CDC policies. As I'll be making these calls to these congressional offices on my anniversary date, I think that'll play a part in how I feel as I call them...
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
tincup, i was wandering too why we were NOT to call the VIPS on this directly like robin/others did! i was told NO NO over and over.
tomorrow i'll call those 3.......
robin...way to be on the ball!!! xox )
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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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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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