LYMEPOLICYWONK: Perception is Everything—Is it Black or White: Who decides?

Studies show that patients are profoundly ill. Yet only 4 randomized clinical trials have been done and these had an aggregate of less than 105 patients in the treatment arm of the study.  The studies were small, small, small.  Sample sizes in the thousands or tens of thousands would be necessary to prove no treatment effect.  And the studies conflicted.  Some showed patients treated improved on some measures; while others showed no improvement. Some non-randomized studies show patients improve.  What should we do in the face of this uncertainty? The answer to that question is not a matter of evidence, it is a matter of values. Whose values count? Whose voice matters most? In matters of science, let’s listen to the experts.  But in matters of values, it is the patient’s voice that counts.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.