Pick a little, talk a little–How to make a speech for IDSA Lyme review panel

Another run away Prius hit the news today. I have one (first year). I share these concerns. Is this car safe? Should I really be driving it? Have they recalled my model? It made me think about the IDSA Lyme guidelines a bit. Why haven’t they recalled these guidelines? They actually harm patients. The real risk to patients is not that they will have the risk of a reaction to their antibiotics, it is that they will be treated under these guidelines. That they will remain ill. That the diagnosis will be missed. That the treatment when it comes will be too little, too late. That the medical society responsible for the high, high treatment failure rates will do nothing more than circle the wagons around their self interests. That patients matter less than vaccine and diagnostic test patents and preserving the reputation of a medical society that does not even have patients on the agenda.

A recent study evaluated over 4,200 IDSA guideline recommendations and concluded that more than half—really?—more than HALF? were based on no more than expert opinion and anecdote, not evidence. As it turns out, only 1 of 7 treatment recommendations were based on high quality research trials. According to a recent article in Reuters, in the absence of a strong evidence base “the recommendations end up depending largely on who's on the guideline-drafting panel and any assumptions or opinions they may bring to the process.” The IDSA likes to paint patients who oppose its Lyme guidelines as “anti-science” misfits, but the truth is that patients just want some honesty and transparency. We’d like a little more evidence and a lot less opinion. We’d like more treatment options when the evidence is poor. Evidence based medicine is supposed to be about wringing the bias out of the process, but expert opinion is all about bias. One doctor who served on many IDSA panels acknowledged that “we are operating on a lot of bias. We recognize we have bias, but it’s impossible to eliminate when there is a dearth of data.” Well, this is clearly wrong. It is easy to acknowledge the lack of evidence and provide treatment options. Just like the prostrate guidelines do. More after the jump. .. .