Lyme disease: Reader not aMUSed with MUS category –Call for acronyms

The Connecticut Attorney General is reviewing the IDSA report to determine whether the IDSA has complied with the terms of the antitrust Settlement Agreement. Attorney General Richard Blumenthal's initial review of IDSA voting procedures on the guideline recommendations found the IDSA violated the agreement by rigging the vote to favor no change in the guidelines. We have been informed that both Washington State Attorney General and the Attorney General in Pennsylvania have sent letters to the IDSA requesting that they comply with the Settlement Agreement voting procedures. In addition, US Legislator Chris Smith and US Senator Chris Dodd also wrote the IDSA expressing "deep concern" regarding the IDSA voting procedures. Faced with this scrutiny, the IDSA recast its vote on all recommendations to comply with the agreement–with a major exception. They refused to redo the vote on the one recommendation that required that diagnosis of Lyme could only be made if there is a positive blood test. This vote is critical because even under the initial flawed voting procedure the vote split 4 to 4 which means there was no consensus on the requirement that diagnosis be confirmed by positive lab tests. The Attorney General is currently reviewing the IDSA report to determine whether the IDSA has complied with the Settlement Agreement. The press release of the CT AG is set forth below. I encourage those concerned to contact the CT AG Office and let them know that you want the vote redone on the major issue of lab test confirmation for diagnosis. Details follow.

I have been getting calls lately from patients who go to the website of the American Lyme Disease Foundation (ALDF), mistakenly believing it is a patient website. It’s not, and it’s easy to get confused. You have LymeDisease.org (LDo), the “Lyme Disease Foundation” (LDF), and the “American Lyme Disease Foundation” (ALDF). All three sound like patient advocacy organizations, but the ALDF is not.

How is it possible for the IDSA to have a public guidelines review on Lyme Disease hearing date set for April 27th when it hasn’t notified speakers that they will be speaking at the hearing? When it hasn’t even selected speakers? When it hasn’t even posted applications for speakers on its website? When it hasn’t reserved a room for the event? You’d think this group had never held a conference before—but wait— it holds annual conferences! So this organization KNOWS how to prepare for and hold a big event that will have a number of speakers; it knows how to reserve a room; and even how to select speakers and give them time to prepare. In fact, it has already worked out all of these details for its own annual meeting in October, which is more than 6 months away. They have a list of speakers, the assigned topics and reserved facilities— the whole nine yards.

If you don't read medical journals or medical ethics journals, you may have missed a comment made by Dr. Ann Gershon in the Southern Medical Journal. She is responding to an article by Susan Ronn that was published together with an editorial by me and Dr. Stricker. It took me a couple of times reading this, but I think she made a promise based on a dare. She says: "If and when there is credible evidence of the existence of chronic Lyme disease and of the benefits of long-term antibiotic therapy to treat it, IDSA WILL NOT HESITATE TO CHANGE ITS GUIDELINES TO REFLECT THIS EVIDENCE."