The Lyme Times Volume 25, Number 2

2 / 40

2 The Lyme Times
We are excited about MyLymeData — our new patient-powered research tool that
lets real patients give meaningful input into the search for a Lyme disease cure. Please
learn more about it in this issue because we want you to join in.
MyLymeData builds on the foundation of ’s
online surveys, which have collected information directly
from patients and published the results in important medical
journals. Participation has almost tripled since our first one in
2011 — reaching over 8,000 people this year. MyLymeData will
be an even bigger and more powerful project, and its success
depends on you.
One of the big problems with mainstream research is that it
looks at small numbers of patients in a narrow spectrum of disease symptoms. Lyme
specialists complain that the people enrolled in research trials don’t look like the
average patients they see in a clinical practice. Traditional research also focuses on
curiosities of researchers rather than the concerns of patients living with the disease.
And sometimes patients find out that their records have been used for a project that
actually hurts them!
MyLymeData addresses these problems directly. It allows thousands of patients
to pool their medical experiences so we can see how treatments are working, how
people have been misdiagnosed, or how many co-infections afflict the average patient.
Importantly, each participant will decide who may access their data.
will explain each proposed research project and offer recommendations.
By pooling data, patients and researchers approved by them can learn about the
real-life impact of the disease. By asking the right questions, we can give patients a
chance to weigh in on issues that matter to them. And will continue
to relay your voices to healthcare policy experts, journalists, and legislators who could
actually help patients.
Many are becoming involved in the “big data” movement. John’s Hopkins researchers
have studied more than 52,000 insurance records of Lyme patients (see story page
24). As a result a very different picture is emerging from the one long held by the
Infectious Diseases Society of America (IDSA) and the Centers for Disease Control
and Prevention (CDC). Lyme now affects the lives of millions of Americans, and
surveys show how it is hurting families and whole communities. It’s way past time to
change this.
This issue of TLT has other exciting articles, too. More and more people are speaking
out and organizing educational events. This spring I attended two conferences on the
East Coast. Both played to packed audiences. In March, the Mid-Massachusetts Lyme
Disease Foundation hosted its first conference. Hundreds braved icy roads to hear
ILADS doctors speak and to participate in a dozen workshops. In May, Connecticut’s
Lyme Connection organized its ninth annual free patient conference and health fair,
where advocates honored Lyme Disease Association President Pat Smith for her years
of community service. They also had a full house.
And we have a new film! Andy Abrahams Wilson has come out with a sequel to
Under Our Skin: Emergence, in which he devotes a big chunk to CEO
Lorraine Johnson explaining the important issues in Lyme science and politics. “Take
a Bite Out of Lyme,” also known as the Lyme Disease Challenge, brainchild of Melissa
Bell and her Florida colleagues, has proved a big success, bringing many celebrities
into the “lymelight” while raising funds for the ILADS Research Foundation.
Read and inform yourself. Then go to to add your Lyme data to
MyLymeData. Learn more about real people with Lyme disease and help find a cure!
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 in
its articles or letters and disclaims all liability for
use of any such treatment. Opinions expressed
in articles are those of the authors alone and
are not necessarily those of The Lyme Times or
.
Printed by Healdsburg Printing, Healdsburg, CA.
is a 501(c)(3) organization.
© 2015
The lyme Times
Editor in Chief: Phyllis Mervine, EdM
Managing Editor: Pamela Cocks, MPH, MLS
Online Editor: Dorothy Kupcha Leland
Mental Health Editor: Sandy Berenbaum, LCSW, BCD
Production Editor: Sandy Bohle
Layout Editor: Jay Gamel
Graphic Designer: Michele D. Lott
Sponsorship Manager: JoAnne Vidal
Please contact
for permission to duplicate or reprint any
portion of The Lyme Times.
President: Phyllis Mervine, EdM
Sr. VP & Secretary: Barbara Barsocchini, MBA
VP Education & Outreach: Dorothy Kupcha Leland
Treasurer: Mitch Hoggard
Chief Executive Officer: Lorraine Johnson, JD, MBA
Membership Correspondence: JoAnne Vidal
Please contact
for membership information:
P.O. Box 1352 Chico, CA 95927
Phone: 530.570.1811
THE LYME TIMES Big Data is a Big Deal
2015 Vol. 27, No. 2
Published for members by
Library of Congress No. 92-595999
ISSN No. 1552-7506