LYMEPOLICYWONK: Dr. Paul Duray Resigns from IDSA Panel Due to Family Illness–Implications unknown

Patients with Lyme disease know how important the definition of an illness can be. We know that the difference between chronic Lyme and Post Lyme Disease Syndrome is the difference between receiving treatment and being medically abandoned. So what’s with all the “new” language at the IDSA hearing about medically unexplained symptoms? MUS for short. No fewer than 3 IDSA speakers use this expression: Drs. Weinstein, Shapiro, and Wormser. It was like they synchronized talking points. First, let me tell you what MUS and PLDS have in common—no antibiotic treatment. Because—guess why? Because the term MUS applies to diseases of unknown etiology— diseases with no identified cause. But wait, you say. Doesn’t Lyme disease have a cause? You might assume that given that the bacteria has been identified, Lyme disease has a cause and isn’t really “unexplained”?

The treatment guidelines of the Infectious Diseases Society of America dismiss persistent symptoms of patients with chronic Lyme disease (CLD) as no more than the “aches and pains of daily living”. After all, they reason many people complain of fatigue, arthritis, pain, emotional and cognitive dysfunction. The IDSA’s point is that symptoms of Lyme disease occur no more frequently than they do in the general population and that, at any rate, they are not serious—just minor aches and pains. But is this true? LDo’s recently published survey results say no.

LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 patient groups across the nation. LymeDisease.org also launched a patient survey on March 28 to solicit patient views. It drew more than 5,500 responses. We included findings from the survey in the formal comments we filed with the IDSA.

When is an open hearing not an open hearing? How do you give the appearance of being open without, well, actually being open? How do you deal with the issue of public accountability in Lyme disease guidelines when you would rather not? I'd say the IDSA open hearing, which excludes the public from participating, but allows them to "view" the proceeds from a safe distance probably fits the bill. And that, my friends, is what the IDSA intends to do. Hold a public hearing that fits the "form" but not the "substance" of a public hearing. In this way–the IDSA does not have to face the patients whose lives it is destroying. This is a one sided communication device–something the patients are quite used to, but something the IDSA should set aside in favor of accountable transparency. If you are going to talk the talk , you ought to walk the walk. Let's call this hearing what it is– one more way to "silence the sick".

On Monday, February 1, 2010, the Connecticut Attorney General sent a letter to the IDSA expressing “concern” over “improper voting procedures” used by the IDSA in the Lyme guidelines review voting process. The IDSA may soon approve hearing determinations based on this improper voting procedure. The Attorney General requested that the IDSA redo the vote to comply with the Settlement Agreement. The four-page Attorney General letter was released in response to a Freedom of Information Request made on behalf of patient groups for information regarding the IDSA’s compliance with the Settlement Agreement.