"Most scientists and researchers vehemently deny the existence of chronic Lyme disease, citing numerous studies that demonstrate no biological evidence for its existence. Patient advocacy groups dispute the scientific evidence and often enjoy outsized influence over policymakers."
My reply:
Dr. King, I appreciate your comments. I would agree that climate change and the proliferation of deer contribute to the rise in tick-borne disease, and these problems should be addressed.
I disagree, however, that patient advocacy has led to poor science and poor public health policy. Historically, Lyme advocates who have insisted on disease persistence have often been ignored by scholarly reviews, guidelines, and editorials, despite evidence that advocates may be correct that Borrelia persist after treatment in other forms outside the bloodstream (see Hodzic et al, 2008; Norman et al, 2008; and Miklossy et al, 2008 for 3 recent examples).
The IDSA guidelines and insurance companies have also largely ignored the major double-blind, placebo controlled studies that suggest that long-term antibiotics contribute to severe fatigue management (Krupp et al, 2003) and pain relief (Fallon et al, 2007), and that chronic Lyme disease is not "the aches and pains of daily living" (IDSA guidelines, 2006) but rather a debilitating condition of the magnitude of congestive heart failure (Klempner et al, 2001).
In the wake of the CT Attorney general's investigation into possible conflicts of interest and anti-trust violations, many ground-breaking articles have come to print. Is it the result of advocacy, new technologies, or the natural progress of research? Perhaps all three. But clearly, new research is validating what patients have reported all along, and advocates all over the country are welcoming thorough science, wherever it leads.
(See also an excellent reply from Yale Associate Professor Preston Wiles, MD on the importance of patient advocacy groups.)
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