Hey everyone, I just wanted to put some recent dates out there so that people don't think the old action alert is over.
It's NOT over. I just now spoke with someone at Energy and Commerce and at Pallone's office.
The phone calls are working! They have someone assigned to research this matter, and they are talking about it right now in D.C.
The bill is NOT dead, by any means, and the phone calls are making quite an impact, so PLEASE, keep them coming. EVERYONE should call once a day, if possible. Just do it. Forward these instructions to friends and family too:
Here's the instructions:
1. Call Congressman Frank Pallone (NJ) 202-225-4671
Chairman of the House Energy & Commerce Health Subcommittee
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.
The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. Mr. Pallone's job is to help patients. (leave your name, address, contact info)
2. Call the US House Health Subcommittee Staff 202-225-2927
Sample Phone Blurb
I'm calling to ask the Staff 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. The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice.
Mr. Pallone's job is to help patients. (leave your name, address, contact info)
3. Call the US Senate HELP Committee Staff (202) 224-5375 Sample Phone Blurb
I'm calling to ask the Staff to ask the HELP Committee Chair to schedule the Lyme bill for a hearing today!
Patients have been ignored. The IDSA members and their Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. (leave your name, address, contact info)
Note: Out of respect, we are not asking you to call the office of Senator Kennedy, Chair of the HELP Committee, at this time.
It IS making a difference, so please keep calling everyone.
Posts: 194 | Registered: Jul 2005
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Once again Pennsylvania and Maryland are topping the list with the most reported cases of Lyme disease so far this year, with California coming in third. And it's still JANUARY!
In mid-December 2007, the Maryland DHMH reported to legislators that they had over 1,000 new cases they hadn't completed or counted. However, the total for Maryland in 2007 did NOT reflect those extra 1,000 cases. Where did they go?
13 states have already reported cases this year... in JANUARY.... and many are cold weather states.
Colorado, which usually only reports a couple of cases per year, if any, already has one on record.
DC dropped from 62 to 13 cases in one year 06-07. Was one of the 13 cases President Bush's case?
Connecticut dropped again (2006-07)- no doubt due to their new fangled, high dollar reporting system that still isn't working properly.
Florida already has several cases reported so far this year, which is unusual.
Guam, Puerto Rico, South Dakota and Oklahoma were the only ones reporting NO CASES LAST YEAR.
Since reporting began in 1980 we have increased from 120 cases a year to over 20,000 cases per year, nationwide. These figures represent ONLY the reported cases.
According to the CDC, for a more accurate figure multiple the numbers by 10. That will provide you with the CDC 10-fold assessment totals and will show what they believe to be closer to the actual number of cases occurring.
And note: 75-90 percent of people with Lyme are being missed using the current standard tests, according to Hopkins and ILADS studies.
These people have little chance of ever being counted, much less diagnosed and/or treated properly, which can result in hundreds of thousands developing late stage Lyme and possibly becoming disabled or worse in the next few years.
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only! So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda
please watch these 2 specifically: *************************************** .. http://www.youtube.com/watch?v=W40ZI1nSpX0 4.44 length story about Alex Hermstad, 14, Iowa, paralyzed and on ventilator slowly dying from Bartonnella and other UNKNOWN DISEASES; her daily life being assisted 24/7.
***************** And if you have friends or family in MD, VA, and DC area, send them to see this Lyme disease documentary. UNDER OUR SKIN, will be showing at the SilverDocs Film Festival in Silver Spring, Maryland, from June 17-23.
Any good links to send to friends with an explanation to encourage them to help?
Posts: 526 | From NJ | Registered: May 2007
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..i made my daily calls!
no. 1 ... heard me say my name, and i'll log your call....
i asked the young man for pallone's email address where we could send him things. i asked if PALLONE HAD SEEN THE 2 YOU TUBE VIDEOS OF PROTEST AT HIS OFFICE AND PATIENT INTERVIEWS OUTSIDE HIS NJ OFFICE.
he didn't know, but said for us to go to pallone's home page:
"We're talking a massive coverup of our epidemic." Opening speech from LDA President Pat Smith. Lyme Rights Protest, Long Branch NJ. May 7, 2008
no. 2 ... she took my name/full address.
no. 3 ... the office i love! today, i got a newbie, SARAH, answering the phones for 1st time on our LLMD bill!!
she told me they've received lots of phone calls on this..
since she was knew i gave her my brief story and talked about health insurances NOT paying for our appts/treatments, etc., and our having to travel out of state for llmds.
i could hear in her voice how SHOCKED she was hearing this.
i did tell her it meant the world to me yesterday that the person i talked to had played the YOU TUBE VIDEOS I SENT OVER THE WEEKEND.
told her their staff needs to see this and learn BOTH AREAS .... the patients with chronic lyme and infectious drs. who deny that CHRONIC LYMIES EXIST AND TREAT UNDER 30 DAYS creating long-term chronic lymies! her phone rang and i let her go.
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Thanks for the push! I made my calls today!
When I called the Senate HELP committee, and got transferred to Health, the guy said the staff is working very diligently on it and he believes "there's alot of resistance from the Republicans". I tried to press on that one but didn't get anything more.
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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i made my 3 calls;
pallone's office woman said she's been taking MORE LYME PATIENT CALLS than the other!!! HOORAY FOR OUR SIDE! ***********************
2nd no. ...she couldn't wait to hang up.
3rd no./ kennedy's ... took my zip code. asked if they were getting many calls; YES, it's ONE WAY...
THE CHRONIC LYME PATIENTS WAY!!!! hooray! ******************************************
i told him too i was sending intern kathy emails with info as well for their designated staff person!
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