posted
Remember, folks, we are ALL doing our part to spread the word, each in his or her own way. I commend ALL of you for the work done. By the way, my contribution was submitted on PayPal to fund Leonard Boswell's receipt of a copy of Pam's book along with my message. Thank you for the post.
Posts: 81 | From Iowa | Registered: May 2007
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bettyg
Unregistered
posted
i was going to finally listen to last week's program, and this message came up.
CAN NOT BE OPENED IN DEFAULT PROGRAM;
IT'S CORRUPTED OR HAS DIFFERENCE FILE TYPE !!
anyone run into this also?
i really wanted to listen to the program!!
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I think lymeout explained the reasoning behind the briefing date well.
January/February is such a hectic time for a new congress, and we were advised we may not be able to get backing for this briefing until spring.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I just wanted to share some more of our purpose.
Our Unique Position at NatCap
The leadership and membership of NatCapLyme live and work in the greater Washington , D.C. metropolitan area. Many of us have years of experience advocating for causes on Capitol Hill.
As mentioned before, we have consulted with Congressional leaders, especially those who are already friendly to the Lyme community.
Both their advice and our experience is that this briefing luncheon would be the best way reach the maximum number of Congressional representatives and their staffs with the truth about the Lyme epidemic.
Our book/DVD sponsorship program is also designed to maximize attendance and interest. Your Congressperson will be more inclined to attend the briefing, or send a member of his or her senior staff, if they know that a high-quality book and DVD about Lyme disease is waiting for them at the luncheon.
Your donation to buy your Congressperson a copy of the book or documentary and your note to your Congressperson will demonstrate that Lyme disease is affecting residents of the district or state he or she represents in Congress!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
How This Project Can Reach Our Nation's Leaders
We at NatCapLyme intend to ``follow-up'' with members of Congress about Lyme disease when the new 111th Congress convenes next January.
Having been given such quality resources with which to educate themselves about Lyme (Pam Weintraub's book and Andy Wilson's documentary), we can expect that our nation's Congressional offices will be much more aware of and sympathetic to the Lyme issue than ever before.
Congressional representatives and their staff do respond to well-written and researched books about pressing issues, such as Pam Weintraub's book Cure Unknown: Inside the Lyme Epidemic.
We must remember that many different issues and interest groups compete for the attention of Congresspeople every day.
We can put Lyme disease on the ``front burner'' of their attention now that we have such wonderful resources to leave with them, such as Pam's book and Andy's documentary.
Let's not waste these powerful resources now that we finally have them!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
What Congress Could Do to Help the Lyme Community
Congress wants to take action based on facts, reputation, and research.
In the past, experts on both sides of the Lyme debate have spoken to Congressional committees. Unfortunately, the ideas that ``short-term treatment works'' and that ``Lyme is not a complicated or persistent infection'' have dominated the subsequent research which Congress has funded.
Under Our Skin and Cure Unknown dispel both of these ideas with style and grace. Andy's film vividly shows the failure of short-term treatments and depth of suffering that results for Lyme patients.
And Pam's book explains the scientific reasons why short-term treatment might fail and the desperate need for more and better research into this phenomenon.
Congress needs to be made aware of the failure of the currently-recommended treatments for Lyme disease, the depth of suffering and economic loss which result, and the need to investigate every aspect of this dangerous epidemic.
Our fondest hope is that Under Our Skin and Cure Unknown will inspire members of Congress to conduct investigative hearings into the Lyme crisis. By reaching out to your Congressional representative now and placing these resources in his or her hands, we have a much better chance of having the patients' perspective reflected in those hearings.
Those hearings will result in an official Congressional record from which the government will draw ideas for future action.
If we do not speak for ourselves -- and also allow Pam's book and Andy's documentary to speak so eloquently for us - we allow those academics who believe that Lyme is ``hard to catch, and easy to cure'' to be the only voices heard on Capitol Hill!
And that will prevent more research or meaningful breakthroughs in treatment!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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bettyg
Unregistered
posted
anyone,
i'm going to try to listen to this but couldn't access earlier.
HOW LONG IS THIS PROGRAM so i can plan my time to hear this during DAYLIGHT hours?? thanks all!! xox
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And betty, I finally got to a computer with faster connection and listened to the program, so it is working. As for length, I think about an hour.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
YIPPEE! someone said to delete cookies; i did; and i got directly in this time and just got done listening to this!
Sue vogan radio broadcast ... summary; 55 MINUTES IN LENGTH! *************************
* Bill and Greg * Both are ATTORNEY'S & men's wives have had lyme disease. * Regular check in going thru capitol security. * Lunch time briefly only ... mainly Pam and Andy, director talking. * Why we are buying it for all federal senators/reps.... A way to connect with them why it's SO IMPORTANT, and I want to talk to you when you are in my area back home!! * Andy and pam have reduced the price for both to get to all 535 folks. * * Other groups have gone to wash. Dc, why is this different & historical? * Answer: we've never had powerful stories like andy's film and pam's book. Also, 1 congress is ending; next congress will be starting jan. 09. * They set their agendas for 09 congress 1-09....they can read book and/or watch dvd! * New congress very busy the 1st 4 months... * We have more historical info to give them now; it's cumulative; using a tool to educate them. * We want to bring emotional message home to them. * * LDA ISN'T BACKING THIS THING ... WHY? * Answer: it's bringing to the hill from VARIOUS constituent groups around the USA! Getting all involved. * They were blown away from UNDER OUR SKIN; they decided to do this as a result of after NYC premiere. * Tina Garcia, Arizona pres/lda stating PAT SMITH, LDA, put out email but NOTHING was mentioned about 9-24-08 capitol hill handout of book/dvd. * Our goal is to get solid info on this ... background, etc. by testimony in front of the hill. Bill stated to meet with the senators/federals back in their home states.
* Lyme bills, S 1708 and HR 741, * Is briefing to be used to DISCUSS 2 LYME BILLS!!! ``NO'' ... develop a record to help lyme disease and prevent it, and late-state lyme disease program. * * NATL CAPITAL LYME DISEASE ACCOMPLISHMENTS... * Creating chapters in Virginia and general area... * Goal to combine for education and movement. * Co-hosted booth with psychiatric/ILADS conference. * Getting Montgomery county/Fairfax co. to start LD task force, awareness with health dept. * Presentations to federal agencies holding health fairs to present LD programs and booths. * Working with local university on LD; and created video on LD. * Webmaster, lisa s.........., * How listeners can support; * Call senators home offices' .... Meet w/them about LD, attend or have staffers attend briefing in dc sept. * Good advise from locals at support group meetings. * NE USA problem only .... 200 support groups nationwide. Read pam's book. It's nationwide problem. * Support this briefing.... * Congress doesn't understand how SERIOUS LD is. * They must take interest in this disease for cure, etc. * They come back in dec. to start getting their jan. agendas together; lyme will be on their minds since staff attended briefing or read book or dvd watching it. * What will be asking for in this briefing? * Pay attention; work on getting HEARINGS; been 15 yrs. Since the LAST LYME HEARING! * Needs to be records about LD so various depts.. ask questions, and it's in OFFICIAL GOVT DOCUMENTS... * We want EMOTIONAL SIDE: human toil on useful lives it's taken; can't work; can't enjoy quality of life; bring that message to congress. * Needs to be in record last sentence! * Patients HAVE DIED! Sue's hoping they will realize that. * Families/loved ones altered in terrible ways. * * Sue's had this radio show for 3 years now.....all discussions ONLY ON LYME DISEASE! * If any listeners have questions, call them or email them!! They will answer all. * * Virginia congressman wolf was called about dvd and pam's book; had town hall meeting ....50 expected; 300 came .... LD, prevention, etc. * Bb is being studied in BIO WELFARE. Chat room raised question. * FUNDRAISING .... $17,000 * Money will go directly to PERSON YOU WANT IT TO GO TO!! * If group does NOT reach the goal of 1 book/1 dvd per federal sen/rep. * Alternative plan if you don't give per person... * GIVE TO THOSE ON SUBCOMMITTEE MEMBERS PLUS THOSE DIRECTLY SPONSORED! * DONATE WHATEVER $$ YOU CAN! $1.00 accepted. * Send note with your name for the PERSON IN YOUR AREA...FED! * Netcaplyme.org/congressbriefing or netcap.org * Back AUG. 25TH ...
as i was listening to it, i jotted down some notes; hope this helps those who can't get in or want to take 55 minutes of their time! betty g
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posted
I just received this from NatCapLyme and wanted to pass it along:
It has been over a week since we at NatCapLyme announced the plan for a congressional educational briefing on capitol hill for September 24. The response has been overwhelming and we need your continued support and activism.
Please send and resend the message from August 8 to your members.
This project was conceived of as a way to use two excellent additions to the media discussion about late-stage Lyme disease, and the excitement that could be generated just from their appearance on the scene to reinvigorate the profile of Lyme patients on Capitol Hill. The idea is to show portions of Andy Wilson's moving documentary Under Our Skin and feature the revealing history of the controversy behind the discovery, research and treatment protocol for Lyme revealed in the new book, Cure Unknown: Inside the Lyme Epidemic by respected health journalist Pam Weintraub.
Before moving forward, staff of relevant committees and committed members of Congress were consulted and they affirmed that this is a good idea that will help the Lyme effort.
In a few words, it can be convincingly shown in a very short time that:
a.. Late-stage Lyme disease exacts a terrible toll in human suffering and lost productivity to our economy b.. The current state of research is woefully inadequate, and c.. Congress has the power and should have the will to do something.
Together, we can hold this briefing and create an incentive for members of congress to attend or send their senior health staff member. We can convincingly demonstrate that this is a bipartisan issue that affects every congressional district and every state in the union, and provide needed support for looking beyond the mantra that 28 days of antibiotics treats and cures all Lyme disease.
The program is designed to help all Lyme advocates and hurt none of them. This is NOT an attempt to align with nor intended to compete with any group already working a legislative program, as any specific legislation is not expected to be discussed at this briefing.
We have received negative responses from some members of the community. Of course, this is not helpful in promoting the necessary good relations we need with Congress if we are resolve the problems facing us all. Some have expressed concern that this effort is not aligned with another advocacy group, or some because they think it is. Some say members of congress should buy their own book and DVD if they want to be educated about Lyme.
Our book/DVD sponsorship program is also designed to maximize attendance and interest. Your Senators and Representative will be more motivated to attend the briefing, or send a member of his or her senior staff, if they know you have sponsored a high-quality book and DVD about Lyme disease and it is waiting for them at the luncheon. For this reason Open Eye Pictures and St. Martins press have made then available at a very special price.
Your donation to buy your Congressperson a copy of the book or documentary and your note to your Congressperson will demonstrate that Lyme disease is affecting residents of the district or state he or she represents in Congress!
IT TAKES A COMMUNITY
We need to demonstrate to Congress that Lyme is not just an isolated Northeast U.S. phenomenon and that increasing numbers of constituents from their own states and districts are affected with Lyme, and even late-stage Lyme and other tick-borne diseases. We can't rely on their taking the initiative to buy a book on their own or otherwise learn about the issues unless we provide this incentive. Sending the message from their own constituent and having it come from across the nation in a very tangible way is the kind of grass roots campaign that works.
NOW IS THE TIME! Members are home on recess. They will be coming back to Washington at the end of August for a month and then leaving again for the campaign season. The committees and staff members will begin to formulate their agendas for the next Congress after the election. Now is the time to create the impression that Lyme and tick-borne diseases must have their attention in the early days of the 111th Congress.
The National Capital Lyme & Tick-Borne Disease Association is simply trying to make a contribution to the overall effort and be a good citizen of our village. We are not opposing any group and there is no reason to question our motives. This has taken a tremendous volunteer effort. If you do have a comment, or suggestion for making this briefing more successful we will certainly appreciate it . Give us a call. Remember, critical congressional staff believes this will be helpful and we expect a letter from members of congress to their colleagues supporting attendance at the briefing.
Please, time is slipping away. Let's get the DVDs and books to send with personal notes to your own Senator or Representative.
MORE GROUPS PARTICIPATE
We have had a great response from many groups with Lyme related concerns, such as the Lyme Induced Autism Foundation. There will be a table for literature and brochures from Lyme and tick-borne disease interested groups from around the country. Send us your brochure and information to display and pass out. We want to demonstrate that YOU are out there, from all over the U.S.A.
More questions may be answered in our interview on the radio program In Short Order. You can click on the picture or the link below to hear the show about the Congressional Briefing. You have permission to pass this along.
CATCH THE RADIO SHOW
We'll be back on the show this coming Monday, August 25 for a progress report and to answer more questions.
posted
Just a reminder to listen to Short Order tonight at 9PM EST for updates on their progress:
Lawyer Gregg Skall, National Capital Lyme Disease Association legal counsel, will be returning to Short Order on Monday, August 25th at 9PM EST on www.contacttalkradio.com to discuss how things are progressing with the Congressional briefing to be held on September 24
Call in with questions at 1-877-230-3062. Gregg will be prepared to answer your questions on the Lyme Briefing so call in with all your questions and tell Lyme concerned friends around the country to call in too.
Posts: 205 | From northern california | Registered: Apr 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
On September 24, 2008, the National Capital Lyme and Tick-Borne Disease Association will be holding a Lyme disease briefing luncheon on The Hill. This grassroots effort has not been seen in almost fifteen years and is sorely overdue.
``It's time for a fresh approach and new information,'' says Sue Vogan, host of the In Short Order radio show. ``This Lyme disease is nasty business and victims need some help from those on Capitol Hill.'' In Short Order has been bringing Lyme disease information to listeners for three years and is the only Lyme disease broadcast like it in the world.
Randy Sykes, with the Lymecryme website states, ``I hope the whole Lyme disease community will pull together to support the efforts of the National Capital Lyme and Tick-Borne Disease Association. It's an opportunity to bring about a much needed change.'' He further claims, ``The Lymecryme website was created to bring about a public hearing. This now is possible because this group and individuals are working together.''
The National Capital Lyme Disease Association has been in existence since 2001 and is a key source for information. They serve the nation's capital Lyme disease community with a support group and now, with this Capitol Hill luncheon briefing.
The author of ``Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease'' with Dr. Lesley Fein, comments,'' Lyme disease is so prevalent that 1.7 million Americans are estimated to be infected. From 10-20% of those bitten by an infected tick acquire chronic Lyme disease.At the 2001 Albany, New York, legislative hearing, the numbers of those chronically infected with Lyme were stated as 10,000. The disease has spread to virtually every state.
Yet doctors continue to be given the misinformation that two to four weeks are adequate to treat bacteria that, within hours and days, can spread to heart, brain, joints, muscles, tendons and the nervous system. In several states as many as half of the exploding deer tick is now infected with the Lyme spirochete. And in several states as many as half of the exploding deer tick population is now infected with the Lyme spirochete. People who go outdoors into long grass, bushes and leaf litter risk getting bitten by a tick. Only half of them will see the bite, and of those bitten, only half will get a rash.
What is more, the commonly used Lyme test picks up no more than a third of the cases of Lyme disease. The better test picks up, at most, two thirds of cases. And then there is the treatment problem. Doctors are still being told that two to four weeks of oral antibiotics cures all Lyme disease, even in the case of heart block and brain disease. The small group of physicians who continue to promote their unchanged view on Lyme disease treatment have been investigated for conflicts of interest and financial gain by Connecticut's Attorney General Blumenthal. Delayed and inadequate treatment increases the risk of contracting chronic Lyme disease, costing more than two billion dollars a year in disability, loss of jobs and the medical costs of the chronically ill.
Those who adhere to the over diagnosed, over treated theory often ascribe continuing illness to "post-Lyme syndrome," a condition for which there is not a shred of scientific evidence. Often, patients' continuing illness is misdiagnosed as chronic fatigue syndrome, attention deficit disorder, fibromyalgia, or depression. Worse, their condition is frequently misdiagnosed as multiple sclerosis, Parkinson's Disease, lupus or Alzheimer's. I have met dozens and more of those who later discovered their problem is Lyme.
With an escalating tick population, lack of diagnosis and inadequate treatment, how can we not have an epidemic of unrecognized chronic Lyme disease? We can no longer focus solely on ticks and ignore medical treatment for those who become ill.''
``In order for our voices to be heard,'' Vogan says, ``We must band together for this historical effort.''
The National Capital Lyme Disease Association wants to present your Congressmen and Senators with a copy of ``Under Our Skin'', the Lyme disease documentary by Open Eye Pictures, and the book, ``Cure Unknown'', by Pamela Weintraub at this luncheon briefing, together with your personal note expalining why they should have it. It is their sincerest hope that members of Capitol Hill will see the importance of the issues that will be presented and schedule a Congressional hearing.
To learn how you can participate and to sponsor a representative, please visit www.natcaplyme.org.
posted
I wasn't able to listen to the broadcast at the time it was aired today, so hopefully they will have it archived soon so those of us who missed it can listen to it. Was anyone able to listen to it this evening?
Posts: 205 | From northern california | Registered: Apr 2008
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posted
Monte joined Gregg and Bill on this show. It is worth it to listen to this broadcast just to get to know her. Her warmth and passion are infectious!
The update is that things are going very well, speeding up.
The most important new things:
Monte and Gregg are encouraging everyone to send in messages, regardless of whether you donate! They want your story to get into the hands of your congressman. If you want to write more than allowed on the website box, you may mail it to the organization. But do try to keep it to a page.
Someone suggested that we include a display of brochures from all the lyme support groups throughout the country. Again, this visual, like the personal messages, will confirm the scope of this disease! They are encouraging everyone to send in brohures, and a display will be prepared!
A full screening of the film will be held at the historic Avalon Theatre in DC the night after the briefing. Legislators and their staff are invited, as well as interested citizens. No charge!
I'm sure I have forgotten a lot. Can anyone else add to this?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Do listen to it, and please donate - they need donations still asap! -karen
Posts: 205 | From northern california | Registered: Apr 2008
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bettyg
Unregistered
posted
thanks for the link; i'll listen tomorrow when i come here during daylight hours!
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posted
One more thing - they are planning on setting up a display with brochures from support groups from across the country, to help illustrate how widespread the lyme epidemic is. If anyone can send them a small handful of brochures or fliers from your local lyme support group, that would be very helpful. The address to send them to is:
NatCapLyme P.O. Box 8211 McLean , VA 22106-8211
And they still need sponsors from many states, so please make a small (or large if you can) donation asap - www.NatCapLyme.org/congressbriefing -karen
Posts: 205 | From northern california | Registered: Apr 2008
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posted
I hope people will still notice new postings to this thread now that it is pinned to the top. I know the idea of pinning a thread is to keep it up top so it is noticed, but I think since a lot of the pinned threads don't get updated very often, a lot of people just pass them by to look for new and updated threads down below.
Posts: 205 | From northern california | Registered: Apr 2008
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bettyg
Unregistered
posted
cs,
fyi, when i see stickies; i look for a SOLID YELLOW FLAG; if it's there .... i read them!
also on this post, i'll say what i took the time to do on another one today...
$17,000 divided by 535 members = $31 per MEMBER ***********************************************
since they both are giving huge discounts to make it available to all of congress!!!
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I spoke to Monte earlier today, she said they were a little over halfway there, and the books sponsored so far are on order. If more donations and sponsorships come in, and they aren't able to get all of the books on time, they will be hand delivering the late arrivals to them, so it is still important to try to get as many of our congresspeople sponsored as possible.
I decided to bite the bullet and make a second donation, enough to cover any California congresspeople not yet sponsored, plus others - hopefully other people will be willing to do the same for their states. No, I can't really afford it, but then again, I feel like I can't afford not to either, so that sentiment won out and I dipped into our small savings for this. Hopefully some others will be willing to step up and do the same.
And more notes to congresspeople are needed, even if you are not donating - you can e-mail a personalized note for your congressperson to Monte at [email protected], and it will be delivered to them with their copy of the book and dvd.
It isn't too late to donate, please consider helping this historic effort out in any way you can, thanks folks! http://www.NatCapLyme.org/congressbriefing -karen
Posts: 205 | From northern california | Registered: Apr 2008
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When we were visiting Congressional offices this week, one staffer said that she had spoken to a constituent with lyme earlier that day, telling her story and asking that they attend the briefing. The staffer committed to attending!
Your communication and activism make a difference!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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