From: National Capital Lyme & Tick-Borne Disease Association
To: All
As a group leader in the Lyme community, we want to let you know about an important educational luncheon briefing on Lyme and Tick-Borne disease being planned for our senators and representatives in Washington, D.C.
Right up front we want you to know that we can't do this alone, we need your help!
We are asking for your support.
To get this message out to you and Lyme support groups around the county promptly, we have sent it by bcc.
A member of our event committee will follow up with a personal telephone call soon, to answer any questions and discuss ways that we can work together.
Also, our counsel will be on the Sue Vogan radio show Monday night at 9 PM EDT, and will take call in questions about the event.
We ask that you send this message to the members of your support group so that they can participate.
The most important item is that everyone meet with their senators and representative within the next two weeks while they are home for the August recess and urge them to attend the briefing.
If they cannot attend personally, they should send their senior staffer involved with health issues.
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.
^ Please cut here and forward to your members. ^
Lyme Briefing for Congress on September 24
We Need Your Help!!
What we are doing
Our community has an historic opportunity to brief Congress on Lyme disease.
With the help of Senators Dodd and Lieberman, the National Capital Lyme and Tick-Borne Disease Association has a luncheon briefing scheduled in the Senate Russell Office Building on September 24.
All members of Congress are invited.
Speakers will feature Andy Wilson, director of Under Our Skin, and Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic.
� Telephone, email, write a letter, or best of all, schedule to meet with them in person in their home district office while they are home on recess in August.
� Ask them to attend the briefing.
If they cannot attend, request they send their senior staff.
Congressmen are the most responsive to requests from their own constituents.
Your voice is vital to success!
Attached is a point paper to aid you in your discussion.
* DONATE:
� Sponsors are needed to provide the book Cure Unknown and the full length DVD of Under Our Skin to all 535 members of Congress.
� You can even include a personal note to your own congressman!
Or, you can send your donation and note to NatCapLyme by mail to our PO Box.
� Within days you will be able to make your contribution and send your message on-line.
We need donations by Aug. 30.
It will cost $17,000 to provide copies to all members of Congress.
NO DONATION IS TOO SMALL!
Why it's important
It has been over fifteen years since the US Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form.
Every two years a new congress is formed.
Lyme disease bills have been introduced repeatedly, but none has resulted in action.
We wish to raise awareness and request a new congressional hearing so that our legislators can facilitate unbiased research.
To quote Pam Weintraub in Cure Unknown, "...if we are ever to unravel the mysteries of Lyme disease and find a cure, it is science--pure and unadulterated--that will lead us home."
The release of the documentary film Under and Skin the book Cure Unknown present the Lyme community with an unprecedented opportunity to educate our federal elected officials about the disease and the incredible toll it takes in human suffering.
Let's all work together toward this important goal that will benefit everyone affected by Lyme and Tick-Borne disease.
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
Attachment #1:
Blumenthal IDSA investigation findings and settlement release May 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care.
They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification.
The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
``This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,'' Blumenthal said.
``My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists.
The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
``The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel.
The new panel will accept and analyze all evidence, including divergent opinion.
An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity.''
Blumenthal's findings include the following:
* The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
* Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
* The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
* The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve ``consensus'';
* The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
* The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time.
In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary.
The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence.
It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.
Blumenthal added, ``The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.
In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.
As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
``Our investigation was always about the IDSA's guidelines process -- not the science.
IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office.
Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.
``This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines.
This review should strengthen the public's confidence in such critical standards.''
THE GUIDELINE REVIEW PROCESS
Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel.
The IDSA must conduct an open application process and consider all applicants.
The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.
Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman.
Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch.
Brody authored the book, ``Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry.''
To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties.
The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website.
The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.
Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence.
At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.
Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.
The panel's final report will be published on the IDSA's website.
ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION
IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease.
Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists.
The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.
IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings.
In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.
The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language.
Both entities, for example, dubbed symptoms persisting after treatment ``Post-Lyme Syndrome'' and defined it the same way.
When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to ``strengthen'' its guidelines' impact.
The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.
The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.
The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.
In a step that the British Medical Journal deemed ``unusual,'' the IDSA included in its Lyme guidelines a statement calling them ``voluntary'' with ``the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances.''
In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.
Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.
Contact: Christopher Hoffman or Tara Stapleton 860-808-5324
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
Part 3 of 3
From: National Capital Lyme & Tick-Borne Disease Association
To: All
Here are the attachments to send to your members along with the message, if you choose to participate.
Many thanks.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
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
Attachment #2:
Talking points for those contacting Congress
Lyme & Tick-Borne Disease Talking Points
(citations available for all points)
1. Lyme disease is the fastest-spreading infection spread by ticks, mosquitoes, or insects.
The Centers for Disease Control and Prevent (CDC) records an average of 20,000 new Lyme infections each year.
However, the CDC also says that only one in ten cases which meet its strict surveillance criteria are reported, meaning that at least 200,000 new infections occur each year.
Another study by the Mercer University School of Medicine found that Georgia family physicians diagnosed Lyme disease at a rate 40 times greater than the surveillance case rate reported to the CDC for the same year.
Bottom line: we do not know how many new Lyme infections occur annually, but it is likely to be in the hundreds of thousands, with millions already infected.
2. Lyme disease has been shown to cause tremendous suffering and disability.
One study found that chronic Lyme patients have the quality of life of someone with congestive heart failure or osteoarthritis and suffer more impairment than someone living with type II diabetes or a recent heart attack.
The CDC reports that children form the group at greatest risk for infection, especially boys between the ages of 5 and 9.
The future of our country is at great risk for the profound disability created by Lyme and other tick-borne infections.
3. Lyme disease has been shown to mimic a variety of serious health problems, including multiple sclerosis, Lou Gehrig's disease, stroke, meningitis, Guillain-Barre syndrome, Parkinson's-like symptoms, and dementia.
Several studies have associated the formation of Alzheimer's plaques with the presence of the Lyme spirochete.
Researchers at Columbia University in New York City are exploring a possible link between Lyme and autism, another epidemic of unknown origin afflicting our children.
Learning more about tick-borne infections such as Lyme disease may be key to unraveling the cause and cure or many other serious health conditions.
4. The Congressional record on Lyme disease was last updated in 1993.
Since that time, science has uncovered more about the daunting complexity of the Lyme bacterium and its ability to cause great suffering, but no concrete advances have been made in the areas of prevention, testing, and treatment, especially for persistent symptoms that do not respond to a single course of antibiotics.
Congress needs to refresh its record on the devastation caused by this disease and the lack of any progress in providing doctors with the clinical tools they need to better treat their patients.
5. On May 1, 2008, Connecticut's Attorney-General Richard Blumenthal concluded an 18- month investigation of the process by which the Infectious Diseases Society of America (IDSA) drafted their 2006 treatment guidelines for Lyme disease.
AG Blumenthal found that the authors of the IDSA guidelines possessed numerous financial conflicts of interest which may have influenced their treatment recommendations, possibly to the point of restraining trade.
He also found that the Society itself violated its own internal ethical policies by doing the following:
a) Failing to conduct a proper conflicts of interest analysis for the proposed authors of the 2006 guidelines;
b) ``Enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee''
(quoted from AG Blumenthal's May 1 press release about this matter);
c) Tolerating the dismissal of an author from the 2000 panel who dissented from the IDSA's position on chronic Lyme in order to project a false image of ``consensus'';
d) Preventing the ``appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded''
(quoted from May 1 press release);
e) Portraying ``a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings.
In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy''
(quoted from May 1 press release).
In addition to possessing personal financial conflicts of interest, the 2000 and 2006 IDSA Lyme disease panelists were found to have "refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease'' according to AG Blumenthal's report.
In doing so, their guidelines quoted only about 2% of the 18,000 medical studies available about Lyme disease at the time, and some 50% of the studies they quoted were their own publications.
6. Attorney General Blumenthal's investigation raises serious and significant questions about the Infectious Diseases Society of America's management of the Lyme disease crisis and the ways in which the CDC, the National Institutes of Health, state medical boards, insurance companies, and individual physicians rely upon the IDSA's work.
The lack of fruitful research in the areas of Lyme disease testing and treatment stems in part from the IDSA's refusal to hear, let alone embrace, differing opinions on the seriousness or chronic nature of some Lyme infections.
It is time for Congress to hold hearings on the issues surrounding Lyme and Tick-Borne disease.
Too many Americans are affected and debilitated.
We need a forum for serious and unbiased discussion and investigation of what needs to be done to provide progress for the growing and desperately-sick community of Lyme and tick-borne disease patients.
Love, Light, & Health, Jennie
Posted by bettyg (Member # 6147) on :
URGENT ... something to think about!!!
last night pat smith had someone post her most ACTION ALERT about our 2 lyme bills in congress, etc.
sept. 24 is this briefing....
sept. 26 is WHEN CONGRESS ADJOURNS according to pat! ***********************************
there is NOT going to be enough time to do this on raising this huge amount of money!
lyme families are BROKE as is ... timing is just off in my opinion after reading about both DEADLINE DATES!!!
when i read pat's note last night, i thought she might mention something about this NEW DEVELOPMENT ABOVE; but NO SHE DIDN'T!
i'm just stating the obvious in my neuro lyme mind... 3 wks. to sway congress' opinion!
Posted by lymeout (Member # 8045) on :
I encourage everyone to listen to this show tonight. I think it will answer most of your concerns, and most certainly, you can ask your own questions! If you miss it tonight, you will be able to access it through the natcap website: www.natcaplyme.org
From the Sue Vogan radio show:
Lawyer Gregg Skall, National Capital Lyme Disease Association legal counsel, will be on In Short Order this coming Monday, August 11th at 9PM EST on www.contacttalkradio.com to talk about the historical Lyme Briefing for Congress 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.
The Experts of Lyme Disease: A Radio Journalist Visits the Front Lines of the Lyme Wars - order at www.lymebook.com In Short Order www.contacttalkradio.com The ONLY dedicated Lyme disease broadcast
Posted by Robin123 (Member # 9197) on :
Is Sept 26 the cut-off date for the Lyme bill? Are we then expecting that Congress is going to do something with the Lyme bill after the Sept 24th briefing? What is the briefing expected to do re the bill? If the 26th is the cut-off date, what isn't the briefing any sooner? Could someone explain the timing of what's happening with the bill?
Posted by lymeout (Member # 8045) on :
Robyn, If you get a chance, go to NatCapLyme.org and click on the Sue Vogan interview with Gregg Skall. Gregg discusses the purpose of the visit and the status of the bill.
As far as we know now, the bills are off the table. But Nat Cap's goal with this briefing is to ask for a hearing, at which a record of testimony- human impact, research, medical community response, etc - would be recorded.
Our congressional record has not been updated since 1993! Hopefully, an updated record will lead to either the resurrection of the bill or tailoring of a new one.
It has been Gregg's experience that having a record such as this is a tremendous help in the legislative process.
He also explains the timing of the hearing - which is just before recess. Pam's book and Andy's film are two of the most powerful educational tools we have at this time.
We want to put them in our legislators' hands - hopefully filled with messages from their constiuents-putting lyme disease at the forefront in their minds as they go home, where they will meet some of these people face to face.
Do I sound like West Wing rerun? As a baby boomer, I have not lost all of my idealism.
I know that our government deals in many shades of gray (and black); but I do believe that sometimes they DO the right thing, beacuase it IS the right thing!
We knew that Rep. Wolf was already a sponsor of the lyme bill when my daughter and others visited him.
But what resulted from that meeting was a legislator who was committed to doing more than just signing his name on a bill.
He is now actively committed to doing everything in his power to sort out the lyme mess and clear the way to better prevention, diagnosis and treatment for his constituents.
I would like to clarify the book/dvd donation thing. Initially, the goal was to put these materials into the hands of the health committee members, funded by our organization and sponsors.
The thought of extending to all of Congress was a spontaneous inspiration - a potentially powerful way of connecting suffering individuals across the nation to their lawmakers.
It is not a goal that MUST be met fully. We will be sure that books/dvds get to every legislator for whom we receive a message and donation.
Therefore, every legislator may not get one. That's okay! Maybe the lucky ones will share with their colleagues! (I'm not THAT naive!)
I would never want anyone to donate to this, or any other project, if it causes financial discomfort or if they don't believe in it.
I have had to choose from the many projects over these past 5 years, where to give of my time and money.
When the CALLS TO ACTION come, I have not been able to travel to give physical support beausee my daughter needs me at home
But I have made the requested phone calls. My husband and I have donated to LDA and Nat Cap as a part of our Christmas giving (in our children's honor).
But there are other financial requests that I have had to choose not to participate in. I know my reasons and am at peace with them.
I would hope that no one feels obligated to participate in this project in any way if they are not comfortable with it!
We are a tapped-out community! No one of us can do everything. So we pick and choose.
I chose to support this project because it is in my backyard! I think that is what each of us does daily - the best we can in our circumstances.
These observations, thoughts, opinions are my own and do not necessarily reflect those of any other organization or person.
[ 12. August 2008, 07:24 PM: Message edited by: lymeout ]
Posted by bettyg (Member # 6147) on :
lymeout,
please break up your entire last post into SHORT paragraphs for us neuro lyme folks; i could read some but NOT all!!
please use PENCIL, 3rd box to right of your name and then break it up into 1-2 sentences since you are a wordy person!!
triple space between paragraphs and that really helps our lyme minds; i do want to read what you posted, but get tired and NO ENERGY to break up so many posts!! big thanks!
also, can someone post a link to LISTEN TO PROGRAM THAT OCCURRED LAST NIGHT ... we can hear what we did NOT last night! thanks.
Posted by lymeout (Member # 8045) on :
Betty,
I hope this is better. You are right about my being wordy! One sentence is sometimes two lines long!!
I checked websites to see if the radio broadcast is up yet. It isn't. It should be on the the website: www.natcaplyme.org when it is ready.
Cindy
Posted by bettyg (Member # 6147) on :
cindy, thanks for breaking that up.
i look forward to hearing the link you posted!! Posted by lymeout (Member # 8045) on :
In case you missed it last night, click on the picture or the link below to hear the show about the Congressional Briefing.
We'll be back on the show on Monday, August 25 for a progress report.
mms://contacttalkradio.soundwaves2000.com/ctr/inshortorder081108.mp3
Posted by lou (Member # 81) on :
Do we know which room and the specific time this will take place? How will the legislators find this out?
Posted by docjen (Member # 7510) on :
I have been to many Congressional briefings before, and it is a GREAT way to get members of Congress educated on a given issue. When Congresspersons are informed by their constituents that it is an issue of importance to them, they WILL send members of their staff to attend the briefing.
Getting a Congressional hearing scheduled is a MAJOR MAJOR achievement!!! Please give the National Capital group all your support. I'm sure it took a LOT of leg work to get this scheduled and it would be a large step forward in educating our Washington representatives!
Posted by cs (Member # 15270) on :
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.
National Capital Lyme & Tick-Borne Disease Association
National Capital Lyme & Tick-Borne Disease Association
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ National Capital Lyme & Tick-Borne Disease Association [email protected] www.natcaplyme.org Phone & fax: 703-821-8833
Posted by bettyg (Member # 6147) on :
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
Posted by cs (Member # 15270) on :
This is important folks, we can't let this opportunity pass us by! -karen
Posted by jjeennnniiee (Member # 7964) on :
Hi CS,
Thank you very much for posting that additional information!
I received it also and intended to add it to my thread here.
I just hadn't had the time to do it yet, like you did though.
I greatly appreciate you taking the time and effort to do that!
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
My name is Beth Dumesco, and I am a volunteer with National Capital Lyme and Associated Diseases, commonly known as NatCapLyme.
We are working very hard to bring our message to the U.S. Congress, educate congressional Representatives and Senators, and encourage them to move on Lyme legislation.
We are working towards an event on September 24, and getting copies of Under Our Skin and Cure Unknown to all 535 Senators and Representatives.
We are working with Turn the Corner Foundation, and are reaching out to all Lyme groups that we know about.
As you will see in the email below, there are two ways you and your members can really help:
Call your representatives and donate.
Whatever you can do will be deeply appreciated and benefit Lyme sufferers and their families.
Send this email to anyone you think would be interested.
If you have any questions, feel free to call me at 301-353-1498, or send me a return email.
(Between August 30 and September 6, contact me at 308-382-3055.)
Subject: Lyme Briefing for Congress on September 24
Lyme Briefing for Congress on September 24
We Need Your Help!!
What we are doing
Our community has an historic opportunity to brief Congress on Lyme disease.
With the help of Senators Dodd and Lieberman, the National Capital Lyme and Tick-Borne Disease Association has a luncheon briefing scheduled in the Senate Russell Office Building on September 24.
All members of Congress are invited.
Speakers will feature Andy Wilson, director of Under Our Skin, and Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic.
� Telephone, email, write a letter, or best of all, schedule to meet with them in person in their home district office while they are home on recess in August.
� Ask them to attend the briefing.
If they cannot attend, request they send their senior staff.
Congressmen are the most responsive to requests from their own constituents.
Your voice is vital to success!
Attached is a point paper to aid you in your discussion.
* DONATE:
� Sponsors are needed to provide the book Cure Unknown and the full length DVD of Under Our Skin to all 535 members of Congress.
� You can even include a personal note to your own congressman!
Or, you can send your donation and note to NatCapLyme by mail to our PO Box.
� Within days you will be able to make your contribution and send your message on-line.
We need donations by Aug. 30.
It will cost $17,000 to provide copies to all members of Congress.
NO DONATION IS TOO SMALL!
Why it's important
It has been over fifteen years since the US Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form.
Every two years a new congress is formed.
Lyme disease bills have been introduced repeatedly, but none has resulted in action.
We wish to raise awareness and request a new congressional hearing so that our legislators can facilitate unbiased research.
To quote Pam Weintraub in Cure Unknown, "...if we are ever to unravel the mysteries of Lyme disease and find a cure, it is science--pure and unadulterated--that will lead us home."
The release of the documentary film Under and Skin the book Cure Unknown present the Lyme community with an unprecedented opportunity to educate our federal elected officials about the disease and the incredible toll it takes in human suffering.
Let's all work together toward this important goal that will benefit everyone affected by Lyme and Tick-Borne disease.
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.
Love, Light, & Health, Jennie
[ 28. August 2008, 10:58 PM: Message edited by: jjeennnniiee ]
Posted by bettyg (Member # 6147) on :
i was just figuring with the discounts on book/dvd it would be $31.00 PER SENATOR AND HOUSE REP.
$17,000 divided by 535 members total - $31.00 ***********************************************
what a bargain!
Posted by cs (Member # 15270) on :
Exactly! How many members do we have here? If everyone could sponsor just one of their congresspeople, this effort would be a resounding success.
Posted by bettyg (Member # 6147) on :
cs,
how could we find out for EACH OF OUR STATES, WHO OF OUR HOUSE REPS. OR SENATORS have had enough for both book/dvd ???
i know i've seen a couple replies here of folks saying they were sending; 1 being an iowan and she named the house rep she sent $$ for !!
Posted by lymeout (Member # 8045) on :
Bless you, Bettyg, for your encouragement! You can find your reps and senators by going to www.natcaplyme.org and clicking on the button that takes you to the donation page.
There you will find a flag and the name of the state it represents. Click on your state and your legislators will appear!
But please remember, everyone, that even if you choose not to donate, we want you to send a message! You do not need to donate to do that! Our goal is to make your legislator acutely aware of how you, and others in his constituency, are suffering!
Also, if you think visiting your legislators will not have an impact, please go to Congressman Frank Wolf's homepage and read the heartfelt letter he wrote to Representative Pallone. And please notice WHY he wrote that letter!
That one little visit inspired an activism that is ongoing! There is ongoing communication now between him and his lyme constituents!
If others do this, we will gain momentum; and we will be IMPOSSIBLE to ignore!
Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
Yesterday, I sent you a message about the event NatCapLyme is organizing for members of Congress on September 24.
(If you didn't receive it, let me know and I will resend.)
This is an update on our progress.
Please forward this to your members and anyone else who would be interested.
Contact your congressional representatives and ask them to attend on the 24th.
And, if you can, make a donation at the NatCapLyme website.
If you would like to call me, my home phone is 301-353-1498.
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
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.
Love, Light, & Health, Jennie
Posted by bettyg (Member # 6147) on :
lymeout, thanks for your additional info.
found it ok, BUT there is nothing there indicating if any of ours have been paid in full .... that is what i was mainly trying to find out! thanks.
Posted by cs (Member # 15270) on :
It is not too late to donate folks!!
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
Posted by bettyg (Member # 6147) on :
i just listened to the last 1 hr. broadcast where they gave more info.
main thing they emphasized EVEN IF YOU CAN NOT DONATE ANY $$ AT THIS TIME,
email them a note for your senators and house reps; a short 1 page MAX telling what you are ging thru and encouraging them to get our lyme bills on their agenda.
edited: i just sent my IOWA SENATORS AND HOUSE REP TOM LATHAM an email to natcap HQ to be included in their books/dvd !! easy to do!
meet with them if possible during the next months! betty
Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
CONGRESSIONAL HEARING UPDATE
Our NatCapLyme volunteers went to the Hill last week and walked the halls of Congress!
* We hand-delivered invitations for our September 24th Congressional Luncheon Briefing on Lyme Disease to all Hill offices.
* Staffers were excited about the event.
They were particularly impressed that their constituents were committed enough to sponsor Andy Wilson's documentary Under Our Skin and Pamela Weintraub's book Cure Unknown: Inside the Lyme Epidemic in order to educate them on the Disease.
* If you haven't sponsored a book or DVD for your Congressman already it's not too late.
Make sure you order them here, and include any message you would like us to include to personalize them.
No donation is too small!
Lyme Briefing for Congress on September 24: We Need Your Help!!
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.
Love, Light, & Health, Jennie
Posted by Parisa (Member # 10526) on :
Thank you for doing this. We have donated. We can't afford to but then again we can't afford not to.
I hope there are postings about this over in medical as I wasn't aware of this until today and I visit the site frequently.
Posted by jjeennnniiee (Member # 7964) on :
Hi Parisa,
Thanks for donating!
I'm sure it's greatly appreciated by many!
I don't believe this exact thread is over there, but I do believe someone else posted something over there about it.
Feel free to correct me, if I'm wrong, and I'd be more than happy to put this over there, as long as no one objects.
Love, Light, & Health, Jennie
Posted by Parisa (Member # 10526) on :
I know there are some purists who don't like to see anything but medical posted on medical but sometimes something really important like this should go over there. Too many people don't come over here so your limiting your viewership. Post it over there even if it upsets a few people. The worse that can happen is it eventually gets moved.
Posted by bettyg (Member # 6147) on :
jennie, i think it's on EVERY forum now.
you could do a search copying the subject title and have it search PER forum; takes like 1-2 minutes tops to do them all. fyi only Posted by jjeennnniiee (Member # 7964) on :
Thanks for the information, Betty!
Glad to know the word has been spread!
Love, Light, & Health, Jennie
Posted by bettyg (Member # 6147) on :
yes, it's in medical; came across it last night! Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
An Update to all our friends and supporters of the Congressional Lyme Briefing:
The National Capital Lyme & Tick-Borne Disease Association is pleased to provide you with this update on the Congressional briefing.
Thanks to YOUR hard work and dedication, and to the wonderful efforts of On The Marc Media, the public relations firm for Open Eye Pictures, producer of Under Our Skin, news of the National Capitol Lyme and Tick-Borne Diseases Association's Congressional Briefing on being covered by news organizations all over the country.
Here are just a few:
Andy Abrahams Wilson, producer for Under Our Skin was interviewed for a story about the film being played for members of Congress on Capitol Hill.
The story will air tonight on the NBC station in San Francisco.
The story is about how this movie is telling such a powerful story about Lyme patients that now lawmakers are getting involved.
There is a national network doing a story Wednesday and more TV stations and a major newspapers, including:
Fox News Network
NBC San Francisco
NBC Washington D.C.
Fox News Orlando
CBS Orlando
PBS San Francisco
CBS Seattle
WTOP Radio Washington D.C.
ABC Sacramento
And there is big news for them!
We set out not only to educate our nation's policy and lawmakers with an historic briefing on Lyme disease and its science, but also to impress upon them the wide reach of these diseases and the tremendous toll it takes in human suffering and lost productivity.
Congress needs to know that tick-borne diseases strike Americans from all walks of life and all backgrounds, across our country, and in their own states and districts.
It is NOT just a Northeast US disease.
To demonstrate this, Lyme victims from across the country are sending copies of the DVD Under Our Skin and the book Cure Unknown, Inside the Lyme Epidemic to their own elected members of Congress and the Congressional health committees.
Members of support groups from across the country have urged their Senators and Congressmen to attend the briefing or send their staff members and take note of this epidemic.
The response has been enormous.
It looks like we'll have a full room.
DVD's and book donations, all with personal letters from Lyme disease victims to their members of congress, are being made to hundreds of Senators and Representatives.
In many states the entire Congressional delegations are already covered 100 per cent.
We're approaching 100% coverage of the entire Congress, but we still need help to make it there.
The historic Avalon theater in Northwest Washington DC has been booked for a screening of the complete film, with reservations approaching the theater capacity.
This represents a tremendous effort on behalf of our volunteer staff in DC, and from Lyme patients from all across the USA.
This shows that by working together, Lyme victims can be seen and heard effectively.
Thank you. We will report again after the briefing.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
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.
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
CONGRESSIONAL BRIEFING A GREAT SUCCESS.... STANDING ROOM ONLY!
Washington, D.C., September 25, 2008.
The Capitol Hill Lyme disease briefing yesterday was an enormous success by all accounts.
More than 100 people attended the briefing, of which at least 80 represented offices of senators and representatives.
Many put aside their lunch to take notes.
Stephanie Spar, speaking for founding sponsor Turn the Corner, began the briefing with an excellent message of urgency.
During the special 25-minute montage of Under Our Skin, which director Andy Abrahams Wilson specially prepared for this briefing, the audience was stone silent, transfixed on the message.
The audience broke into spontaneous applause at its conclusion.
Pam Weintraub, author of Cure Unknown, delivered a compelling presentation about her six year quest to unravel the mysteries of Lyme disease research and treatment, urging the audience to avoid becoming trapped in the extremes of either side but to seek the truth from the vast majority of the medical community still seeking to discover effective treatment for late-stage Lyme and tick-borne disease.
Two local doctors, Dr. Sam Shor and Dr. Robert Mozayeni, gave effective medical science presentations on the research they are doing coming out of their practices.
NatCapLyme board members delivered books, DVDs, and constituent letters to congressmen's offices following the briefing.
The entire Lyme community across the country was heard in this unprecedented effort to bring their message to Congress.
The goal of the briefing was to provide education and increase awareness in Congress of the growing epidemic and suggest the need to establish a new Congressional record.
The message yesterday conveyed the need for complete research encompassing the full spectrum of the medical community to be considered and its intent to continue congressional oversight until the disease is conquered.
Tonight, a screening of the full film, Under Our Skin, was attended by a crowd estimated at around 300 at the Avalon theater in Northwest Washington, DC.
ABC News Washington DC did a story on their 5 p.m. newscast that can be seen at
More than 400 people have reserved tickets to attend the ``sold out'' free screening of Under Our Skin at the Avalon Theater in NW Washington, DC tonight.
More stories and pictures will be coming.
--END--
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
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.
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
I just received this about NatCapLyme and wanted to pass it along:
The National Capital Lyme Disease Association, with Founding Sponsor Turn the Corner Foundation, was pleased to host the Congressional Luncheon Briefing on Lyme Disease on Wednesday, September 24, 2008.
We want to offer our heartfelt gratitude to all of you for your support, in whatever form - emotional, financial or active participation through letters, congressional visits and phone calls - over these weeks leading to the luncheon briefing on Capitol Hill.
Thanks also, to Turn the Corner Foundation for making this possible with its generous support.
The goal of the briefing was to provide education and increased awareness in Congress of the growing Lyme epidemic and to suggest the need to establish a new Congressional record.
Congressional hearings would provide a firm and informed basis for decisive federal action on behalf of all tick-borne disease patients.
Wednesday's program conveyed the need for comprehensive research reflecting the entire spectrum of the medical community and for careful government oversight of the research process until these infections are conquered.
By all accounts and measures, it was a success!
We had over 100 in attendance.
We had it filmed and hope to have the program on our website by the end of next week.
It was also covered by our local ABC television station.
Keep in mind that our goal was to convince Congress of the depth of human suffering and loss of productivity caused by Lyme disease.
We wanted Congress to know that the controversy surrounding diagnosis, treatment and the existence of chronic Lyme has created a gridlock that requires their attention and action with an in-depth Congressional hearing and continued oversight.
Andy's film was beautifully edited to present the most important points.
Viewers were left with a clear picture of the opposing camps' thoughts and behaviors.
Most poignantly, however, it conveyed the suffering of patients left wounded on the battlefield.
The audience was extremely attentive!
Pam Weintraub delivered that missing middle piece - the independent, uncontaminated science - and with passion and eloquence, challenged Congress to investigate fully, but not to allow it's investigation to degrade into a "he said/she said" between the opposite extremes that would go nowhere.
She encouraged Congress to give hearing to the vast uncommitted central ground of scientists who are studying tick-borne diseases, where real strides are being made to unravel the mystery of these pathogens.
Pam and Andy both have given us so much more than a book and a film -- they continue to sacrifice their time, and invest their careers, to advocate for us.
Our gratitude for that is immense!
Dr. Samuel Shor, who is highly regarded among his colleagues as well as the community (Washingtonian's Top Doctor List), spoke about his transition of discovery from IDSA treatment to that of ILADS.
He gave examples of misdiagnosed case studies where he came to understand that many patients diagnosed with other diseases were, in reality, suffering from Lyme.
He shared his experience with the effectiveness of the ILADS treatment approach.
Dr. Robert Mozayeni, who has both Yale and NIH on his resume, briefly discussed co-infections and the dilemma of trying to diagnose Lyme in the typical short examination time allotted to each patient.
He emphasized the need to listen and remain open-minded to the nuanced and ever-changing world of science.
We were told not to be surprised that Hill people would come, eat and run.
In fact, very few left, even though it lasted longer than the allotted hour and a half.
Many took notes.
But what we want you to understand today is the critical role YOU played in this project!
Those phone calls you make to your legislator - you think they don't matter?
Take note: When we were delivering information to the offices, one of our volunteers walked into the office of a South Carolina legislator and upon announcing who she was and why she was there, she was greeted with "Oh, I was just on the phone with one of our constituents, and she was telling me about her struggles with Lyme.
Count me in.
I'll be at your briefing!"
During our visits to the congressional offices, we encountered many staffers who were personally affected by Lyme.
We believe that these experiences are going to lead some to read the book and view the DVD, then hopefully they will be shared with others.
Pam's book is now on their book shelves and will be more likely used as a resource when questions arise.
The clincher on this is the LETTERS you wrote.
They were transcribed on stationery and all were placed in envelopes addressed to your legislators.
Some were delivered Wednesday and the remaining will be delivered next week.
Every single Senator and Congressman is receiving a book and a DVD due to your generosity.
We know that many of you made a real sacrifice to do this.
Without your participation we would not have reached our goal.
To show the power of the DVD and the book, we'd like you to know about the commitment of Congressman Frank Wolf of Virginia.
He was so moved by Pam's book, donated by one of his own Virginia constituents, that he came to the NatCapLyme briefing.
At the briefing, he was so moved by Andy's film, that he then made a statement on the floor of the House of Representatives about the crisis of Lyme disease.
He sought a commitment for full hearings from Congressman Frank Pallone, the chair of the House Health subcommittee early in the next Congress.
This is but one example of the kind of impact educating your Senators and Representatives can have.
Although the exchange goes with Congressman Chris Smith supporting his bill, the important point is that momentum is building for full Congressional hearings and oversight.
So, YOU HAVE A JOB TO DO in the next six weeks when all Senators and Congressmen will again be home in their districts and states.
Visit them in their district offices and at town hall meetings, anywhere they are speaking and ask: Did you attend the NatCapLyme Lyme disease briefing?
If you didn't, did you send an aide?
What did you learn?
Will you support full Congressional hearings on tick-borne diseases in the next Congress?
Let them know it's important!
The graphics version of this message, previously sent, will be on our website soon.
This message is sent because some have said they could not open the graphics message, or would like to forward this message to text only listserves.
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National Capital Lyme & Tick-Borne Disease Association
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.
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Love, Light, & Health, Jennie
Posted by bettyg (Member # 6147) on :
i was so proud of rep wolf in his confrontation with pallone on our stalled lyme bill!
he was really geared up for this and had info galore plus having watched the under our skin clip!!
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what a bargain!