It was a throwaway line in an email, as the nation’s head of research funding for Lyme disease neared retirement from the National Institutes of Health.
“I will certainly miss all of you people – the scientists,” Phillip Baker, the Lyme program officer, wrote a colleague in 2007 at the U.S. Centers for Disease Control and Prevention, “but not,” he said, “the Lyme loonies.”
Baker’s appraisal – culled from 3,000 pages of documents obtained under the Freedom of Information Act and provided to the Poughkeepsie Journal — summed up in two words what physicians and scientists who challenge official policies on Lyme disease are up against.
The so-called Lyme wars – one of the most vigorous and, both sides agree, vicious debates in medicine today – is a lopsided struggle to influence national policy on Lyme disease and, more specifically, to prevail on a single question. Can it be chronic?
On one side: grassroots Lyme advocacy groups, doctors who defy treatment guidelines, and patients who say they have chronic Lyme — among them Baker’s “loonies.” The term, he told the Poughkeepsie Journal, “might be too kind a description.”
“The CDC guidelines are part of the problem.”
U.S. Rep. Chris Gibson, R-Kinderhook
On the other: prominent Lyme scientists who authored the treatment guidelines — and reject the term chronic — backed by the might and, moreover, money of the National Institutes of Health and Centers for Disease Control. NIH and CDC officials insist they endorse the guidelines of the Infectious Diseases Society of America based solely on the science of Lyme disease, which afflicts at least 30,000 people; the mid-Hudson Valley has among the nation’s highest rates.
The “guidelines represent the best and most thorough synthesis of the medical literature.”
Charles “Ben” Beard,CDC
But an exclusive Journal review of government emails suggests battles have been won, and minds swayed, through a combination of behind-the-scenes maneuvers and long-standing connections between the scientists’ group and government officials. These ties, some say, have served to keep competing ideas at bay.
Indeed, the emails — from a key period in the evolution of Lyme policy — show government officials fighting legislation that would have reassessed the federal response to Lyme disease — chronic and otherwise — and joining the scientists in efforts to plan strategy against chronic Lyme. Officials also enlisted a key outside scientist in efforts to map research for Lyme testing — essential to settling the chronic question — even as he co-owned a company to market Lyme tests and later won millions in research grants. In one case, an official in the CDC was chosen to share a prestigious byline on a chronic Lyme article by a leader in the science group, who received significant funding from the agency.