LYMEPOLICYWONK: IDSA GUIDELINES LACK EVIDENCE—DON’T CALL IT EVIDENCE BASED IF IT’S JUST YOUR OPINION

The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.

STAND UP AND BE COUNTED

CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.

We are all concerned about the latest report from the IDSA statement that they plan to issue their final report regarding the IDSA guidelines review panel by the end of April. We are particularly concerned about whether the IDSA has corrected its voting violations. There may be other actions for the community to take as this unfolds, but right now, it is critical that we continue keeping the pressure on for other state AG’s to send letters to the IDSA (IMPORTANT: cc the CT AG) expressing concern about the voting violations and asking for compliance. Letters from legislators would also help spotlight the importance of the issue. Information on how to do this is posted on CALDA’s website along with the press release issued by CALDA, TFL and the LDA.

Yesterday, the CDC officially announced that it “recommends that laboratory tests cleared or approved by FDA be used to aid in the routine diagnosis of Lyme disease.” This is a shame. Waiting for FDA approval suppresses innovation in Lyme testing and furthers the interests of those who have vested interests in the current flawed lab tests which miss as many cases as they detect. Neither of these is good for patients.

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. . .