LymeBlog

Report on the IOM Meeting Regarding Lyme Disease

“Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.”

(Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)

Report on the IOM Meeting Regarding Lyme Disease

LymeBlog News
Lexington, KY USA
From: National Capital Lyme & Tick-Borne Disease Association
www.natcaplyme.org
natcaplyme@natcaplyme.org
Phone & fax: 703-821-8833

Washington, DC – Thursday, April 21, 2011. The Institute of Medicine (IOM) released their report on April 20, 2011, on “The Critical Needs and Gaps in Understanding Prevention, Amelioration and Resolution of Lyme and Other Tick-Borne Diseases.” The report confirmed what Lyme patients have known for years – that Lyme disease is a serious illness, and significant gaps remain in our understanding of the disease.

At the request of the National Institute of Allergy and Infectious Diseases (NIAID), the IOM was entrusted to plan and hold a two-day workshop to assess the state of the science of Lyme and other tick-borne diseases. A committee was formed, which provided a forum for broad scientific and public input, and produced a summary report on the critical needs and gaps in research.

Although we share the concern with many in the Lyme community that treatment was not included in this workshop, we are pleased that other critical themes were addressed. The National Capital Lyme Disease Association (NatCapLyme) would like to thank the IOM for completing this arduous task with integrity within the guidelines they were charged to respect.

Pamela Weintraub’s powerful presentation at the IOM workshop last October made a notable impression on the IOM Committee. In its preface, the IOM Committee wrote: “Pamela Weintraub spoke eloquently about her personal experience and her family’s challenges with Lyme Disease.” Echoing Pamela Weintraub’s call for research, the IOM report states that “a new environment of trust and a better environment for more constructive dialogue [is required] to help focus research needs and achieve better outcomes.”

We commend the IOM for so effectively establishing the convergence of science with real-life situations and highlighting both the need for more scientific knowledge and the serious societal challenges that need to be addressed.

Importantly, the IOM Committee noted that “the burden of disease is a growing concern.” The Committee recognized that “tick-borne diseases (TBDs) represent some of the world’s most rapidly expanding arthropod-borne infectious diseases, yet significant gaps remain in our understanding and knowledge about them.” Some of the themes discussed in the IOM report suggesting greater emphasis and more research are:

· A national integrated research plan for advancing the science on tick-borne diseases;

· A long-term study of Lyme disease and other TBD patients; Educational programs for the public;

· The current status of diagnostic tests and biomarkers for tick-borne diseases;

· Biorepositories for tick-borne diseases; Biological understanding of persistent symptoms;

· The impact of coinfection in severity of human TBDs;

· The role of immune response to tick-borne infection and its effect on bacterial load and disease manifestations;

· Animal models that explore mechanisms of pathogen persistence following antibiotic treatment.

A diverse group of scientists and physicians with expertise in tick-borne infections discussed a breadth of scientific topics. Some profound insights shared by several of these presenters include:

· “Science is not belief, but the will to find out” (Benjamin J. Luft, M.D.)

· “Everyone is studying the early stage of this infection, no one is studying the persistent phase of this infection.” (Stephen Barthold, D.V.M., Ph.D.)

· “You do not require an antibody response to develop this disease” (Janis J.Weis, Ph.D.)

· “Treat the patient, not the test” (Juan Olano, M.D.)

· “[For the child] long-term effects last 50-70 years” (Richard F. Jacobs, M.D.)

· “…the poor understanding of the true incidence and geographical distribution…I don’t think we have a clue” (Richard F. Jacobs, M.D.)

· “How can you say, ‘I’ve treated you for four weeks and therefore you no longer have Lyme disease.’ The fact is, we don’t know!” (Sam T. Donta, M.D.)

· “Under-powered studies which purport to demonstrate universal efficacy need to be viewed with circumspection” (Sam T. Donta, M.D.)

· “All that shouting drowns out all the complexity and the nuance and the work that needs to be done” (Pamela Weintraub, senior editor at Discover magazine, and author of Cure Unknown: Inside the Lyme Epidemic)

In addition to thanking all the presenters, we want to express our gratitude to the Lyme community for supporting our effort to see this workshop through. The thousands of Lyme patients who responded to our surveys and allowed their stories to be shared in “The Human Dimension of Lyme and Other Tick-Borne Diseases: The Patient’s Perspective,” the NatCapLyme paper commissioned by the IOM, provided a valuable contribution to the IOM workshop and report.http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx (p. A-67)

We strongly urge each of you to continue the process that IOM initiated by reading the IOM report so that you can extract from these works what is beneficial to your specific case in your quest to achieve wellness and to overcome the negative effects of Lyme disease. http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx

The IOM workshop brings us another step closer to improving the lives of Lyme patients and their families who have been profoundly impacted by tick-borne infections, and who have been caught in the crossfire of opposing views for such a long time. The next logical step is collaboration between all stake holders to fill in the gaps uncovered in this workshop concerning diagnosis, addressing the topic of treatment, and the need for a consistency of language in discussing Lyme disease. “Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.” (Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)

We implore Congress to fund and the IOM to convene a second workshop that would address research needs for effective treatment for persistent Lyme disease.

National Capital Lyme & Tick-Borne Disease Association

P.O. Box 8211 · McLean VA 22106-8211 · Phone & Fax 703-821-8822
NatCapLyme@natcaplyme.org · http://www.natcaplyme.org

Under Our Skin comes to PBS

Under Our Skin comes to PBS
LymeBlog News
Lexington, KY USA
By LymeBlog News Staff

The award-winning Lyme documentary “Under Our Skin” will air nationally on Public Television stations during Lyme Disease Awareness Month, May 2011. This has the potential of reaching millions of homes across the country. The film will be shown through NETA (the National Educational Telecommunications Association), which is offering the film free-of-charge to the PBS network.Call your local PBS station and encourage that “Under Our Skin” is placed on the calendar for the month of May, 2011. It’s free!Check to see if the film is scheduled to show in your area. If your local PBS station has not scheduled the film, please contact them and ask them to show it. Many of the stations that are broadcasting UNDER OUR SKIN agreed to schedule it after receiving a handful of calls from viewers in the community.

For local PBS station contact information, go to www.pbs.org/stationfinder

Questions contact info@openeyepictures.com

National Museum of Women in the Arts honors Susan Swartz

National Museum of Women in the Arts honors Susan Swartz
ParkRecord.com
By Scott Iwasaki, Of the Record staff

"My husband and I co-produced a couple of documentary films with Impact Partners," she said. "One deals with mercury poisoning ('Mercury Rising') and another with Lyme disease ('Under Our Skin')."

A decade ago, artist Susan Swartz was diagnosed with mercury poisoning from eating fish from contaminated waters. Six years ago, she contracted Lyme disease.

In both instances, Swartz, who splits her time between Martha's Vineyard and Park City, nearly died, but they also gave her a new perspective about her art. "My paintings have become more bold as a result of those experiences," Swartz told The Park Record during an interview. "In this world where commerce and technology seem to influence so many people, I think I want my message to take on the real beauty that is in our natural surroundings. If any of my paintings take people away from those other distractions, even for a few minutes, then they are succeeding in conveying what God gave us naturally.
Swartz's paintings will have the chance to reach new audiences when the National Museum of Women in the Arts in Washington, D.C., honors the artist with a special exhibit, "Susan Swartz: Seasons of the Soul." The exhibit will run June 17 through Oct. 2

(Photo courtesy the Bishopric Agency)

"This is really a big deal for me and I'm so excited," Swartz said. "The museum staff has been talking to me for about a year and half. I got word of a commitment date two days before Christmas last year and what a nice Christmas present for me." Swartz said the NMWA, founded by Wilhelmina Cole Holladay, was the first organization to give equal footing to female artists. "I can't think of any organization that has done more for women artists in our country than NMWA," she said. "Ever since I attended a function years ago, I have dreamed about my work hanging there, so it is an incredible privilege, now, to show my works at this institution."
The exhibit will feature 13 compositions, all of which show her keen eye for the environment, which has developed over the past 40 years.
"I am in what I would call my impressionist/expressionist stage right now," Swartz explained. "I feel like I've gone trough my portraits, my small animals my flower stage and my barn stage and my scuba-diving stage. Now I'm completely into nature.
"In the summer I'm on the East Coast and do a lot of water scenes with water lilies and that sort of stuff," she said. "When I come back to Park City, I paint my trees and landscapes again."
Having recovered from illnesses that were environmental in origin, Swartz became an environmental activist and she believes her art is the perfect vehicle to spread those messages.
"Everyone has a talent that I think they can apply to a greater good," Swartz said. "I think I'm most happy when my work inspires others to make a difference in our environment."
However, she knows that her art is only part of ...

Review: The Poison Plum by Les Roberts

http://lyme-aware.org

by Lydia Niederwerfer, Lydia's Blog, Lyme-Aware.org

Less Roberts, author of "The Poison Plum" I found it intriguing, imaginative and worth reading. It held me spellbound while at the same time left me unsettled and distressed because if you take the time to do more research on the plight of those that suffer with Lyme Disease right now you will find that this book in its underlying facts is so close to true life.

Critics and reviews have stated that Les Roberts’ book, The Poison Plum, is by some too over the top in expressing the views of "fundamentalist Christians" and political enthusiasts who think outside the norm. It goes way beyond inconceivable; others had nothing but praise for the book.

Originally, I had written a review that follows in the same format of others. A freak accident wiped out my entire’s week work which included the review of Les Roberts’ book. Although I feel the original review was adequate, after re-reading the reviews that were already out there, I reconsidered a different perspective from the first.

Each and every one of us has different tastes and interests when it comes to reading books. As we all have difference of opinions on how much government involvement should be allowed in our personal lives. For example, right now, those that oppose the increase of Government and want to uphold the Constitution are considered radicals and trouble makers.

I love to read all types of books and watch all types of movies: suspense, thriller, autobiographies, educational, fluff, feel good, romance, comedy and spiritual. It all depends on what is happening in my own life. Books and movies are used to escape or expand on what is happening in real life. We have the choice on what we would like to read and what we would like to watch. If you don’t want to read a particular book: don’t; if you don’t agree with a particular movie: don’t watch it. End of story.

Connie Strasheim did an excellent job of concisely describing The Poison Plum. “Paradoxically, life's greatest truths are often found in fiction, and nowhere has the truth about Lyme, the fastest-growing infectious disease in the United States, been so accurately revealed as in this powerful, gripping story about a congressman and his quest for justice, a woman's desire for her son's healing from Lyme disease, and the powers that oppose them.”

I, too, like others was captivated and disconcerted with the underlying truth of the basis of the book. Often I found that I had to set it aside to calm down. You see, within this work of fiction, Roberts does a thorough job on intertwining fact within fiction.

In the beginning, the reader is presented with the infamous works of the Government’s Tuskegee Syphilis Experiment in Alabama in the 1940’s where approximately 400 African Americans were used as human guinea pigs. Some may think, that was decades ago. Surely, the Government has come a long way since then; however, there are several concerns and conjectures on where the 2001-2002 West Nile virus became such a problem and why. If you ask those that are struggling with chronic Lyme Disease, there are those that feel the particular strain of Lyme Disease that becomes chronic is a form of a “bio warfare” defense. With all these examples, if you take the necessary time to research, you will find supporting evidence.

No sooner are you shown the horrors of what the Government is capable of, then you are thrust into the present. A tragedy at the hand of a beloved, honored and Congressional Medal Honor recipient at Plum Island, one of the most inconsolable experiences that we have been exposed to over and over only to be left asking: Why?

In the reader’s journey to find out, you are led through a single mother’s quest to find a cure for her son’s illness, that physician upon physician has a different idea as to what could be the problem. She then finds out that the answer may be at her job with the Government at the biological research laboratory. This thrusts her into a world of deception, government corruption, and the political injustices in search of the truth. Only to end with a major twist of turn of events.

This book is not for the faint of heart or those that choose to see the world through rose-colored glasses. It is also not for those that are firm believers that the Government is only looking for the best interest of the people and has no underlying motives of its own.

"... painted with imagination, clarity, intricate description and exceptional pacing--well, not only does it entertain, but it also immerses the reader in its world, captivating the soul from page one until the very end. ~ Connie Strasheim, Author/Medical Researcher of Insights Into Lyme Disease Treatment: Thirteen Lyme-Literate Health Care Practitioners Share Their Healing Strategies

"This book encompasses many aspects of what is really taking place in our world and I think we need to heed the author's warnings. The Poison Plum is very well written and includes all the essential elements of a spellbinding thriller." ~ Marjorie Tietjen, Freelance investigative journalist

"This is one for the record books! This one will change the way you think, open your eyes and leave you speechless. This is one book you will never, ever forget! Les Roberts has knocked it out of the ball park with his creative genius. Get it!" ~ Laura Z.

Will false claims by Lyme disease associations backfire?

LymeBlog News
Lexington, KY USA
By Mac McDonald, Editor, LymeBlog News

An anatomy of misinformation and Internet harassment by Lyme disease associations

Although researching organizations and Action Alerts is not an easy task, we all need to check the facts before firing off phone calls, faxes and emails to politicians

I would hope that everyone reading this article would know by now that when they receive emails containing false information that they have not really won the Nigerian Lottery, that Microsoft will not really send them thousands of dollars if they forward an email to 8 people, and that the little boy who is dying will not really receive money if they forward the email to everyone they know. Most of these misinformation emails are familiar to all of us. These emails are worded in such a way as to motivate the reader to action out of hope of personal gain or a desire to help someone. The old saying is, "When something sounds too good to be true it usually is."

Recently there has been a rash of misinformation email and Internet campaigns with various political agendas spread by persons representing major political parties. Unlike the notices above, these email campaigns contain information meant to enrage the reader and motivate them to take action. These online, political, misinformation campaigns often sound "too bad to be true", but they must be. How else could someone put them on the Internet?

There must be laws which require that information on the Internet be factual, right? Wouldn't someone who spread false information harm their own credibility and, therefore, hurt their own cause?

What follows is this journalist's attempt at dissecting the anatomy of just one such case of a false information campaign: spread using the Internet to one small, special interest group of followers and resulting in well meaning people harassing politicians and spreading a false rumor to everyone they know.

In my opinion, this particular misinformation campaign has damaged the credibility of the perpetrators rather than helping their cause.
In the age of the Internet anyone can claim to be an authority on a subject and quickly spread false rumors to thousands of people
I think I see a formula in most political disinformation campaigns on the Internet:

Step 1 of a disinformation campaign: Claim to be speaking for a large number of people.

Step 2 of a disinformation campaign: Issue a public statement, press release, media interview or letter that contains false, inflammatory, statements or true statements, intended to be inflammatory, which are not relevant to the subject being discussed.

Step 3 of a disinformation campaign: Express indignation and spread emails or Internet announcements, again with false statements or true statements which are not relevant, and ask others to join your fight and spread the word.

Step 4 of a disinformation campaign: Use words and terms in your documents that will incite outrage in your Internet audience with false statements or true statements which are not relevant.

Step 5 of a disinformation campaign: Keep your attacks simple and include very little, or no, actual explanation of your position.

Step 6 of a disinformation campaign: Make it necessary for the object of your attack to make lengthy, complicated responses or explanations which most people will not understand.

Step 7 of a disinformation campaign: If the object of your misinformation campaign: responds, escalate your attack. Keep repeating the false statements or true statements which are not relevant.

We are looking at an "Action Alert" from someone claiming to represent a national organization. If the communication contains inflammatory wording and logical accusations the reader is motivated to spread the word to everyone they know and, in the Internet age, that requires little more than clicking on FORWARD in their email program.

If the false "Action Alert" calls for the reader to contact a politician and includes suggested wording for an email, fax, or telephone call it makes that action that much easier. If the names, phone numbers, fax numbers, and email addresses of the politicians are included it makes it almost an effortless task on the part of the reader to take action.

What if the false information comes from someone who claims to speak for anywhere from 4 to 35 organizations depending on to whom they are making the claim?

SR-133 in New Jersey and Lyme disease:

When New Jersey State Senator Christopher “Kip” Bateman (R-16) decided to sponsor a resolution to urge the Governor to encourage a private business to locate their research center, dedicated to chronic neuroendocrine immune disorders or NEIDs (Senate Resolution no. 133) in the State of New Jersey he must have thought it would be a "slam dunk".

Senator Bateman is a conservative, “Taxpayer Champion” who does not shy away from expressing his opinion on controversial issues. He has 15 years experience in state government.

But this resolution should not be a controversial issue. This should not require a lot of the Senator's time or staff resources. After all, his co-sponsor is from the other side of the aisle, Senator Loretta Weinberg (D-37), so there should not be opposition along party lines. There should not be any opposition from the federal government, both the National Institute of Health and the Centers for Disease Control and Prevention approve of the research center. Patient advocate groups should be supportive, after all, the more research into their ailments the better. Easy job, write the resolution, get it through committee and get a vote to pass it.

Beside, this is not like a bill, this is not trying to pass a law, this is basically asking the Governor to encourage a private industry to locate in the Garden State. It is good for the economy which is good for his constituents.

I can only imagine the Senator's surprise when he received a letter dated October 6, 2009, from a person claiming to be the president of the "national Lyme Disease Association" (note that national is not capitalized in the letter therefore is not part of the official name of the organization). This letter is supposedly representing the views of 35 affiliate organizations. The letter is signed by Patricia V. Smith, President, Lyme Disease Association, Inc.

Step 1 of a disinformation campaign: Claim to be speaking for a large number of people.

Smith includes a list of 33 organizations with the name of the ...

Remembering Leslie Wermers. Two years ago today

LymeBlog News
Lexington, KY USA
By LymeBlog News Staff
Source: Minnesota Lymefighters
Co-founded by Leslie Wermers

"If I die tomorrow and I save one life, I'll die happy."

Leslie Wermers 07/07/1967 - 11/02/2008

Leslie Gave Everything She Had, Cared & Loved So Deeply, Until the Very End. ~God Broke Our Hearts and Angels Rejoiced, the Day Leslie Entered Heaven~ November 2nd, 2008

~You've touched Countless Lives in so Many Beautiful Ways~She Was Always A Loving and Giving Sister; Daughter; Life- Partner; Jayde's Lessie; Ralphie & Dudley's Mommy; Cherished Lyme Patient Advocate; Aunt; Niece; Cousin; & Friend.

Here is an excerpt from the beautiful tribute that Andy Abrahams Wilson wrote in memory of Leslie.

Andy is the Producer/Director of the Powerful Lyme Disease Documentary,"Under Our Skin".

"The Lyme community has lost an important hero and friend–and so did I. Leslie Wermers, 41, died from heart failure in her sleep on November 2nd, 2008."
"It is hard to imagine Leslie’s heart giving out, because for anyone who knew her she was all heart."
"A dear friend to so many and a tireless worker on behalf of the Minnesota and national Lyme communities, Leslie gave everything she had to help others who were sick. And everything she had was an abundant reserve of love and support–even as her own health waned." Andy Abrahams Wilson, Producer/Director, UNDER OUR SKIN Click Here to read the entire tribute and to watch Leslie's interview excerpt from "Under Our Skin". Other stories about Leslie:

North Iowa native, Story City woman advocate for Lyme disease victims

Lyme Disease Patients Loses a Hero and Friend

The Tick And The Time Bomb

Source: Minnesota Lymefighters
Co-founded by Leslie Wermers

Other stories about Leslie:

North Iowa native, Story City woman advocate for Lyme disease victims

Lyme Disease Patients Loses a Hero and Friend

The Tick And The Time Bomb

Chronic Illness Conference, 11/6/10, Plainview, NY

Doctors and Patients Dealing with Chronic Illnesses: Great News About The Chronic Illness Center (CIC)

Chronic Illness Conference

Wave of the Future ~ The Cutting Edge in Medicine
Doctors may contact: Josephine Cavallaro, Chronic Illness Center Consultant, 631-968-2723

November 6, 2010
Time: 1 PM to 9:30 PM
Place: Marriott Residence Inn
9 Gerhard Road
Plainview NY 11803
Phone: 516-433-6200

Registration begins at 12:30 PM – see below

Program 1 PM - 9:30 PM
Opening and Conference Speakers -1:00 PM to 3:30 PM
Coffee Break 3:30 PM to 4:00 PM
Conference Speakers and Closing 4:00 PM to 7:30 PM
Dinner & Social Hour - Marriott’s Solarium Room 7:30 - 9:30 PM
(Note: To reserve a room - mention Empire State Lyme Disease Association)

Presenters

Dr. Lesley Fein
Private practice 1988-pres.
Medical Director, Lyme Disease Society,
presented “Multivariable Analysis of 160 Patients with Lyme Disease,”
wrote foreword to Confronting Lyme Disease, 2007
IPPY Award winner,
featured on
Discovery Health Mystery Diagnosis

Dr Eva Sapi
Associate Professor of Biology and Environmental Science
at the University of New Haven.
Research & investigates presence of different formations of
Borrelia burgdorferi, the Lyme disease bacteria &
has held three national Lyme disease conferences.

Amy Proal
Georgetown University,
Author, “Autoimmune disease & the metagenome,” in press at Springer Publications,
will speak on Autoimmunity Research & Metagenomics,
http://vimeo.com/5106259

Veny Musum
Director of the CIC Center, NJ
“To resolve these issues, my mission is to provide educational information about tick & other vector borne diseases & chronic infectious, systemic diseases.”

Turn The Corner Foundation
Nationwide Advocacy Foundation on Physicians training, educational programs, and
on the facilitation and promotion of important research

The Lanford Foundation–Lifelyme, Inc.
A National Foundation that is one of the driving forces for cutting edge medicine,
on support, advocacy, & educational resources for patients.

Admission (Tax-Deductible Donation) is $40.00
Dinner is Included
Pre-register & Save $5.00 by Reserving Your Tickets
Please send check or money order for $35.00 to:
Empire State Lyme Disease Association PO Box 874, Manorville, NY 11949

Sandi Lanford, Founder/President
www.lifelyme.org

Disclaimer:
The mission of LIFELYME, is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related sutoimmune diseases. Information presented is intended only for educational exchange. This information is not offered by LIFELYME as medical advice for anyone.

NatCapLyme: Don't let IDSA be only voice at workshop!
LymeBlog News
Lexington, KY
By LymeBlog News Staff

September 23, 2010

Dear Lyme Community:

As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are legitimately concerned that the agenda is heavily biased against the patients’ interest. We respect their concerns and their decision to pull out of the workshop. However, upon careful consideration, we have decided to participate in the IOM workshop to represent the Lyme patient’s perspective and show support for our presenters. While we have our own reservations, we are working hard to improve the agenda. Here are some facts and thoughts to consider in making your own decision:

The IOM Lyme workshop is not a forum to debate whose science is right or wrong. It is, rather, an assessment of the state of the science as presented from all points of view, for the purpose of determining the science and research still needed. This workshop is not designed to draw conclusions, but to determine where future research needs to go.

If Lyme patients and Lyme doctors fail to participate, the only perspective presented will be that of the IDSA. If our Lyme doctors and advocates don’t participate, the committee can’t include them in the record and it will appear in the report as if we don’t exist or care.

The IOM committee will accept comments for the record up to 3 or 4 days after the workshop. If you don’t know what was said at the workshop, you cannot draw intelligent comments.

Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report. Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record.

A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot “burn our Congressional bridges” with the very people who are critical to our cause.

When you withdraw from the Washington process, you won’t be asked back again. Each time this happens, we lose our ability to be taken seriously. History shows that progress is made when we work within the system, not when we abandon it. Admittedly, it is by nature, a long and arduous process.

Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA. We can’t let that happen! If the situation warrants it, there will be time to write a minority report. Please attend this workshop and explain your views on the gaps in science and the research you think is needed. For example, the gaps in diagnosis that caused your disease to go unrecognized; the lack of uniformity in approaches of the states; the problem of underreporting; the unreliability of testing and the other issues you believe should be addressed by the science.

Thank you,
Monte L. Skall

Executive Director, the National Capital Lyme & Tick-Borne Disease Association

Linda Lobes

President, Michigan Lyme Disease Association

Lisa Torrey

President, National Tick-Borne Disease Advocates

Judith Weeg

President, Lyme Disease United Coalition

    Affiliates:

    Lyme Disease Association of Iowa

    Minnesota Lymefighter’s Advocacy

    Nebraska LDUC

    Ohio LDUC

    South Dakota LDUC

    Nevada LDUC

    Indiana LDUC

    Kansas Lymefighters, Inc.

    Oklahoma LDUC

    Washington (State) LDUC

    North Dakota LDUC

    In the Lyme Light, MN LDUC

    Wright County Minnesota LDUC

    Georgia LDUC

    Annondale MN LDUC

Tracie Schissel

Chairman, Minnesota Lyme Fighter’s Advocacy

Vice President, Lyme Disease United Coalition

Tina J. Garcia

Founder, Lyme Education Awareness Program

Mac McDonald
Editor, LymeBlog News

Lyme Disease and Other Tick-Borne Diseases: The State of Science 10/11-12
LymeBlog News
Lexington, KY
By LymeBlog News Staff

PLEASE REGISTER AS SOON AS YOU CAN

Link to the IOM webpage:

http://iom.edu/Activities/Disease/TickBorne/2010-OCT-11.aspx

A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes

When:          October 11, 2010 - October 12, 2010 (8:00 AM) Where:         Washington Plaza Hotel (Adams and Franklin Room) • 10 Thomas Circle, NW, Washington, DC 20005     Map

Activity:        Lyme Disease and Other Tick-Borne Diseases: The State of Science

The Institute of Medicine Committee on Lyme Disease and Other Tick-borne Diseases: The State of Science is holding a workshop on October 11-12, 2010 on the critical needs and gaps in understanding the prevention, amelioration, and resolution of Lyme and other tick-borne diseases. Lyme patients and their families need a good turn out a this meeting. The workshop is free. Please plan to be there!

The Lyme Community's reaction will have immense bearing on the contents of the final report. As Woody Allen so succinctly put it ,"80% of life is just showing up". Let's do all we can to put a face on this illness for the IOM and show them that many people care about this issue. Opportunities like this don't come around very often.

This open workshop is scheduled from 8:00 am to 6:00 pm on Monday and Tuesday, October 11th and 12th, at the Washington Plaza Hotel located at 10 Thomas Circle, NW in Washington, DC. Space for this workshop is limited. Please use the link above to register if you will be attending the workshop.

Go to the IOM website:

Look for these links:

A GOOD LYME PATIENT TURN OUT IS CRITICAL

We have been told that workshop attendees will be able to ask questions and interact with presenters

http://iom.edu/Activities/Disease/TickBorne/2010-OCT-11.aspx

National Capital Lyme & Tick-Borne Disease Association
natcaplyme@natcaplyme.org
www.natcaplyme.org
Phone & fax: 703-821-8833



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

National Lyme organization needs your story
LymeBlog News
Lexington, KY USA
By LymeBlog News Staff

For The Institute Of Medicine State of the Science Fall Workshop on Lyme and Tick-borne Diseases - We need your assistance. The IOM has commissioned our organization to write a paper for the workshop committee members entitled: The Human Dimension of Lyme Disease and Other Tick-Borne Diseases: From the Patient's Perspective A team of writers have started the paper and we would like your help to make a complete narrative of living with chronic Lyme disease - its impact on family relationships, job/school, finances, health insurance coverage, disability issues and future plans. Participants' names will be protected; they will not be used in the paper. Your story, your son and/or daughter's story, about the experience of on-going illness, not to mention, accurate details of the scope and conditions involved will be woven throughout the paper. Please know that your efforts to contribute to this paper will help to advance awareness to the realities of living with tick-borne disease. Please send an e-mail with your story to natcaplyme@natcaplyme.org. Please put "IOM Paper" in the subject line. To be considered for the paper, stories must reach us by July 5th, 2010. Your participation will make all the difference. Thank You

National Capital Lyme & Tick-Borne Disease Association
natcaplyme@natcaplyme.org
www.natcaplyme.org
Phone & fax: 703-821-8833

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