Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For three decades a tremendous effort has been made to get the IDSA to listen and act appropriately. It's just not in their blood. For example...
In 2009 the Lyme community launched an effort to provide the overwhelming amount of evidence needed to support changes. See quote below...
"The Evidence- Written testimony challenging the IDSA Guidelines was submitted by 150 individuals and organizations to the IDSA Review Panel prior to their April 2009 deadline.
One prominent organization’s Working Group, the International Lyme and Associated Diseases Society (ILADS), under the leadership of Lorraine Johnson, submitted close to two thousand pages of scientific evidence, analysis and research studies refuting the recommendations in the IDSA’s Guidelines.
The all volunteer, non-profit Lyme Disease Association, representing 35 support groups in 23 states and countless individuals across the country, also submitted multiple challenges."
```````````````````````````````````````````````````````````````````````` Included in the evidence listed above were numerous other "challenges" to the IDSA guidelines. I personally assisted doctors, support groups and individuals with this work and submitted several "challenges" for our State's groups.
For that effort I had to watch as some of these patients/advocates literally collapsed from the stress, and/or relapsed, with some still not recovered six years later.
In spite of all the evidence and all of the presentations by medial and scientist experts (approx. 10 of our very best appeared in person), the IDSA guideline authors refused to accept any of the science and made NO changes in their guidelines.
They even refused to implement the 20 (approx.) changes their own hand-picked panel, with their own President sitting on the panel, wrote up for them to make.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The reason I posted the above information is because I care about the patients and those who will get lyme in the future- always my first concern- and there are a few people who want you to hop, skip and jump to another "urgent" call to comply with their recommendations or suffer the consequences.
Their last effort ended with a highly questionable bill being pushed through the NY State legislature that was due to have changes made to it after the Governor signed it into law and no one knew what the changes were. This action was totally irresponsible and in my opinion those kinds of actions puts your health and lives in jeopardy.
If you'd like to make your voice heard there is a simpler and more constructive way to do it.
Complete the survey below so your combined voices will be heard. If it is unsuccessful in making significant changes, the results can still be used for other worthy projects.
I can not reveal everything that was known about the chapter amendment to the NYS bill, by the New York State Coalition before it was introduced except to say that your statement is inaccurate. You weren't privy to the relationships and communications between the New York State coalition and our state legislators, yet you continue to make very public judgements about it.
In the course of extensive conversations with one of the leading Lyme advocacy groups, the New York State Coalition was encouraged to contact legislators regarding the IDSA guidelines review as an effective method of influencing the IDSA. We have shared our letters and documentation with the Lyme community as a way of encouraging others to do the same.
I would like to encourage the Lyme advocacy groups in each state to organize their own constituency to write letters and utilize their own personal contacts with legislators as we are doing in New York. Feel free to use our materials or to write your own. It will probably be most effective to focus your efforts on members of Congress who are known to be supporters of the Lyme community such as the past and current sponsors of the House and Senate bills.
One of the problems in organizing a national campaign is the purposely short time constraints for comment that have imposed by the IDSA.
posted
Good News on Letters to Congress Initiative!
Members of the New York State Coalition have received a very positive response from members of the Bipartisian Congressional Lyme Caucus and they want to help us. Please keep your letters coming. This action is not constrained by the April 9th deadline imposed by the IDSA.
We are still working on Voter Voice and it will be up soon, but if you can send your letters via email, please don’t wait for it.
Note for Residents of New York State: Due to the fact that people have not been able to attach the PDF to their emails via the official contact forms, the email addresses for Senators Schumer and Gillibrand are pasted below:
posted
More good news regarding efforts to ask for Congressional Intervention in the IDSA Review Process!
The Lyme community has united with the LDA and LymeDisease.org to send letters to the US House of Representatives Lyme Disease Caucus, the US House of Representatives Energy & Commerce Committee, and the IDSA itself. Each letter requests specific actions to be taken by each recipient in regards to the IDSA Lyme guidelines development process. The letters asked the House Lyme Caucus to intervene in the IDSA Review process and the House Energy & Commerce Committee to hold a hearing.
This action complements the efforts of the New York State Coalition to send their own letter as well as to encourage constituents to write letters to their own Senators and Representatives to request intervention in the IDSA Lyme Review Process.
I spoke with Representative Chris Gibson’s office yesterday and I was told that in response to both these efforts, members of the House Bipartisian Lyme Caucus have mailed a letter with questions to the IDSA and attached both the LDA/Lymedisease.org/Community letter and the New York State Coalition letter.
The IDSA has promised to send a formal response.
The IDSA has also agreed to extend their Lyme Guidelines Process Comments until April 24th. Anyone who has not replied to the IDSA directly can go to their website and register their comments.
KarlaL
From the LDA website: Lyme Community Unites: Protect Patient Rights
In a move designed to spotlight concerns about the Infectious Diseases Society of America (IDSA) guidelines' development process, groups in the Lyme community nationwide have come together to make their voices heard. The effort to date consists of three different letters which were signed on by multiple groups representing dozens of states across the U.S. and were then sent to the US House of Representatives Lyme Disease Caucus, the US House of Representatives Energy & Commerce Committee, and the IDSA itself, which requested input into its newly structured guidelines development process. . .
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