posted
Congress asked for a state of the science evaluation of Lyme disease. What the Institute of Medicine is offering, however, is a biased presentation of views promulgated by the Infectious Diseases Society of America. Because the IOM refuses to allow speakers of comparable scientific weight to counter the IDSA viewpoint, three major Lyme patient groups have withdrawn their participation. Here's how to register your protest with Congress.
SIGN FORM IN SUPPORT OF LYME GROUPS
Please let Congress know you support the Lyme groups move to withdraw from the NIH/IOM State-of-the-Science Lyme Disease and Other Tick Borne Diseases Workshop by reading the statement located HERE http://bit.ly/dwsJv4 and completing the response form.
LDA will send your reply directly to Congressman Christopher H. Smith (NJ). It will not be used for any other purpose than this project. Thank you!
PRESS RELEASE
NIH Does Not Comply with Congressional Appropriations Language Lyme Patient Groups Compelled to Withdraw from Scientific Meeting
September 20, 2010 - In a move designed to protest the Institute of Medicine's upcoming Lyme disease workshop, three of the nation's largest and most influential Lyme groups have pulled out of the process. After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.
The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases. Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives.
The IOM's mission was to provide "independent, objective and non-partisan" advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias. Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA's controversial guidelines for Lyme. IDSA's Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.
In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate-- Dr. Gary Wormser of Westchester Medical Center -- who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.
The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. "We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process. From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop," the groups said in a joint statement.
ABOUT PATIENT LYME GROUPS
Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssociation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Today's mail had a letter from my representative to congress inviting my participation in the IOM conference. I fired off an e-mail requesting he withdraw his support of this sham event.
Pinelady I'll try and think of some questions to send in. Brain not at it's best right now so any suggestions welcome.
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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onbam
Unregistered
posted
So could this potentially abort the workshop?
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
granniela I best leave that to the experts right now. I am sure they have some up their sleevies.
But I would like to ask for a record of the minutes and availability to the public.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Today's mail had a letter from my representative to congress inviting my participation in the IOM conference. I fired off an e-mail requesting he withdraw his support of this sham event."
Good for you!!!!
Some representatives are under the impression the NIH is the cat's meow. They need to hear from us that this isn't the case.
THANK YOU GRANNIELA!!!
And thanks to those who have filled out the form! Every voice counts toward exposing the corruption!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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