I also posted this in Activism - but know that it will be seen in medical by more people. Could not get the link to copy, so I copied the email that was sent to me.
October 11, 2009 Vol 2, Issue 9
Action Alert
from
Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania
In This Issue History Take Action Now Goals
HISTORY The State of New Jersey is placing Lyme disease in a group with disorders of unknown causes: chronic fatigue, fibromyalgia, Gulf War Illness, multiple chemical sensitivity. It wants to open a center characterizing these disorders and include Lyme disease as "neuroendocrine immune" (NEID) disorders.
This is a serious danger to Lyme patient treatment as it mirrors what the IDSA and some governement agencies want to do, make chronic Lyme disease a collection of vague symptoms with no known cause, thus preventing treatment with antibiotics.
The New Jersey Assembly already passed a unanimous resolution (AR 202) supporting the creation of this center. The NJ Senate has not yet voted on the Resolution (SR 133).
Click here to see the Senate Resolution that will be voted upon NJ Senate Resolution SR 133
Click here to see the Letter sent last week to NJ Senators asking for removal of Lyme from resolution Letter to NJ Senate by Lyme Groups TAKE ACTION NOW
WHO: NJ residents or businesses; also, any Lyme organizations nationwide who have not already signed above letter. No others please at this time, thanks! WHAT: Call or fax the NJ State Senate sponsors Christopher "Kip" Bateman and Loretta Weinberg.
WHY: To remove Lyme disease from this resolution & from the center
HOW: Call or fax the two senators. Tell each of them Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment. Please remove all references to Lyme disease from the Resolution. Leave your name, address, contact info (if group, leave group name). Also, check if either Bateman or Weinberg is your senator Find your NJ State Senator If so, tell him or her you are a constituent.
GOAL To have Lyme disease removed from a Resoultion SR 133 which includes other disorders all of which have unknown causes.
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Posted by bettyg (Member # 6147) on :
up for NJ ONLY PATIENTS ACTION! ********************************
Posted by DaveNJ (Member # 17362) on :
got it...i will call.
Posted by Curley911 (Member # 2205) on :
I also posted in Activism and will repost here.
I think we need to take a step back, take a deep breath and READ THE RESOLUTION. It clearly states Lyme is "AS DISABLING" as the other diseases.
It does not say it is an auto-immune disease.
I personally would appreciate having help from any clinic willing to learn about Lyme. Dr. J had HIV and Lyme together in his clinic.
I hear your angst NJMom, but please consider that when you were first diagnoses with MS, Lyme was not anywhere NEAR where it is today for recognition and treatment. I am sorry for the pain you have suffered, it sounds like a long, rough road.
I would personally like to go to a clinic that has all under the same umbrella. Some lyme will still go to "Auto Immune" due to bad testing but people will have an awareness that the two are LINKED. say this. It says Lyme is AS DISABLING as autoimmune diseases they go on to name.
Here it is in entirety
I want every state to be successful in creating treatment centers for us, get one started and we have the groudwork for others. Just like CT getting the Lyme Bill passed for treatment on CLINICAL DIAGNOSES paves the road for other states.
Posted by njlymemom (Member # 15088) on :
please read the posts in activism - more info there
Posted by njlymemom (Member # 15088) on :