What Pamela Weintraub told IOM panel

Pamela Weintraub's stirring speech at the Institute of Medicine's state-of-the-science Lyme workshop on October 11 brought a standing ovation from the audience, and spirited discussion from panelists. Weintraub is the author of the book Cure Unknown.

Here's an especially compelling paragraph:

It is hard enough to be sick—but to be so sick for so long and also be a suspect—to have your physical pain, your integrity, your very sanity called into question as you travel the medical landscape begging for help, well, let me tell you, that is a crushing course of events. In most other diseases, the sick person can focus on being a patient—on following through with treatment to try to get well. No one suggests the cancer patient is factitious, or the heart patient a sociopath. But in Lyme and tick-borne disease, the brutality of such rejection on top of real physical illness has traumatized the patient community writ large.

Researchers decode Lyme disease genome

Research into the genetic makeup of the microbe that causes Lyme disease offers hope for better diagnosis, treatment and possible prevention of the illness. Scientists have completed genetic blueprinting of 13 different strains of the bacteria. Article from CALDA website Oct. 9, 2010:

Researchers Dr. Steven E. Schutzer of UMDNJ-New Jersey Medical School and Dr. Claire M. Fraser-Liggett of the Institute for Genome Sciences, University of Maryland, and their collaborators have made a major achievement toward better understanding Lyme disease, by determining the complete genetic structures of 13 strains of the bacteria that cause the disease.

These new discoveries may accelerate research efforts to diagnose, prevent and treat the disease, which can affect the nervous system, heart, skin and joints. The occurrence of the disease has grown dramatically over the past ten years in the United States and Europe. The research, which was funded by the National Institutes of Health, has been published online ahead of print in the Journal of Bacteriology.

Dr. Schutzer said, “A driving force for doing this project was the observation that certain forms of the bacteria can be more invasive than others. We wanted to find out why and how to identify this property”.

Patients' views about Lyme in Congressional Record

This posting is from CALDA. The report entered into the congressional record in eight pages, but very important and good reading. I entered the link above and below here.

Patients' views about Lyme research entered into Congressional Record
NJ Congressman Chris Smith says bias stifles Lyme progress

A report exposing the gaps in research regarding Lyme disease, written by three Lyme advocacy groups, has been entered into the Congressional Record. .
Congressman Chris Smith of New Jersey told Congress that "biases and impediments" prevent scientific progress from being made in Lyme disease.
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The report, entitled PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES, was prepared by the California Lyme Disease Association, the national Lyme Disease Association, and Time for Lyme, for the upcoming "state of the science" workshop on Lyme by the Institute of Medicine (IOM). However, the groups pulled out of the IOM process because of its high degree of bias.
Read more about the implications of these developments here.
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Read the text of what was entered into the Congressional Record here.
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:
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Read background about the issues related to the IOM, in past postings of the Lyme Policy Wonk.


IOM modifies workshop agenda after patient groups pull out in protest; skepticism remains
After three patient groups dropped out of the upcoming IOM "state of the science" Lyme session, the IOM announced a change in the agenda. Now, Dr. Ben Luft of Stony Brook will offer a counterpoint to views of Dr. Gary Wormser (chief architect of the controversial IDSA Lyme guidelines). Click here to view the IOM's agenda.This appears to be some movement in the right direction. However, the protesting groups remain skeptical that the IOM process will lead to a true understanding of Lyme patients' needs. In a joint statement, they said, "It's one step--but we are cautious. The IOM needs to commit to making this entire process unbiased so that the true state of the science can be explored."

Dr. Liegner comments to Washington Post

Here are some excerpts from Dr. Liegner's comments to the Washington Post article (see previous post):

In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.

This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.

Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease in humans and animals.

The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.However, such guidelines are indeed useful. They serve to shield from liability physicians who neglect persons with chronic Lyme disease. By misusing CDC case surveillance criteria as the sole basis for a clinical diagnosis of Lyme disease, these guidelines serve the insurance industry very well indeed because such cases represent but the tip of the iceberg of actual cases of Lyme disease, whether acute or chronic.