Weintraub to IDSA: Listen to the steady heart beat of true science, leave the past behind, and move toward the future

On May 1, 2008, the Connecticut Attorney General announced a landmark settlement against the Infectious Diseases Society of America in connection with its guidelines for treating Lyme disease. The IDSA guidelines are relied upon by insurers throughout the nation to deny seriously ill patients treatment for chronic Lyme disease. The Attorney General found substantial conflicts of interest among the panel members on the IDSA guidelines who held commercial interests related to diagnostic tests, vaccines, and insurance. In addition, the Attorney General found that the panel suppressed scientific evidence and excluded opposing views from the panel.

Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t.

Today, the Institute of Medicine released a new report “Clinical Practice Guidelines We Can Trust”. I haven’t read the entire report (217 pages), but this emphasis on the word trust is important. Lyme patients have a number of complaints with the treatment guidelines developed by the Infectious Diseases Society of America. Mainly, we don’t trust them. Over 80% of the roughly 4,000 respondents to CALDA’s 2009 survey said that they would not choose to be treated under IDSA guidelines. That’s a boatload of dissatisfaction and distrust. Chief among the complaints about the IDSA guideline development process was that the panel was not balanced and excluded those who would be most affected by the guidelines—patients with chronic Lyme and the physicians who treat them. The IOM new report seeks to change this by recommending involvement in the guidelines process by “clinicians and populations expected to be affected by [the guidelines]” and by recommending that a patient or patient advocate be represented in the guideline development. That’s welcome news.

The IOM has slotted Afton Hassett to speak about “Potential Bio-Marker Applications for Lyme Disease: Aligning Multiple Symptoms with Biological Measures”. You might think he was a microbiologist or, or, or ? Well, it turns out that she is a Psy.D. What is a Psy.D.? It is a newish graduate degree in psychology. It does not focus on research or statistics, it focuses on the “soft” side of psychology, generally therapy (which is not a bad thing, but why should it weigh in on biology?) What does a therapist have to say about biomarkers specifically and why was she chosen over say, someone who actually knows about biomarkers, like Dr. Ben Luft? I shudder to think that this is about the psycholigization of an illness—namely turning an illness caused by a bacteria into a psychiatric illness, as in “don’t worry, it’s all in your head”. Afton Hassett, Psy.D., hails from the Chronic Pain & Fatigue Research Center, Department of Anesthesiology at the University of Michigan Medical School. Her view in a nutshell? Is that patients are nuts. How refreshing. She publishes with Dr. Lenny Sigal, a highly vocal anti-chronic Lyme light seeker. How reassuring. Some of her quotes follow after the jump. . .

A recent publication authored by Feder and correspondence to that publication defined the 'Axis of Evil' in this controversy as physicians who treat patients with needlessly prolonged courses of antibiotics, 'specialty laboratories' that perform 'inaccurate' Lyme testing and the internet, which promotes 'Lyme hysteria'. Dr. Stricker and I published a counter article taking on each of the three elements of the "Axis of Evil", one by one (Future Microbiology, Volume 3, Number 6, December 2008 , pp. 621-624(4)). While this version of the article is available on Pub Med, the full version (which contains footnotes) is available for purchase by the publisher Future Science .