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» LymeNet Flash » Questions and Discussion » Medical Questions » Voices of Lyme - Action Alert - KEEP CALLING

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Author Topic: Voices of Lyme - Action Alert - KEEP CALLING
BorreliaBrain
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Forgive me if this doesn't belong in medical - and forive the shameless self promotion to boot - [Big Grin]

But it is good to get the viewcount up for these videos as fast as possible - if we could get it featured on youtube (a long shot) - it could draw some real attention to the cause.

So click here:

http://www.youtube.com/watch?v=oYtrHoGVlo4

and please pass the link along, if you can. We have to get this man's attention, somehow, someway. Thanks.

BB

[ 10. June 2008, 05:20 PM: Message edited by: BorreliaBrain ]

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Keebler
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-

BB - thanks for the link. I'm confused by your comment, it IS on YouTube now. Or does it have to win numbers to stay?

You might consider changing the title of this tread to the name of the clip: Voices of Lyme - Messages to Frank Pallone - Video (4:40). You could also post in the activism section.

This seems to have been taped at a recent rally. Nicely done ``Person on the street'' Comments from a variety of patients or family members who are all well spoken and sincere.

(I will add a caution to viewers who have vertigo: be sure both feet on are the floor with you watch this as the wind moves the camera around a bit. Some car horns in the background.)

Most comments are 5 - 20 seconds so it's not just one person and that adds to the message that this is not so rare. I liked the close-up shots so you could really see each person's face.

This is poignant, for sure.

-

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BorreliaBrain
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Yes, Keebler, it is on youtube now - but if it gets enough hits or 'views' - it will be moved to the front page of Youtube, for a while, and if it is (though this is a reeeeeaaaaaaal long shot), then it would get hundreds of thousands of views.

Oh, and please don't forget to rate it, if possible, when you view it (5 stars please), because a high rating also helps it get into the "featured" section on youtube.

Just trying to get the message out. Glad you like it.

BB

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BorreliaBrain
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Great to see it's getting a lot of hits - how about some comments?
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njgirl14
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Excellent!

Have you emailed this to Pallone and all his opponents?

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Tracy9
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OH MY GOD it is INCREDIBLE!!!

Amazing job, I love it!!! It's great!

THANK YOU!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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bettyg
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quote:
Originally posted by njgirl14:

Excellent!

Have you emailed this to Pallone and all his opponents?

BB emailed it to the LINK I POSTED IN MAY 21-23 ACTION ALERTS; to the SENATE HELP phone no. folks !!!


go read my post there in case you can help our lyme case please .... ACTIVISM...tincup's post!!
**********************************************


tincup's been calling the one phone no. with 8 PHONE LINES AND PLAYING THIS TAPE FOR EACH OF THEM; it cuts off one; she continues on another line!!!! [bow] [bonk] [group hug] [kiss]

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BorreliaBrain
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Well thanks everyone. I did email the link to an email that belongs to one of Pallone's staff members. I Hope that means she will watch it, and maybe maybe even pass it along to him...

But we shouldn't assume so. She may be so inundated with material now that she might not even look at this clip.

If someone among you lives in Frank's district and is a constituent of his, you can email him. Just go to the "Contact" area of his website (http://www.house.gov/pallone/contact.shtml) and fill in the email form.

If you can, please email him this link (ttp://www.youtube.com/watch?v=oYtrHoGVlo4). If enough people email and call him and tell him about this video, maybe he'll watch it. Maybe he'll be curious enough to watch it... who knows?

So call, people, and tell him to search on youtube for "Frank Pallone Lyme". Also email him, if you can, and send him this link: http://www.youtube.com/watch?v=oYtrHoGVlo4

Let's keep the pressure on him. It may just work.

Also, someone pointed out that he posted a video on youtube himself talking about some congressional stuff (not a mention of Lyme). His video is here: http://www.youtube.com/watch?v=kR0bI5nSiRs

I suggest everyone with a youtube account should go to this video and leave a comment (politely) about Lyme and HR741. Maybe he'll read them.

(Again, sorry this is in medical, I expect to get nailed by moderaters soon... but I wanted people to see this)

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bettyg
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BB,

GREAT JOB! good way of letting others know to come to activism and i bet lou bachman gives you a big HUG TOO! [group hug] just like he did to tincup when she posted a no no here!!


it's vital we stay on top of this, and calling, emailing, faxing, snail mailing daily to keep the pressure on AND FOR ALL OUR CORRESPONDENCE TO BE "COUNTED" in the pros/cons!!


IDSA is out in force!!! every phone call we make; they make more. they won't tell us who is ahead .... just the pressure is REALLY ON THEM TOO HEARING FROM THE "OTHER" SIDE! idsa. [cussing] [cussing] [cussing]

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Lymetoo
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AWESOME!! Let's help this get plenty of hits while we're on the phone to Frank!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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up... we need more hits!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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kam
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I watched the video. It is a good start.

But, if I were Pallone I would have tuned out after the first 3 comments...same o same o

The lady with the long blond hair towards the end's message caught my attention.

Also if I were a person who was watching this as an outsider...it would not have held my attention.

Again, I think the idea is a good one. The film work is good. The background noise is not good.

Wondering if editing in parts of what the attorney general found re: the IDS report, parts of other video's about the children suffering, parts of video's about how long term abx gave health back, parts of how most docs are illiterate, how many doctors we have had to see, how long we have been waiting to see this bill be passed, how he is holding this up and not even giving it the opportunity to be passed, and how it most likely will die if not set in motion by a certain time, etc would have more appeal to the general public.

Just a thought. Sorry, I know it is a lot of work and I know I would not be up to it at all.

Appreciate the work you have done. Thank you.

Now you know why I am not getting paid to critic video's HA!

I also know it took a lot of hard work to do what you have done. This is greatly appreciated. The idea is a good one.

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BorreliaBrain
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Yeh, I can't possibly put all that in one vid, much as I'd like to. Plus there are plenty of other Lyme videos on youtube. I'm afraid one video can't be all things to all people.

Besides, I'm not trying for mass appeal, i'm trying to get a message across to him. I'd listen to it if all those comments were directed at me.

In fact, there is another vid of Pat speaking at the protest, which I also hope he'll watch. We'll see.

For now, let's try to steer his attention towards it, if possible, somehow.

I called Pallone's office today and also the Health Subcommittee, and they told me that he's still debating what to do, and the issue is not closed. So the phone calls are working (I hope). Keep it up

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Lymetoo
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^
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BorreliaBrain
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People, I just spoke to Pallone's office - the phone calls are working, to some extent. The bill is NOT dead yet, and they are actively discussing it and have assigned someone to work on it full time. And if you do call, be sure to mention to the person on the phone to ask Frank to go to youtube and search on "Pallone Lyme" - he'll get an earful if he does... [Big Grin]

They NEED to keep hearing from us. In my humble opinion, every Lymie should call everyday. This is the time for action, before the IDSA gets more ammo in place.

Here's what to do:

Here's the instructions:

1. Call Congressman Frank Pallone (NJ) 202-225-4671

(F) 202-225-9665

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.

(I sooo expect to get busted any day... sorry moderators... : )

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bettyg
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..

please go to ACTIVISM and read what i've done and important info i've gotten on WHO TO EMAIL WITH "FACTUAL LYME INFO AND GOOD YOU TUBE LYME VIDEOS"!!!

WE ARE MAKING HEADWAY...read my today's post over there in THIS same post and also the MAY 21-23 ACTION ALERT!!!!


bb, when you call them, ask them if they showed your you tube PALLONE PROTEST TO THE PERSON COMPILING ALL INFO ON OUR LYME BILL???

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bettyg
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..

please go to ACTIVISM and read what i've done and important info i've gotten on WHO TO EMAIL WITH "FACTUAL LYME INFO AND GOOD YOU TUBE LYME VIDEOS"!!!

WE ARE MAKING HEADWAY...read my today's post over there in THIS same post and also the MAY 21-23 ACTION ALERT!!!!


bb, when you call them, ask them if they showed your you tube PALLONE PROTEST TO THE PERSON COMPILING ALL INFO ON OUR LYME BILL???


the designated staff person WATCHED what i sent them over the weekend!!!! whoopie to do !!! [Wink]

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BorreliaBrain
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That is VERY good news Betty. I wonder if Pallone himself has really seen these? There's no way to know....

WE have to figure out a way to get to this man. Keep up the phone calls etc... but there must be other ways, too...

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bettyg
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bb, thank you; i made progress again today.


DO YOU LIVE IN PALLONE'S DISTRICT? IF NOT, PLEASE FIND SOMEONE WHO DOES OK!!!


mail them the 3 you tube videos:

your interview w/patients,

someone else's photo album/signs;

and pat smith sounding off to pallone's staff person!!!!
***************************************


posted 11-06-2008 04:25 PM
--------------------------------------------------------------------------------
..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:

http://www.house.gov/pallone/contact.shtml

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

i told him i would send him the 2 pallone protest you tubes there. YES, that would be ok sending the DIRECT LINKS vs. attaching thing!!


EDITED: HE ACCEPTS EMAILS ONLY FROM HIS NJ CONSTITUENTS....PLEASE SEND HIM THE 2 PALLONE PROTEST YOU TUBE VIDEOS....thanks!!! xox


Lyme Disease Patients Protest at Rep. Pallone's office Part1

http://www.youtube.com/watch?v=QEn4WZIeJGk
(4 minutes)

Lyme Rights Protest, Long Branch NJ. May 7, 2008
Opening speech by rally organizer, lots of patients, signs and cheering!


Lyme Disease Patients Protest at Rep. Pallone's office Part2

http://www.youtube.com/watch?v=s2EGXg2lMxo
(7 minutes)

"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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