posted
Easy to do and important for us all!
Posts: 13171 | From San Francisco | Registered: May 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I am always skeptical as well when it comes to these things. Wasn't there just a recent poll conducted by and published by Lorraine Johnson??
Posts: 1885 | From here | Registered: Jul 2012
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posted
This is a survey being conducted by LymeDisease.org, a national patient representation organization who has conducted such surveys in the past when they want to testify on behalf of Lyme patients.
I don't know what the survey will be used for, but I'm betting it's going to be used for media publicity to demonstrate Lyme patient profiles in general and why we feel we need better guidelines than the nonguidelines the IDSA will rubberstamp again without any LLMD or Lyme patient representation in their guidelines process.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Hi: LymeDisease.org takes the pulse of the Lyme community on a variety of topics. Recently, we did a survey and used the results in our negotiations with the FDA (which is seeking to limit the availability of lab testing.)
This survey is in response to the IDSA Lyme revision process. The IDSA is *supposed* to take patient opinions into account when they make these decisions. But instead, the IDSA has chosen a "patient representative" who has no experience with Lyme disease. We are gathering patient's opinions and will include them in our official "public comments" to the IDSA. We will also use them to inform journalists, politicians, and the public about the views of Lyme patients regarding this important topic.
There are a number of blogs which explain more background. If you start with this one, it will lead you to the others.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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