Lyme Disease Activists Protest at IDWeek

Caroline Helwick

October 19, 2014

PHILADELPHIA — Ticked off protesters staged a 2-day demonstration during IDWeek to ask physicians to update their guidelines for chronic Lyme disease.

About 100 people from the activist organization sponsored by the Mayday Project rallied outside the Pennsylvania Convention Center, the site of the conference of the Infectious Diseases Society of America (IDSA) and its partner organizations.

The protest was designed to "call on IDSA to update its guidelines for Lyme disease to reflect the current state of science and improved standards for patient care," according to a statement by the Mayday Project.

The volunteer group advocates more accurate testing, improved access to treatment, increased education for physicians, and more funding for research.

Protest organizer Josh Cutler, from Winchester, Virginia, who has battled late-stage neurologic Lyme disease for 9 years, said the infection is an epidemic that is spiraling out of control and is still "vastly underappreciated."

Cutler once held a lucrative position in information technology, but long-term infection with Lyme disease rendered him nearly disabled, he said.

The Mayday Project is asking physicians to revisit IDSA guidelines, which were issued in 2006.

Call for New Guidelines

The case is laid out in an open letter to members of the IDSA, published October 10, 2014. The statement refers to research supporting the existence of persistent disease.

"We protested last May at the IDSA headquarters in Arlington, and we had some success," Cutler said. "We sent an open letter to their board of directors, asking them to overturn their guidelines, which we believe are faulty and leave sick patients unable to get treatment, or even die. We decided we wanted to go to their conference ourselves and see if they were talking about Lyme disease and see the research that was being presented."

Cutler told Medscape Medical News that three members of his organization registered as attendees, paying a total of $2000 in fees. The Mayday Project was also approved for a booth at IDWeek at an expense of $4000; however, the agreement was terminated without an explanation.

A candlelight vigil, for which the group held a street permit, was also interrupted by hotel security. Cutler says the hotel responded to pressure from the IDSA.

The 2-day protest, which was very visible with plenty of signage, was never disorderly, according to Cutler. The advocates primarily greeted physicians on their way to the meeting and tried to engage them in conversation, in which some listened and others did not.

Cutler says the atmosphere changed when they attended the open forum at the meeting. "As soon as we got to the door, we were asked to leave," he said. "One woman told us she was sick of our [expletive]. Words were exchanged, and security was called."

Heated Exchange

From that point on, according to Cutler, the advocates were unwelcomed guests. "We wanted to see posters on Saturday, especially one discussing persistent Lyme disease. We wanted to hear the discussion. IDSA hired extra security for that day, and four guards followed us around. While we were talking to this presenter, two people came and asked for our names so that we could be barred from future meetings," he said.

Cutler said that although they attended most of the sessions of interest, "we were made to feel very uncomfortable."

The IDSA declined to comment on the Mayday Project protesters or their impact on IDWeek or IDSA members.

However, spokesperson Paul Auwaeter, MD, a Lyme disease expert, told Medscape Medical News, "IDSA's priority is to ensure that people with Lyme disease get the best possible care, and that the recommendations in IDSA's guidelines are safe, effective, and based on the most current valid and reliable medical evidence."

If people are suffering, and if you don't believe it is Lyme disease, figure out what it is. Josh Cutler

Dr Auwaeter has been involved in the development of the guidelines, and he pointed out, "they were reviewed in October 2011 and, as with all of the more than 50 guidelines IDSA publishes on infectious diseases, are periodically reviewed to ensure they are up to date, based on the current medical literature."

Going forward, Dr Auwaeter said the society "has ― and will continue ― to support research into Lyme disease, including prevention, diagnosis, treatment, and long-term effects."

He maintained that there can be productive collaboration among advocacy groups, clinicians, and researchers. "IDSA considers all relevant scientific information when developing its guidelines, and has included a wide range of viewpoints ― including advocacy groups and others ― in its guideline review process. Details on collaboration in the future are not yet final," he said.

Cutler said he is hopeful that the Mayday Project can engage in civil dialogue with the IDSA. "We are willing to play nice, if they will listen," he said. "And if they don't, we will continue to protest."

Cutler told Medscape Medical News he wishes clinicians would be slower to dismiss patients' symptoms. "If people are suffering, and if you don't believe it is Lyme disease, figure out what it is. Don't assume that people working in IT, like myself, or the PhD candidate who drops out of grad school are pretending to play sick, as we are often accused of doing," he said. "We know they can't provide a cure, but their current guidelines prevent us from getting the right medical treatment, and they are telling us that it's all in our heads."

Mr Cutler and Dr Auwaeter report no relevant financial relationships.


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