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2015 Volume 27 Number 2
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Advocates in Action
Protests and events draw attention to compromised patient care
By Sandi Bohle
The Mayday Project targets IDSA
The Mayday Project held its third annual
IDSA protest at IDSA headquarters in
Arlington, Virginia, April 29-May1. Lyme
patients and advocates from as far away
as Montana, Tennessee and California
attended the three-day rally, which
included a candlelight vigil to honor those
who have lost their lives battling chronic
Lyme disease. Patients who were too sick
to attend the rally shipped their shoes to
the IDSA.
“Most Lyme patients are not well
enough to travel to Northern Virginia.
We wanted to help them send a message,
too,” said Mayday Project co-founder Josh
Cutler, who has been fighting late stage
neurological Lyme for nine years. “We
are uniting to demand that the IDSA stop
its misrepresentation of science, stop its
conflicts of interest, and fix its guidelines
for Lyme.”
The Mayday Project is a non-profit
organization working to get Lyme disease
recognized as a chronic, disabling illness.
They advocate for research and patient
rights in the hope that patients will one
day have a cure.
Earlier this year, Cutler, along with co-
founder Allison Caruana, met with IDSA
President Stephen Calderwood, MD, and
asked him to consider a Lyme patient for
the patient advocate position on the IDSA
advisory committee instead of the recently
appointed “patient” advocate with no
Lyme experience. Calderwood refused. He
also suggested they direct questions about
the current Guidelines Review Panel’s bias
and lack of balance to their public forum.
IDSA spokesman and Johns Hopkins
physician Paul G. Auwaerter, MD, is one
of the physicians sitting on the panel
tasked with updating the IDSA treatment
guidelines. Cutler and Caruana are calling
for his removal, along with other panelists
who co-authored or reviewed the 2006
guidelines. Cutler cited Auwaerter’s recent
interview with the
Allentown Morning
Call
where he suggested that patients with
chronic Lyme symptoms are dabbling
in conspiracy theories. “When you don’t
understand something, you try to insert
a framework that makes sense to you,”
Auwaerter told the interviewer.
Cutler says the problem doesn’t lie
with patients but rather with denialist
physicians, such as Auwaerter, who refuse
to consider a large body of science-based
evidence supporting the existence of
chronic Lyme.
“When is a Johns Hopkins School of
Medicine researcher no longer competent
to conduct research and treat patients?”
asks Cutler. He then suggested an answer:
“When he ceases to have an open,
scientific mind and starts to sling mud at
the patients he has sworn to care for.”
Next up for The Mayday Project is the
IDSA’s I.D. Week conference October
7-11 in San Diego. For more information,
visit The May Day Project’s website:
themaydayproject.org.Michigan family among those at Maine
conference
On May 2 the Midcoast Lyme Disease
Support and Education group presented
their first annual conference at the
Community Center in Wiscasset, a small
town 45 miles from Portland. According
to an article posted on the
Bangor Daily
News
website, organizers thought the
turnout was phenomenal.
More than 250 people attended the free
event. One family came from Michigan
with their teenage son who has been
suffering from Lyme disease and unable to
find anyone to treat him. They were able
to connect with one of the Lyme-literate
doctors at the conference, and the boy was
going to be seen the following week.
The article goes on to state, “That family
The May Day Project staff, left to right,
Crystal O’Barr, Allison Caruana, Joshua Cutler,
Bruce Fries, Saby Mo, along with Monte Skall,
Executive Director, National Capital Lyme
and Tick-Borne Disease Association (NatCap
Lyme). Photo provided by the May Day
Project.
The Lyme quilt hanging outside the IDSA
building during The May Day Project’s
protest. Photo provided by the May Day
Project.
Lyme patients unable to attend the protest
outside the IDSA sent their shoes in
solidarity. Photo provided by the May Day
Project.