Thursday, October 7, 2010

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.
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.
Read the text of what was entered into the Congressional Record here.
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."

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