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» LymeNet Flash » Questions and Discussion » Activism » Legislative Forum March 28th Agenda Updates.

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Author Topic: Legislative Forum March 28th Agenda Updates.
LPurdy1040
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Lyme Legislative Forum

Date: March 28, 2009 Updated Agenda

The Legislative Forum Committee has updated the Agenda[http://www.natcaplyme.org/images/pdfs/ForumAgendav2.pdf] Click Here for Agenda PDF or copy and paste link.

Our Keynote Address will be delivered by Congressman Frank R. Wolf who demanded Lyme hearings in the 111th Congress

[http://wolf.house.gov/?sectionid=223§iontree=7,223]

[http://wolf.house.gov/?sectionid=84&parentid=8§iontree=8,84&itemid=1238]Click Here for Mr. Wolf's Statement on the Floor of the House of Representatives

Among the Discussion Leaders: Dr. Daniel Cameron (ILADS); Dr. Ahmed Kilani (Clongen Labs); Pam Weintraub (science journalist); Kris Newby (researcher/producer); Pam Andrews (LDA-Eastern Shore of Maryland); John Coughlan (Massachusetts Lyme & Tick-Borne Disease Awareness Association); Linda Lobes (Michigan Lyme Disease Association); Lisa Torrey (LifeLyme); Gregg Skall (NatCapLyme); Mark Harkins and John Mashburn (Womble Carlyle and former Congressional staff)



There is still time to register for this important Conference and opportunity for you to be heard on Lyme legislation and other Congressional activities.

[http://www.natcaplyme.org/LegForum] Click here For More Information & To Register



[http://www.natcaplyme.org/LegForum





~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
[email protected]
www.natcaplyme.org
Phone & fax: 703-821-8833
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Any information provided is for the reader's own evaluation and is not offered as and should not be considered medical advice. A licensed physician should always be consulted when considering medical decisions and nothing herein may be used in place of advice from your personal physician or other healthcare professional. Links to other sites are provided for ease of research only. Information on those sites is the product of the website author and represents the opinion of those who publish the sites and does not necessarily reflect the opinion or judgment of the National Capital Lyme & Tick-Borne Disease Association

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bettyg
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linda,

what was changed without my having to go in there please? thx.

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LPurdy1040
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Hi Betty

It's a more detailed list of what to expect the day of the forum. It has times etc. listed.

Hugs
Linda

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lou
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Nobody from LDA or LDF?

This seemed like a good place to find a way to work together. But, if they don't come.....

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bettyg
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thanks linda,

breaking this up to see at a glance:


Among the Discussion Leaders:


Dr. Daniel Cameron (ILADS);

Dr. Ahmed Kilani (Clongen Labs)

Pam Weintraub (science journalist);

Kris Newby (researcher/producer);

Pam Andrews (LDA-Eastern Shore of Maryland);

John Coughlan (Massachusetts Lyme & Tick-Borne Disease Awareness Association);

Linda Lobes (Michigan Lyme Disease Association);

Lisa Torrey (LifeLyme);

Gregg Skall (NatCapLyme);

Mark Harkins and John Mashburn (Womble Carlyle and former Congressional staff)


so linda, is that YOU speaking too? good for you [Smile]


lou brought up a great observation, that NO ONE FROM LDA PAT SMITH OR LDF will be there to help in the JOINING OF EFFORTS AS ONE ... vs. all these separate entities.

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LPurdy1040
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I agree with Lou's observation as well. But, both LDF and LDA were contacted and asked to be there. Both declined.

The Panel people are just discussion starters to help stimulate the discussion among those in attendance, but we are not presenters. Just to clarify that. If you read the entire agenda on the PDF it lists who is presenting and who isn't.

Hugs
Linda

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lou
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Linda, do you support the current lyme legislation?

[ 03-18-2009, 06:58 PM: Message edited by: lou ]

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LPurdy1040
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Hi Lou

I didn't set up the meeting, so I can't tell you the exact details. But, I think LDA is not attending due to a conflict in schedules. I know NatCapLyme was in direct contact with LDA. If you contact NatCapLyme I'm sure they can give you more details on that.

I'm planning on going because I feel it's going to be constructive. I'm not sure what you are talking about when you say "Why then are there going to be omissions in the list of attendees?" Nobody was excluded from coming. Everyone is invited from what I understand. Is that what you are asking? I'm not sure what other people are thinking will happen, but I'm hoping this will be educational and informative.

Hugs
Linda

You deleted your question as I was answering it. You changed it to another one. So my reply to your next question is in my next post. sorry.

[ 03-18-2009, 08:01 PM: Message edited by: LPurdy1040 ]

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LPurdy1040
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To be honest, The Michigan Lyme Disease Associations board hasn't voted either way on this yet. So I really can't answer that question until we further discuss the bill at our board meeting.

Hugs
Linda

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Tincup
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Hey BG...

You said... "lou brought up a great observation, that NO ONE FROM LDA PAT SMITH OR LDF will be there to help in the JOINING OF EFFORTS AS ONE ... vs. all these separate entities."

I happen to know the reasons why the LDA and possibly the LDF won't be there, if they don't go. I speak for neither group... these are just observations.

In my opinion, both have excellent reasons for not being able to attend.

Had all the Lyme groups been asked BEFORE the event was planned.... or at least before it was announced to the public... if the dates involved were ok.. I am sure it would have been helpful to many groups.

However, even if that had been done...

At the current time, these two groups, IN MY OPINION, would still be excused with blessings, for very valid reasons.

And again, that is in MY opinion.

As for who/what groups support the bill and the patient's efforts...

Those who are signed on to the list below have supported the bill.

Everyone had a chance (a couple of years at a minimum) to decide if they want to support it and sign on... or not.

http://www.lymediseaseassociation.org/FederalBillHR741.html

Groups have been sent invitations and information recently to show support again this session and it has been posted in many locations for all to see.

From what I understand, the new list will be out soon showing who supports the bill.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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tc, thx for your explanation of the above!
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LPurdy1040
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Hi Everyone

Just to let everyone know NatCapLyme has additional updates to the Agenda for this weeks upcoming Legislative Forum.

http://www.natcaplyme.org/images/pdfs/ForumAgendav2.pdf

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lymeout
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I'd like to explain about the date selected and why no one was notified prior to that. March 28 was one of only two dates open at the GMU venue. The other date was in conflict with another publicized event, I think.

The reason we did not notify anyone prior to this was to avoid further conflict - if one had been available for one particular date and the other group for a different date, we would have been put in the position of choosing one over the other! That would not have been good!

As for keeping it at GMU in spite of the narrow choices, we tried to select a place that offered convenient and reasonably priced lodging nearby - not an easy task in the DC area. The main campus in Fairfax doesn't offer the convenience.

We realized that there might be conflicts, but we felt that surely there were capable leaders from each organization who could have represented the group.

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docjen
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lymeout...thanks for that.

Regardless of who, what, when, where, sensitivities flared, feelings irked.....I think this is more important than ME and more important than my LYME and *I* for one plan to attend! And am looking forward to it!

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cs
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Would love to hear how this went from anyone who attended, any updates? [Smile]
-karen

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Kayasdad
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It went great and it was a wonderful and educational experience!

--------------------
Visit www.caringbridge.org/visit/kayaraigh http://www.lymelightassociation.org LIGHTING THE WAY TOWARD LYME LITERACY. An up and coming organization with the goal of educating the public on Lyme disease and associated tick borne illnesses.

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bettyg
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please fill us in on some details; if NOT PUBLICLY, would you type up notes and send us by
PRIVATE MESSAGE or regular email??

big thanks to all who went today representing ALL OF US LYME/CO-INFECTION PATIENTS! [group hug] [kiss]

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bettyg
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up for juicy details please? lol [Smile]
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lymeout
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I'm still sifting through everything, as I am sure everyone else is. It was a long day packed with discussion. Because I am one of the organizers, I would prefer that others weigh in with comments; but I did want you to know that a stenographer recorded all discussion points and outcomes; and those will be sent to all attendees as well as posted on the NatCapLyme website.

I'm sure you will hear positive and negative comments because it was a democratic process and all were encouraged to voice their opinions and concerns.

I do want to say though that I learned a lot from others sharing their projects and activities. We have a very bright and talented community!

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Tincup
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A person attending the program is without his coat and car keys. Seems this may be a case of mistaken coats.

Please read the following and if you know who may have switched coats, please contact the group so the person can get their keys.

`````````````````````````````````````````````

From NatCap: (I edited out the name and personal phone number of the person)

As will always happen when a large group convenes, someone will lose an item or two. We have two items that must be returned to their owners.

Someone picked up XXXX topcoat by mistake and left theirs behind. His is a brown Ralph Lauren topcoat with car keys in one pocket. The coat left behind is a size 12 women's brown trench coat.

If you have XXXX coat or if yours is the coat left behind,

Please call NatCapLyme at 703-821-8833.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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shazdancer
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Thanks, Lymeout, looking forward to hearing what was said!

-- Sharon

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bettyg
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yes, sharon; thank you; will be interested in recording the transcribed notes posted on nat cap brought here!!

thanks for taking the time to reply...

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Tincup
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Just saw this..


FOR IMMEDIATE RELEASE:

CONTACT: Monte Skall
703-821-8833; [email protected]

GMU Helps Lyme Disease Victims Unite for Change

REP. FRANK WOLF KICKS OFF DISCUSSION

Washington, D.C., March 28, 2009.

More than 160 representatives from Lyme disease organizations in 20 states assembled today at an all-day Legislative Forum facilitated by George Mason University in Arlington, VA, and openly debated topics vital to the future of our nation's health.

The National Capital Lyme and Tick-borne Disease Association and Turn the Corner Foundation sponsored the event.

Congressman Frank Wolf of the 10th District in Virginia opened with an inspiring keynote address and fielded questions from participants regarding progress urgently needed in Lyme education, diagnosis, treatment, and research.

The forum provided education on legislative processes and then opened the floor to all attendees to combine knowledge and resources in order to identify common needs and objectives, and formulate action.

The agenda included a brief presentation of the recently introduced federal Lyme bill, H. R. 1179, but primarily the forum provided a venue for discussion on a broad range of topics to identify what is needed on multiple governmental fronts to address the growing epidemic of Lyme disease.

Professors Wallace Warfield and Sandra Cheldelin of the George Mason University Institute for Conflict Resolution and Analysis (ICAR) facilitated the lively and productive discussion.

Lyme disease is one of the most misunderstood and controversial diseases in U.S. history and is growing at an alarming rate of many thousands each year.

It is frequently misdiagnosed and ineffectively treated by physicians who lack adequate education about the poor state of diagnostic tests and the high rates of relapse after minimal treatment.

Victims are uniting to seek long overdue change to improve their lives, including research to cure this debilitating disease and accurate diagnostic tools.

For details and outcomes of the Lyme Legislative Forum, and for information on Lyme and other Tick-borne Diseases, visit http://www.natcaplyme.org

--END-

National Capital Lyme & Tick-Borne Disease Association
[email protected]
www.natcaplyme.org
Phone & fax: 703-821-8833

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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I'd heard earlier that Congressman Wolf did an excellent talk and folks were really impressed with it.

I also heard that there was some sort of a resolution or something that folks finally all decided to support the federal bill.

If so, that is GREAT news!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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BTW- Did that poor fellow get his coat and car keys back?

I hope so!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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boy, would i be steamed to have a car and NO keys to go home! yes, i'm wandering also.
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lymeout
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I was not able to be in the room for all of the discussion, but I checked with others who were. There was no resolution regarding the bill, but there was good discussion on both sides.

I hope the discussion notes will shed light on this. I think the whole issue of the bill is understanding the risks and determining if they are worth taking. We know that there are risks; but those of you who have worked so hard on this bill know from experience that you cannot eliminate them all!

I think that when people review the presentations and discussions, they will feel better equipped to weigh it out and make a decision.

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valymemom
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You are correct that Congressman Wolf impressed upon the large group an urgency for legislation/a commitment to get something done in this congress.

However, while there was a lot of discussion about the legislation process and the current bill.... and there was unanimous consensus for a unified approach when addressing Congress.....this was not the kind of meeting where any resolutions were made.

Our participants were a mix of over 160 folks who have been working for years to bring lyme issues "into the light" (the theme of the successful recent gala), and new folks who are just beginning to navigate their family member's health issues.

Like my friend Lymeout, I worked with 10 others on the NatCap board to plan the forum, and I am still processing all of the long day's discussions.

I look forward to reading the thorough notes that were taken all day long by one of the facilitator's student's (and in real time flashed on one of the large screens.)

These notes will be posted on our website.

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valymemom
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On a personal note - I also wanted to say how inspiring it was to hear about all of the local activism that gets done on a daily/weekly/monthly basis in each community.

We have such committed activists who have worked well/established relationships with their schools and health departments. So many have brought awareness/education of tick borne diseases to their communities through developed posters, pamphlets and powerpoints.

When we broke into small groups, we discussed our many areas of agreement and our desires/ways to move forward.

Although my adult sons did not stay all day, I was glad that they got to feel a part of this larger community.

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bettyg
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thanks to all of you who attended and sharing notes with us all! [Smile] xoxox
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Tincup
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Well, darn.

I thought maybe the DC group would have finally decided to support the bill and work with ALL of us across the country to pass it.

In my opinion, anything less hurts us all. They have some wonderful people and really good activists in DC...

BUT... divided we fall... and divided we hurt our own selves and everyone who comes down with this disease in the future ...

And divided we bring glee and joy to the IDSA. NOT my idea of the best thing to do.

I had hopes. I really did. I thought this meeting was to bring patients together so there would be a "united" front coming from it?

And now you indicate that didn't happen?

[Eek!]

If I may ask... if you aren't supporting the bill process... STILL...

What are you doing.. or what are you all waiting for?

I am glad everyone got to chat back and forth and share ideas and have good discussions about education and research and the legislative process...

But we are losing time (YEARS) while we nilly willy wait to see who will help us all hit the big time... and who will drag their feet or fight it.

It is obvious DC wants to be involved in the legislative process.. I mean all of a sudden having two meetings in about 6 months or so...

But if they aren't in support of the bill... what are they wanting to do? HOPEFULLY not mess with it!!!

You know... this has been going on, not for a little while... but for years... enough time to make a stand publicly EITHER way.... for sure.

If the Board of Directors can't agree... you may need different ones who can so you can move forward.

And all the while, we wait and wait... and people continue to suffer... and patients don't have a voice... and we are losing our doctors. And as we all know...

People are dying.

We really need to poop or get off the pot.

And if someone doesn't support it.... for Pete sake.. just say so.

That is no crime.

Just TELL patients they don't and why they don't. That way the rest of us who do support it can move around the blockades (the IDSA and our own patients not supporting the bill) and go forward to....

Get 'er done.. without interference!

BTW- I hope the guy got his car keys back and isn't still standing in the parking lot. And I hope the park ranger in DC guessed the right day for the cherry blossoms to bloom.

I'd not want to be in HIS shoes if he was wrong!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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I don't understand what the risks are in supporting this bill - I thought it is crafted to move us forward.
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OptiMisTick
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ABSOLUTELY!

The only risk is in NOT supporting it!

Have you all enjoyed NOT having any research go our way for the last 11 ( ~ or 35 ~ ) years, NOT having a voice at the National level?

NOT getting your medical bills paid because "there is no research that supports blah blah blah"

and NOT having any money in the bank, or NOT sending your kids to college, because you are so broke paying what the insurance won't pay?

How about NOT being able to work up to your full potential or NOT being able to work at all because you can't get treatment because the research is NOT there and so on..........

How has that worked out for us?

The only RISK is in NOT supporting the Lyme Bills -

- - - - in the House, and soon to come, in the Senate!

OTM

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OptiMisTick
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As I said, how has it worked out, all these years, with NOTHING BEING DONE?

Has it worked out for you all?

How many of you have sat and reviewed 500 Lyme research papers, and realized ~ NONE ~ of them will benefit your family? ~~I have~~!

How many of you have sat in the DC medical library reviewing the last 500 NIH grants and realized NONE of the NIH grants looked like a CURE was coming any time soon, in fact nothing looked REMOTELY like CURE research was even going ON? ~~I have~~!

Like I said, how has this worked out for everyone?

Hasn't worked out ANY way I can see it, for anyone on OUR side.

I repeat, The only RISK is in NOT supporting the Lyme Bills.

I am sorry if someone brought in from the outside at the conference went OOGA BOOGA and raised a doubt, MushroomMan, and maybe that was what they were supposed to do, after all,

~ But after the best hands in Washington DC have fine-tuned this BILL, the people who are actually IN the game and not looking in from the OUTSIDE, I think I will go with ~~ THEIR opinions.~~

If you feel it's worked out real well for you, this past 11 years, then you needn't say or do any more! Status quo for you!

But for those of us who think it's been really hellacious:
~ to watch children too sick to go to school,
~ and adults approach dementia,
~ with thousands of new Lyme patients in ONE state in ONE year
~ while watching special interests line their pockets
~ and reading about loss of a character in the UNDER OUR SKIN film
~and planting another tree for another Lyme person that has passed
~ and you can write the rest -

I repeat ~ ~

The only RISK is in NOT supporting the Lyme Bills -

- - - - in the House, and soon to come, in the Senate!

OTM

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docjen
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Just one quick word....I really feel like the attitude that you are either with us, or against us is not healthy or productive for anyone.

My biggest takeaway from the legislative forum last weekend was that HR1179 (or any legislation) is one piece of a bigger strategy. Legislation is an important piece, but only one. We need to be a united voice on ALL issues related to lyme, be it support for federal legislation, federal government regulation, federal research, local or state legislation, requests for legislative action, calls for hearings or investigations, requests for program letters, etc etc etc....the list goes on and on. And the FACT that the list goes on and on is the GOOD NEWS! There are LOTS of ways that we can affect change, in addition to introducting legislation. THIS was the biggest and most promising message I heard at the forum, and this is what is exciting to me.

People will disagree on strategy or priorities, but we are all ultimately looking in the same direction. Please try to consider that people that disagree on principle, are not necessarily themselves unprincipled.

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poppy
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Good reply, docjen. I think everyone wants what is in the legislation. But many realistic people understand the IDSA and its friends in high places are doing and will do everything they can to either prevent it from passing or turn it into something that hurts us.

If the people who are asking us to support the bill blindly were instead putting together strategies to counter this expected opposition, and could assure the lyme community that the bill would not be changed in ways that came back to bite us on the butt..... That would be a better way of getting support for the bill. No one can guarantee that this is safe. All they can do is be prepared to fight the subversion attempts that WILL come.

So, please don't make this bill a way to drive wedges. Blind faith is not a good operating method.

I don't see how a forum to discuss the legislation could be inappropriate. There was much to learn about the process. Activists who want legislation but do not know the fine points of the process are going to get nasty shocks.

Where are the details, backup material, other help for lymies to use in supporting the bill? Make it easy for people to help if they want to. Is there an organized plan, or does everyone just do their own thing?

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poppy
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And by the way, LPurdy made a presentation at the forum that was impressive. Twenty years of activism in her state, lots of good projects. Amazing dedication.

Others who reported on their own activism were inspiring. It is useful every now and then to hear reports from activists around the country who continue to do good works. Wish we could give them all an award, or at least frequent pats on the back, and offers of help.

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OptiMisTick
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Correction to my post, I said

~ and reading about loss of a character in the UNDER OUR SKIN film

that should have been -

~ and reading about the loss of a person who starred as a character in the UNDER OR SKIN film.

On re-reading it, it didn't look right.

But I am just curious, Poppy, as I had read above or was it elsewhere, that Michigan was being pointed to as an example of what could go wrong.

Was that before - or after LPurdy's activism and projects?

Anyway I understand how nice it is when Lyme people get together and have the chance to interact.

It's always nice to learn about new things if you haven't learned about them already, in the past 11 years or more of trying to pass a bill.

I am glad that newer folks, or folks that weren't paying attention to the legislative process during those years are learning about the process now.

I would say the folks who have been intimately involved with the bills and the legislation all along, though, pretty much are well educated on the whole process and the ancillary concerns as well, so I would guess the "Activists who want legislation but do not know the fine points of the process are going to get nasty shocks" are not a part of the nationwide groups of people who have been working on legislation all of this time, hmmmm?

I have not met anyone who falls in the category of "people who are asking us to support the bill blindly" since every year there have been plenty of explanations for those who cared to pay attention - - but I have met a lot of people who haven't paid attention for 11 years or more.

To them I say - Welcome Aboard!!

Once again, for those who were not paying attention, two sites are available with information that will enable a clearer understanding for those who have not gone there yet:

http://www.LymeDiseaseAssociation.org - and click on "Federal Legislation" right near the top,

or go to

http://www.cwork.com/ and have a long look at what people who have worked hard, year after year, have put together to enable understanding for those who are unfamiliar.

As far as sharing strategies, that would be - - with whom - the people who were actively working against the Bills that were proposed year upon year, - or the people who flew in out of nowhwere to propose alterate bills that got scrapped, and blew up the Bills that had good chances of passing - - or who?

I am somewhat disappointed, now that I am hearing more about this conference. For some reason I am getting the impression that it went further in planting doubts in people's minds than it did anything else.

I guess that is an easy thing to do if one has not sat and read the bill, read and learned more more about the legislative process, interacted with one's legislators year after year, and understood a little more about the various parts of government that are related to health concerns, all these years.

I do applaud the folks who genuinely went to learn and who shared information with one another that will help them on a regional and local basis.

I know that there are many places where activism has been lagging or the doctor problems have not yet hit, or insurance companies are not currently using the lack of research to deny payments - as is going on in our neck of the wood, and its' always nice to see those folks step up to the plate.

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lymeout
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As I heard and understood, there was no major disagreement over the intent of the bill, just concern about language leaving too much room for interpretation. We did hear that such simple things as a misplaced comma or a poor choice of preposition can have an impact.

However, as poppy and docjen said, we need to look at the bigger picture. One person who shared her experiences at the local level talked about working with the public health department. She said that, even though they didn't agree on everything, they chose to work together in the areas where they did agree. That has become my benchmark as I process everything I learned and chart my own course of activism this year.

I think we all AGREE that we need the help of congress and government agencies - there has been abuse of policies and there is ongoing controversy. This calls for government action.

What I think I heard from those with Hill experience is;
We need to present a common, or unified message about lyme disease. And we need to EDUCATE, EDUCATE, EDUCATE those who have the power to help us!

We got a lot of advice on how to get that message to the right people, and I hope that the report being prepared from the notes will yield a blueprint for this; but in a nutshell, I would sum it up like this:

The message needs to be widely disseminated , must be done ASAP and must be ONGOING!

I think we have a unified message. If we looked at brochures developed by the various groups, we see the same information. Another area of AGREEMENT! So far, so good.

Now comes the area where there is lack of unity - the bill. Some people can't bring themselves to make those calls asking their legislators to co-sponsor the bill because they feel it is risky. I would hope that this group of people will join in the education campaign, using the ideas that were presented at the forum (will be outlined in the report). You don't need to ask anyone to support the bill, just focus on educating!

The reason you want to do this is that there IS a bill. If the bill does get out of committee, you want your legislators to read it from YOUR POINT OF VIEW! They have skills for language. They DON'T have knowledge of lyme! If you give them that, then you have improved our chances of any markup, amendments or whatever going OUR way, thus reducing the risks.

Working together in areas of agreement. An Education Campaign. That should be our common mission.

By the way, another thing I want to share - an invited former Congressional staffer who had experience on earlier bills -talked about the value of the phone call blitz. She said that the interns who answer the phones came to the staffers after one such blitz and wanted to know what was going on with this issue. She said that those interns will be tomorrow's staffers - seeds were plantd - GRASSROOTS ACTIVISM works in small ways and big, in short-term and long.

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poppy
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"I am somewhat disappointed, now that I am hearing more about this conference. For some reason I am getting the impression that it went further in planting doubts in people's minds than it did anything else." quote from optimistick post


Then you have the wrong impression. This is reading bad intentions into it that were not there, and is divisive. Why aren't the useful aspects of this forum being recognized? Is powersharing an impossibility in a volunteer activist group? Can it not be seen that special talents abound in our group and we need to use them all?

How about living up to your name, optimistick? This is a pessemistic view of what was a useful and educational event.

Yes, there has been a great amount of work, heroic work, over the years on trying to get a lyme bill passed. And the people who have been slaving away at this have not been thanked adequately. THANK YOU.

But the doubts do not come out of distrust of other lyme advocates who have good intentions. They come out of seeing everything rigged by the opposition to hurt us.

Lymeout has provided a much better reply than I have, so please read it carefully, several times if necessary. We all have the same goals for improving the situation for lyme patients. Why are we not seeing an effort to join forces and assume the best intentions in others with these goals?

[ 04-02-2009, 10:05 AM: Message edited by: poppy ]

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bettyg
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lostgurl posted this elsewhere on something diferent ... bringing it here as it's talking about 3-28 event!


http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/433637-free-helpfor-you-and-others

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LPurdy1040
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For those that were asking about the Coat and Keys they were found. All is well.

The forum I felt was wonderful many thanks to NatCapLyme for hosting this event. It was very educational and inspirational.

Thank you Poppy for your nice comments and kind words. I didn't feel it was a presentation. I, just like many others were just talking about things we have done in our states.

Optimistick - I have read through all the posts that I could find regarding this meeting and I'm not sure what you are referring to in your post above where you mention "Michigan was being pointed to as an example of what could go wrong."? If you could show me or copy and paste what you are referring to I might have a better understanding of what you are talking about.

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OptiMisTick
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I think it was on the post that someone took off, wasn't it?
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mushroomman06
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The post was removed.

I removed the post, it brought about the wrong impression about the Forum and helped fuel our united front in a negative manner.

I am DEEPLY SORRY for this to have happened!

I would never work against the bill, but now realize the challenges and that there is a risk, but doing nothing is worse, it is a beginning and you hope it leads to all the originators of the bill intend.

The Forum was educational and an eye opener for me. I am a greenhorn to the uphill battle that is at the fore front and the Forum has helped direct the energy that I will put forth.

There was no sides taken at the Forum, only straight up the middle information was supplied to us and now we must follow thru.

So many have done so much in a positive manner at there State level, they must be commented in the highest of highest ways.

I have been in life threating situations in the past and now am in one with Lyme.

If not for having and staying in a united front at those times in the past, I would not be here today for the Lyme challenge that lies ahead. Being united is the only way!

I hope the complete text and dialog of the Forum is made and can be viewed by those who are in our united front.

Until then the http.mdjunction supplied above by bettg is a good follow up.

It was my understanding that one of the things the Mich. group had been able to do at State level turned out to go against what they had orginally had hoped for.

I am sure someone out there would know who there group leader might be and some info. could be provided. She is one of those who has accomplished so much within the Lyme movement and I look up to.

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LPurdy1040
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Hi Mushroom

It was me that was at the meeting. I wish I would have gotten to meet you, maybe we did but I just don't realize it? I hugged a lot of people that day. Please don't apologize for removing your post. I'm sure you didn't fuel anything in a negative manner. You probably stated your views and opinions and there is nothing wrong with that.

You are exactly right when you say no sides were taken at the forum. Everyone in my opinion just talked openly and honestly which has been needed in this community for a very long time. Everyone was excited and energized about moving forward as a united front. I personally wish more people would of attended so that they could of seen this for themselves.

What I think you are referring to is the comment I made about Michigan holding Public Hearings and we were promised a Blue Ribbon Committee and instead they tested a bunch of Lyme Patients, the tests were negative and they once again said we didn't have Lyme. During this time one of our doctors was under attack. The State said he was over diagnosing and treating Lyme. If the committee had of done what they had said, it could of saved our doctor. Because of this we lost many doctors who were treating Lyme and decided it was to big of a risk to continue treating.

So to answer your question Optimistick, "Was that before - or after LPurdy's activism and projects" This was before.

Together we can all make a difference
Hugs
Linda

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bettyg
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i'm learning more each time i come to read the updates; thank you all for sharing.

mushroom man, i open mouth insert foot a lot here ... so welcome to my club! i'm currently trying to fix a problem from my neuro lyme lack of judgement. so don't feel bad; we all make mistakes. [group hug] [kiss]

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mushroomman06
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LPurdy1040

You are very inspiring and offer
so much energy and knowledge to the Lyme epidemic and what I like to call the The Lyme Movement.

All the attendes, speakers, and presentors at the Forum where as you, positive in manner and offered direct approaches,

I did not get to meet you, maybe are paths will cross sometime in the future.

I did speak with you husband and can't wait to see the car make that first lap.

The incident that you mention, Blue Ribbon Committee, is the one I had previously tried to mention in a post.


Mushroomman

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LPurdy1040
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Mushroom

Thank you for your kind words. I too was impressed with everyone that spoke.

Sorry we didn't get to meet, I'm sure I'll paths will cross sometime.

I'm glad you were able to speak with my husband. I didn't realize he told anyone about the car lol. He must be more excited about it then I realized.

If you ever need anything please know you are always welcome to call or email me.

Hugs
Linda

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bettyg
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more input/feedback from mdjunction lyme site from attendees:

http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/433637-free-helpfor-you-and-others#440129


04/05/2009 05:13
dharma79
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Posts: 468
Member

OK...To make your life even easier still!....

I have gone through the effort of transposing the phone numbers of ALL the Energy & Commerce members we need to contact from the directory onto a Word doc...which I will be happy to send you via email.
**********************************************************

In the attachment I will include the E&C phone list(phase 1), a list of Appropriations member(phase 2)...this list has hyperlinks, and some of the sample key talking points and letters.


This is an enormous task and we really need as much help as we can get. ***********************************

Please help...there are a lot of names on that list who desparately need to here from you and me....We all need to get in on this, please!
***************************************

PM me with your email address if you'd like a copy of this list and I'll mail it off tomorrow...


from betty; if you are NOT a member there, it's free; join; sending pms is easy to do there too!

only difference is when you send one; the reply is NOT on the same page as ours here; they are separate ...


i hope you will join in to help calling these folks!! xox [Smile]

bettyg, iowa activist

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pmerv
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People who have been working on federal and state Lyme bills now for over 10 years have a pretty good idea of what we can ask for, how to phrase it, safeguards, fine points etc. We are not flying blind, here. And yes, IDSA and others will be out to protect their turf. That's what happened last year when IDSA got to Cong. Pallone who consequently wouldn't let the bill come up for a hearing.

Why should IDSA want to share power with us when they already have everything just the way they like it? Free access to NIH and CDC, conversations behind closed doors. This bill gives patients a seat at the table and a voice for the first time. It promotes transparency and ensures accountability. This is why IDSA doesn't like it.

For people who are not aware of the history of the federal bills, I have been posting a blog of sorts on the CALDA website, www.lymedisease.org. Look at Action Alerts under News.

I have not got to 2009 yet, but am working on it.

There is a lot of language in the bill to protect our side and to counter expected opposition, as Poppy says. We also have an extremely dedicated author who well understands our issues and will stand up for us against attacks. That's the kind of author you want in this situation - and he might not be here forever. Think about that, too, when you think we can afford to delay another few years.

On my blog you can read about bills that help and bills that hurt. These were not surprises, even at the time. We got hurt because certain people wanted those bills in spite of their damaging features. They rationalized and continue to rationalize that the bills (now laws) really help, when the truth is that they don't. This confuses people so you think you can't judge whether a bill can hurt you or not.

Someone could try to mutilate the federal bill and what recourse would we have? We could resist the changes, or we could kill the bill. We have strong and educated authors. The stronger our collective voice, the more spine our legislators will have to give us what we want. If we waffle and some say they don't want the legislation, that gives our enemies an opening where they can drive their wedge in and split everything apart.

The LDA has made it super easy to support the bill. Just go to the website and it is all there. LDA's LEGISLATION PAGE http://cwork.com/

Go to the CALDA website if you are interested in the history of the bills and other articles about legislation.

--------------------
Phyllis Mervine
LymeDisease.org

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