The Lyme Times

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2 The Lyme Times
Informed Advocates are Strong
Advocates
In the third issue of our 25th anniversary series, we are looking at the scope of
the science of Lyme disease, from Willy Burgdorfer’s discovery of the spirochete
in 1982 to ILADS’ new evidence-based guidelines.
The big news is the publication of the new guidelines —
the first Lyme guidelines to follow the GRADE format, a
systematic and transparent analysis of the evidence used
by several organizations including Cochrane Collab-
orative and the World Health Organization (see page 17).
They are also the first to comply with the eight standards
identified by the prestigious Institute of Medicine as being
critical to the development of trustworthy guidelines. The
authors built patient-centered care into the guidelines
from the ground up and our own executive director,
Lorraine Johnson, was part of the working group. We
thank Dan Cameron, Betty Maloney, and Lorraine for volunteering thousands of
hours over two intense years, hammering out details and making the guidelines
the best they could be. It was a labor of love. We are grateful to ILADS for allowing
us to reprint the Executive Summary in this issue. The complete Guidelines are
available free online. [informahealthcare.com/doi/abs/10.1586/14787210.2014.9
40900]
Informed advocates are strong advocates, and in these pages Betty Maloney,
Dan Cameron, Eva Sapi, Robert Lane and Brian Fallon try to give you a sense of
the progress we have made while Ray Stricker, Alan MacDonald and Tom Grier
highlight areas still crying for attention. Lorraine Johnson ties it all together with
her astute analysis and strong patient advocacy. She explains what patient-centered
care is and why patients need to be involved in evidence-based guidelines. Every
advocate should understand these cutting-edge concepts informing the front lines
of medicine.
Today we are facing a new challenge — the FDA is threatening to clamp down
on non-FDA-approved tests across the board and to shut down some of the most
accurate Lyme labs. Currently, 90% of the FDA-approved Lyme tests are ELISA
tests, judged by researchers to be too insensitive for use as screening tests. Lyme-
Disease.org is fighting back. We will use the data from our survey when we meet
with FDA officials to protest the crackdown. The survey drew over 3,500 responses
in the first 48 hours. Please participate! (See back cover)
Other groups also oppose the FDA’s proposal, including the American Medical
Association, which argues that patients would lose “access to timely life-saving di-
agnostic services and hinder advancements in the practice of medicine.”
We thank all those who generously contributed their time and energy to write
the articles for this special issue. These remarkable people are willing to share with
us their unique combination of advocacy, scientific investigation and the practice
of medicine. They are our heroes.
We hope this issue helps you better understand the “big picture” — what we
know, what we don’t know, where we have been and where we need to go from
here. Join our team, use our resources, find out what you can do to contribute.
There is strength in numbers, and we need all the help we can get.
2014 VOL. 26, NO. 3
Published quarterly for members by LymeDisease.org
Library of Congress No. 92-595999
ISSN No. 1552-7506
TLT Production
Editor in Chief: Phyllis Mervine, EdM
Managing Editor: Pam Cocks, MPH, MLS
Contributing Editor:
R. Timothy Haley, MA
Mental Health Editor:
Sandy Berenbaum, LCSW, BCD
Online Editor: Dorothy Kupcha Leland
Graphic Design: Michele D. Lott
Production Design:Jay Gamel
LymeDisease.org
Executive Director:Lorraine Johnson, JD, MBA
President: Phyllis Mervine, EdM
VP Education & Outreach: Dorothy Kupcha Leland
Sr. VP and Secretary: Barbara Barsocchini, MBA
Treasurer: Mitch Hoggard
Membership and Publications: JoAnne Vidal
Please visit rite
us at P.O. Box 1352 Chico, CA 95927.
Phone 530.570.1811. Email
disease.org. Please contact us for written
permission to duplicate or reprint any
portion of The Lyme Times.
DISCLAIMER
Articles in The Lyme Times are not
intended as legal or medical advice
regarding the treatment of any symptoms
or disease. Advice of your healthcare
provider should be obtained before
pursuing any course of treatment. The
Lyme Times makes no express or implied
warranties as to the efficacy or safety of any
treatment and disclaims all liability for use
of any such treatment. Opinions expressed
in articles are those of the authors alone
and not necessarily those of The Lyme
Times or LymeDisease.org.
LymeDisease.org is a
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© Copyright 2014 LymeDisease.org