ldoadmin

IDSA guidelines are long on opinion and short on science. This is the stunning conclusion made by an infectious disease specialist at Drexel University, Dong Lee, MD in a poster presentation at the recent IDSA annual conference. Dr. Lee’s analysis is based on a broad review of 30 guidelines published by the IDSA between 1994 and 2009. More than half of the recommendations made by the IDSA in these guidelines were not supported by science.

50% of the 272 speakers at the October 2009 IDSA annual meeting who disclosed conflicts, had ties to one or more of the five leading vaccine companies: Merck, GlaxoSmithKline, Sanofi Pasteur, Wyeth, and Novartis. Vaccine related financial ties with key members of the IDSA Lyme panel prompted the Connecticut Attorney General antitrust investigation into the development of the IDSA Lyme guidelines. Patients remain concerned about these interests because the IDSA guidelines placed commercial interests of vaccine manufacturers above patient care.

I have been reviewing the IDSA transcripts and reread Dr. Arthur Weinstein’s testimony. Yesterday, I discussed Weinstein’s argument that chronic Lyme should be considered a somatic disorder in my post and concluded that his assertion is no more than an unproven hypothesis that should have no role in the treatment of patients. Today I tackle the second major assertion in his testimony—namely that one of the problems with diagnosing patients with chronic Lyme is that it delays early diagnosis and treatment for somatic disorder. The big question, of course, is whether the diagnosis of somatic disorder bears any fruit for patients or whether it is instead a dead end road to nowhere.

I have been reviewing the IDSA transcripts and reread Dr. Arthur Weinstein’s testimony. Weinstein testified in support of the IDSA Lyme guidelines at the IDSA hearing on July 30th. He argued that chronic Lyme disease is a ‘somatic’ disorder involving a “serious amplification of symptoms” and states that he “doesn’t pretend to know the etiology (cause) of the pathophysiology”. He does though assert that the serious amplification of symptoms is associated with patients who have more psychiatric morbidity and is fostered by the labeling the disease “chronic Lyme” by advocacy groups and others that believe in a traditional medical cause for symptoms. This post is part of a twofer. Today, I ask if Weinstein is right that post treatment Lyme disease is a somatic disorder or if this is simply his pet theory. Tomorrow, I ask if the somatic disorder diagnosis provides patients with good patient care.

Having Lyme means losing your innocence, utterly, in science. It's true. I am remembering the night I explained evidence-based medicine to a friend whose daughter had Lyme. I explained that in Lyme evidence-based medicine was a “tool” for persuasion in a polemic argument. He was stunned. His daughter had Lyme. He believed in science. He had trouble, real trouble, getting his daughter diagnosed and treated. He knew the problems of Lyme from the inside out. But it hadn’t occurred to him that science wasn’t “pure” science. That researchers followed their bias, their pet theories, their commercial interests in designing and interpreting studies. It was an interesting moment with this sharp and concerned father while he tried to understand the depth of the problem in Lyme. It was a moment when innocence is utterly lost for the first time to those who know how the system of science “ought” to work.

Fresh back from the Columbia/LDA conference and the ILADS conference in Washington, DC. I love going back for these conferences because I see all the people I have talked to over the year and so rarely lay eyes on. I love the energy of the conference. This year, the ILADS conference had break-out sessions on evidence-based medicine and research. These were working groups with a lot of discussion generated—the type of discussion that only occurs when people are together in the same room and real time conversation occurs sparked by ideas. This was energizing to me.

Why do we do what we do? Sometimes we win, but there are many, many (too many) bumps in the road on the way to success. How do we keep our perspective in the face of an adversary that seems unrelenting—vested, no entrenched, in a medical dogma that leaves patients on the side of the road? A medical society that believes that the views of patients are really–(really?) not relevant to the question at hand? I, for one, want to walk the road of other diseases that have been abandoned and forsaken by the medical establishment. But my road (and those of other illnesses), leads to success. And success–is all about the journey. Touching lives one by one until our day in the sun.