But what chronic Lyme disease activists lack in medical training and peer-reviewed studies, they've made up for in organizational energy and political clout. They have launched their own professional guild, the International Lyme and Associated Diseases Society (ILADS), appointing as its vice president Raphael Stricker, a former director of a penis enlargement clinic who'd been fired by the University of California-San Francisco for falsifying lab data.
ILADS hasn't made much of a dent in the scientific debate. But they've found a foothold in Washington. When New Jersey Rep. Chris Smith (R-N.J.) and Rep. Frank Wolf, the Virginia Republican who represents Loudoun County, held hearings in July on what they called the "hidden epidemic," they invited Stricker to testify. Lyme skepticism has proven to be a bipartisan affair. In 2006, then-Connecticut Attorney General Richard Blumenthal (now a Democratic senator) launched an investigation into the IDSA, alleging the group was deliberately distorting science so as to continue profiting from patents relating to Lyme. (Blumenthal found that the organization had ignored conflicts of interest; the IDSA agreed to revisit its guidelines for the treatment of Lyme disease, but made no noticeable changes to them).
In Virginia, Farris and Wolf, friends since a trip to the Soviet Union together in the '80s, have succeeded in flipping the script entirely. Shortly after Republican Bob McDonnell was sworn in as governor in 2010, Farris' asked his office to investigate Lyme disease. McDonnell commissioned a task force with $50,000 to spend as it pleased, and appointed Farris as its chair.
In August, Romney penned a letter to GOP Reps. Chris Smith and Frank Wolf stating: "We need to ensure that all scientific viewpoints concerning this illness can be heard."
Farris held hearings across the state, from Fairfax to Roanoke, and last June submitted a 19-page report (PDF) with the backing of the state department of public health. Although carefully worded, it breaks with the scientific consensus on several key points—suggesting, for instance, that long-term antibiotics may be a viable treatment for patients suffering from chronic Lyme. It also explicitly instructed the state's Department of Health Professions not to discipline doctors who employ treatment methods other than those suggested by the CDC.
One year later, the Loudoun County Board of Supervisors followed suit with a report of its own. No fewer than three members of the all-Republican board have made Lyme disease part of their campaigns, including Farris' local representative, Janet Clarke, whom he has counseled on the issue. The report lamented that "patients are often misdiagnosed with more familiar conditions" such as ALS and multiple sclerosis, and called for more "'Lyme literate' physicians" to practice in Loudoun. The author flagged a compelling statistic that is often highlighted by chronic Lyme activists: "The CDC estimates that only 10% of Lyme disease cases are actually reported."
But according to Wormser and the IDSA, that's the opposite of what's happening. They say patients, egged on by activists like Farris, are self-diagnosing and then seeking out sympathetic doctors who are more than happy to confirm their suspicions. "I've seen autism being treated as Lyme disease, ALS patients have been treated as Lyme disease, MS patients have been treated as Lyme disease," Wormser says. And it's unclear where the 10 percent figure comes from. "There is no scientific basis for applying a 10x multiplier to the total number of cases currently reported to CDC," says an agency spokeswoman.
Lyme's centrality to the political debate in Loudoun County made it an appealing subject for the Romney campaign. In August, the candidate penned a letter to Wolf and Smith commending them for their work, and stating: "We need to ensure that all scientific viewpoints concerning this illness can be heard." (Smith, in 2008, said that there has been "a significant…cover-up of the fact that chronic Lyme exists.")
When the Romney campaign reached out to him in August to ask for his support, Farris said he wanted to meet with the candidate before he made up his mind. In September, they met for 15 minutes aboard Romney's bus after a rally in Fairfax City. They talked about the United Nations Convention on the Rights of the Child, which Farris opposes on the grounds that it will infringe on the rights of parents to, among other things, spank their kids. (Romney gave him his assurance that he would block any such treaty.) And then Farris broached the subject of Lyme disease.
"I told him that there were real concerns with how the CDC was handling it, and that we needed to get real science behind the disease and not be letting politics overrule science," Farris recalls. "He started asking me about some of the scientific details. It was really interesting to watch his mind work. I was very cognizant that we were running out of time, and I didn't want to try to download a whole governor's report, but he was eating it up."
A few hours after his summit with the candidate was over, Farris got a follow-up email from the Romney campaign. They were planning on sending out a mailer on Lyme disease, and they wanted his advice. "They basically said, 'Can you make sure this looks okay?'" he says. He suggested a few tweaks, and a few weeks later, the mailers went out. Farris appreciated the gesture, but it wasn't enough to win his endorsement. In a lengthy posting on his Facebook page, he explained that he would vote for Romney but not encourage others to do the same.
"He clearly has no idea what a firestorm of political controversy he was dipping his toe into," says one Lyme disease sufferer.
Romney's involvement has only fueled the controversy. Chronic Lyme advocates fear it will cause observers to view the issue through a partisan lens (see: climate change). After I first reported on the Romney mailer in early October, Deb Pagnotta was one of the dozen or so so-called chronic Lyme disease sufferers to reach out to me.
A former New York state assistant attorney general and currently a communications professor at Iona College, she became seriously ill in 2010. When long-term antibiotics did little to alleviate her symptoms, she found a doctor who identified as "Lyme literate" and went on a five-month course of a different antibiotic Rocephin, taken every day by IV. It seemed to work. But her health care provider flooded her with letters—upwards of 130—demanding that Pagnotta reimburse them for the treatment, which it had covered only by accident. Only after she reached out to her congresswoman, senator, and state attorney general did the insurance company back off.
"The frustrating piece for me, and many people who do indeed face serious health issues relating to Lyme, is that precisely because Romney has touched the issue, it will be dismissed as ridiculous," Pagnotta said.
"He clearly has no idea what a firestorm of political controversy he was dipping his toe into."
Wormser and the IDSA wouldn't comment on the Romney mailer, citing a desire to avoid being entangled in electoral politics, but Fish, the Yale professor, had no such reservations. "It's really disturbing for me to see these politicians dismiss science and go against the established scientific community for political gain," he says.
"People believe the Earth is flat and all kinds of crazy beliefs out there," he adds. "I don't pretend to understand why people have those beliefs. I think it's kind of an indictment of the poor quality of science education that we have in this country. But they don't have to believe in science. No one's forcing them to believe in science."
Patrick Henry, the school Farris founded, is one of those institutions that's been accused of rejecting science. Ten years ago, it was denied accreditation and roiled by a minor faculty revolt because it taught creationism instead of evolution. (It is now a member of the Transnational Association of Christian Colleges and Schools.) But Farris sees no irony in his newfound role as a Galileo.
"I believe that the people who believe in evolution don't know science," Farris says. But that's beside the point. He believes the medical evidence for chronic Lyme is so obvious even an evolutionary biologist could see it. "A person who believes in evolution and a person who believes in creation can both take your temperature."