Let’s play doctor. A patient comes to you with joint pain, difficulty concentrating, anxiety, poor attention, and mood swings. You might run a series of tests to rule out a persistent infection or other disorder. If your patient lives in a tick- and Lyme-disease-infested area, you would be wise to test for the bacterium Borrelia burgdorferi and, if detected, prescribe a course of antibiotics. But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. If you are a good doctor, and you are, you might explore a diagnosis of depression, a disease that afflicts almost 10 percent of the population at any given time.
If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics.
And who would be the biggest supporter of your and your patient’s right to pursue a worth-testing-but-found-wanting treatment? Mitt Romney and Paul Ryan.
A Weekly Standard tipper sent in a campaign mailer from northern Virginia titled: “Romney-Ryan: Doing More To Fight the Spread of Lyme Disease.” It’s a little more tightly focused than most campaign mailers, maybe, but I admire them for thinking about the local angle: The D.C. suburbs are filthy with ticks, and Lyme disease and other tick-borne illnesses are a huge public health problem.
But the details are delicious. The mailer promises that Romney and Ryan will:
Ensure that government agencies have an open line of communication and work with patients, researchers, doctors, and businesses in an objective, comprehensive manner.
Encourage increased options for the treatment of Lyme Disease and provide local physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.
Here’s a translation: Forget the science, just channel your legitimate fear of a dangerous disease and your misguided fear of the medical establishment into a vote for us.
As a Slate story pointed out years ago, chronic Lyme disease—not the persistent effects of a long-term bacterial infection but a collection of mysterious symptoms—has powerful supporters. Advocates for the diagnosis tend to blame the medical establishment for not taking them seriously enough. In 2008, the attorney general of Connecticut investigated the Infectious Diseases Society of America, a 50-year-old organization with more than 9,000 physician and scientist members, for misrepresenting the science of Lyme disease. Not to be outdone, Virginia Gov. Bob McDonnell assembled a governor’s task force on Lyme disease. He appointed Michael Farris as its chair. Farris is a lawyer and the chancellor of Patrick Henry College, aka God’s Harvard, whose motto is “For Christ and for Liberty” and whose “Statement of Faith” holds that the “Bible in its entirety” is “inerrant.” The school isn’t known for its biology department.
The task force’s report (PDF) makes some reasonable suggestions. People should be warned about the dangers of ticks. They should shower and do a tick-check after walking in tick habitat. We should shoot more deer. But the task force seems to have bought into the conspiracy theory that the infectious disease establishment is maliciously interfering with proper treatment. It states: “There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.” Again, tell it to the Centers for Disease Control and Prevention.
Another treatment point is telling: “We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.” Pro tip: the plural of anecdote is not data. Just because someone signed up to address a public portion of the task force meeting does not mean their understanding or explanation of their own medical care is accurate or relevant.
I don’t mean to make fun of people who are suffering from what they think is chronic Lyme disease. Their symptoms are real, and they deserve help. But giving them a phantom diagnosis and making them part of a crusade to bring truth to medicine just perpetuates the idea that the symptoms they describe must be part of a complex, classic disease. It’s much more likely to be depression, and depression is treatable. As the CDC gently points out, mentioning other diagnoses that have been favorite catch-alls, “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.”
Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself.
Listen up, Mitt Romney, Paul Ryan, and Bob McDonnell: Medical research and treatment save lives. Please do not perpetuate a mistrust of them in vulnerable, confused people.