FW: Tell Congress you oppose IOM Lyme hearing

[Guest guest]

Its pretty sad what has been happening at IOM but not unexpected. Here's a

chance for folks to make their voices heard!

www.lyme-resource.com <http://www.lyme-resource.com/>

You can lead a person to a fact, but you can't make them think! -

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IDSA viewpoint, three major Lyme patient groups have withdrawn their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

http://www.lymediseaseassociation.org/index.php?option=com_content

<http://www.lymediseaseassociation.org/index.php?option=com_content & view=art

icle & id=710 & Itemid=563> & view=article & id=710 & Itemid=563 and completing the

response form.

LDA will send your reply directly to Congressman H. (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(TFL- CT) has withdrawn from the panel.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.

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

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_UYFNM0pbHHuFltL_EC1fnnbhrPbe8bDdceHD6X87z0RaqEZQyM0_7xcuHvUR5bNhxa8Z2l95hj

-63NuniKn_kTvFHTYN34vJgPdbQmM4e2YQ==> , the national Lyme Disease

Association, www.LymeDiseaseAssociation.org

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_UahmH5sX0exhcYvBhbofSZCShU0XboaBdfzN6WeecEgQu-LbjoB5rRY5ncm0ArWnHyAku_hitG

QaECrW6mXkzpr08GOO47FVtsKk8ku9p3UuNkOAto6vQpKEh6P5GtwEG8diqjEAiJBHl99QfCUpKO

VdXJTy2ojmqh_gNJAzyvhUEESaHovFvkmAwDWEfVXvBwjOTmAITVppg_JZ5ieMcIjvg_XSAJT_Q=

> , and California Lyme Disease Association, www.lymedisease.org

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_VFe-qiM1KcUK5SLvhZxnl2L633nEIb7MjUK_LO53RqFOtJEFj5-gH5tf6Wnv6N1h7efiaejI8U

gpa5W9VdOeDzMwrrceHN0vxwa7bw9wLhCw==> , 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.

Read more about this issue on the Lyme Policy Wonk blog:

<http://www.lymedisease.org/news/lymepolicywonk/561.html> Lyme Patient

Groups Withdraw from IOM Lyme Workshop:

http://www.lymedisease.org/news/lymepolicywonk/561.html

IOM Workshop--Who are They, What is It, When, Where, and Why Does

<http://www.lymedisease.org/news/lymepolicywonk/564.html> it Matter?

http://www.lymedisease.org/news/lymepolicywonk/564.html

<http://www.lymedisease.org/news/lymepolicywonk/563.html> IOM

Workshop-Where Do I Draw the Line on Fairness?

http://www.lymedisease.org/news/lymepolicywonk/563.html

<http://www.lymedisease.org/news/lymepolicywonk/554.html> Speaking Truth to

Power: Dr. Liegner Lays it Out for the IOM

http://www.lymedisease.org/news/lymepolicywonk/554.html

This list is intended for patients to support each other and to share

information and personal experiences, not to give medical advice. If you are

interested in any treatment discussed here, please consult your doctor.

For more information visit

http://www.lymedisease.com

<http://geo./serv?s=97476590/grpId=18942604/grpspId=1705106012/msgI

d=1033/stime=1285221482>

[Guest guest]

Its pretty sad what has been happening at IOM but not unexpected. Here's a

chance for folks to make their voices heard!

www.lyme-resource.com <http://www.lyme-resource.com/>

You can lead a person to a fact, but you can't make them think! -

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

http://www.lymediseaseassociation.org/index.php?option=com_content

<http://www.lymediseaseassociation.org/index.php?option=com_content & view=art

icle & id=710 & Itemid=563> & view=article & id=710 & Itemid=563 and completing the

response form.

LDA will send your reply directly to Congressman H. (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.

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

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_UYFNM0pbHHuFltL_EC1fnnbhrPbe8bDdceHD6X87z0RaqEZQyM0_7xcuHvUR5bNhxa8Z2l95hj

-63NuniKn_kTvFHTYN34vJgPdbQmM4e2YQ==> , the national Lyme Disease

Association, www.LymeDiseaseAssociation.org

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_UahmH5sX0exhcYvBhbofSZCShU0XboaBdfzN6WeecEgQu-LbjoB5rRY5ncm0ArWnHyAku_hitG

QaECrW6mXkzpr08GOO47FVtsKk8ku9p3UuNkOAto6vQpKEh6P5GtwEG8diqjEAiJBHl99QfCUpKO

VdXJTy2ojmqh_gNJAzyvhUEESaHovFvkmAwDWEfVXvBwjOTmAITVppg_JZ5ieMcIjvg_XSAJT_Q=

> , and California Lyme Disease Association, www.lymedisease.org

<http://r20.rs6.net/tn.jsp?llr=gothlzcab & et=1103709971555 & s=19 & e=001fze4IvCd

k_VFe-qiM1KcUK5SLvhZxnl2L633nEIb7MjUK_LO53RqFOtJEFj5-gH5tf6Wnv6N1h7efiaejI8U

gpa5W9VdOeDzMwrrceHN0vxwa7bw9wLhCw==> , 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.

Read more about this issue on the Lyme Policy Wonk blog:

<http://www.lymedisease.org/news/lymepolicywonk/561.html> Lyme Patient

Groups Withdraw from IOM Lyme Workshop:

http://www.lymedisease.org/news/lymepolicywonk/561.html

IOM Workshop--Who are They, What is It, When, Where, and Why Does

<http://www.lymedisease.org/news/lymepolicywonk/564.html> it Matter?

http://www.lymedisease.org/news/lymepolicywonk/564.html

<http://www.lymedisease.org/news/lymepolicywonk/563.html> IOM

Workshop-Where Do I Draw the Line on Fairness?

http://www.lymedisease.org/news/lymepolicywonk/563.html

<http://www.lymedisease.org/news/lymepolicywonk/554.html> Speaking Truth to

Power: Dr. Liegner Lays it Out for the IOM

http://www.lymedisease.org/news/lymepolicywonk/554.html

This list is intended for patients to support each other and to share

information and personal experiences, not to give medical advice. If you are

interested in any treatment discussed here, please consult your doctor.

For more information visit

http://www.lymedisease.com

<http://geo./serv?s=97476590/grpId=18942604/grpspId=1705106012/msgI

d=1033/stime=1285221482>