Lyme Activists Combine Boots on the Ground with Sophisticated Media Campaign to Protest IDSA Guidelines

Bruce Fries, The Mayday Project

The Mayday Project advocates for Lyme patients who are misdiagnosed and denied treatment and insurance coverage due to restrictions imposed by the Infectious Diseases Society of America (IDSA) guidelines for diagnosis and treatment of Lyme disease.

In little over a year, the Mayday Project has gone from a relatively unknown, loosely organized group of activists to a 501(c)3 nonprofit with a reputation for aggressive, effective “in your face” advocacy.

This transition was accomplished by combining a series of boots on the ground protests with aggressive media campaigns that leveraged traditional media, social media, and search engine optimization to disseminate information to a wide audience.

Mayday’s publicity campaigns generated favorable coverage from a wide range of media outlets, including Fox News, Medscape Medical News, Poughkeepsie Journal, and Truth-Out.

Mayday’s own material has been published in medical industry publications that reach hundreds of thousands of physicians, including Outbreak News Today, Pain Medicine News, and Infectious Disease: Special Edition, which reaches more than 6,000 infectious disease specialists in the U.S.

Creative use of search engine optimized, using a SEO marketing agency – press releases allowed the Mayday Project’s material to dominate internet news feeds for weeks at a time. On May 4, 2015, all of the top ten search results for “IDSA Lyme guidelines” on Google News were Mayday’s material or coverage of Mayday’s work.

The Mayday Project’s first protest took place at Lafayette Park in Washington DC and became an annual event informally known as “Mayday.” The early events were well attended, but IDSA did not respond, so in 2014 Mayday was moved to IDSA’s headquarters in Arlington, VA.

Approximately 150 people attended the two-day protest, coming from as far away a Maine and California. Mayday founders Allison Caruana and Josh Cutler met with representatives from IDSA and said that the IDSA people were in near tears after hearing the stories of suffering.

A highlight of the event was when IDSA apparently mistook a Fox News reporter for a protester and had him ejected from the building. This did not go over well and created a media circus on the sidewalk for 90 minutes while the reporter tried to get through to IDSA and talk sense into them. The reason it was so hard for the reporter to get through was that Mayday supporters from all over the country were calling IDSA and clogged the phone system. That evening the local Fox News evening news provided nice coverage of the protest and declared victory for the protesters. IDSA’s only response was “they were listening,” although they didn’t have much of a choice with dozens of chronically ill patients camped out on their doorstep for two days.

IDSA took no action to address Mayday’s concerns, so a follow-up protest and candlelight vigil was planned for IDSA’s IDWeek medical conference in Philadelphia in October 2014.

The night before the protest, a candlelight vigil was held outside IDSA’s designated headquarters hotel. With the Lyme Quilt in the background, names of deceased chronic Lyme patients were recited in a solemn candlelit ceremony. By coincidence, IDSA’s annual business meeting was taking place while the vigil was in progress. The hotel security attempted to have protesters removed from the property, but were unsuccessful. Mayday had all the proper permits as was not breaking any laws.

For each protest, Mayday hires a jumbo size billboard truck. The billboard truck for IDWeek read: IDSA: Stop Rejecting Science: Lyme Disease Patients are Suffering: Blood is on Your Hands! with bloody handprints for emphasis. The driver was able to park the truck directly in front a main entrance to the convention center.

The billboard and protest drew a large audience of IDWeek attendees, who gathered along a second-floor railing to gawk and take pictures.

In addition to the vigil and protest outside, Allison Caruana and Josh Cutler attended the conference and reached out to the attending scientists and physicians to get their perspective on the controversies surrounding Lyme disease. The encounters were cordial, and most doctors acknowledged the reality of persistent infection.

Allison and Josh handed out business cards with a scan code and links to scientific research on chronic Lyme and an open letter that called on IDSA members “to intervene on behalf patients” and “help rectify the guidelines in the interest of patient care.”

Even though they did nothing wrong, by the end of the conference, four security guards were brought in to follow Allison and Josh everywhere, even into the bathrooms.

Several weeks after the protest Mayday contacted IDSA to express concern about the heavy-handed security presence and request a meeting with IDSA president Stephen B. Calderwood.

After three months of persistent effort, on March, 20 2015 the Mayday Project became the first group in the 30-year plus history of Lyme advocacy to meet with IDSA’s leadership.

The meeting with Dr. Calderwood lasted 90 minutes. Dr. Calderwood expressed a desire to get it right in updating the guidelines, but he was not receptive to Mayday’s concerns about how the current panel was “stacked” with academic physicians, who have staked their reputations on the premise that chronic Lyme does not exist.

Without a more substantive commitment, Mayday began planning another 2-day protest at IDSA headquarters on April 30 – May 1, 2015.

That event included a candlelight vigil and a 60 foot long lighted LED sign that said “IDSA HARMS LYME PATIENTS.” Supporters who could not make it shipped more than 100 pairs of shoes to IDSA to represent chronic Lyme patients who were too sick to attend.

At the rallies during the day, jumbo green helium balloons were outfitted with tethers and lofted up to the third floor were IDSA’s offices are located. The balloons were decorated with bloody handprints and included crime scene tape streamers with shoes tied to the ends.

On the first day of the protest, IDSA attempted to have the protesters evicted from the property. They were not successful, and at approximately 1:00 pm the lights on the third floor went off and stayed off.

To ramp up the pressure prior to the protest, Mayday ran more than 500 television ads, on CNN, Fox News, Discovery Channel and the Weather Channel. The 30-second ad linked the IDSA guidelines to suffering and death and called on viewers to join the fight and make a difference.

Mayday is currently organizing a collaborative protest and candlelight vigil at the 2015 IDWeek conference in San Diego on October 9 and 10. Co-organizers include LymeDisease.org and the San Diego Lyme Disease Support Group. The Lyme Quilt, which represents patients who have battled chronic Lyme, will be displayed for the first time on the west coast.

For more information visit www.facebook.com/events/1457255221263418

About the Mayday Project

The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.

For more information, visit www.themaydayproject.org