Sorry for holiday intrusion. We understand that the holidays are a difficult time to ask you to take action, but we are faced with a situation where we must act now to prevent a dangerous setback for the Lyme community.
TO: Everyone across the country
FROM: Lyme Disease Association, Time for Lyme, and CALDA
DATE: December 31, 2009
WHEN: On January 4, 2010, the NJ Senate Health Committee intends to go forward with resolution SR 133, which puts Lyme disease, a specific disease with known etiology, in with autoimmune disorders of no known etiology, such as chronic fatigue, fibromyalgia, multiple chemical sensitivity & Gulf War Syndrome.
The proposed resolution for an autoimmune treatment and research center is the result of a behind the scenes effort initiated by a handful of people in the chronic fatigue community.
Their plans to lump Lyme disease in with CFS and disorders of unknown origin has the potential of redirecting current and future funding away from finding a cure for those with active spirochetal and other tick borne infections.
Lyme patients and organizations across the country have worked hard over the years to establish, support and promote treatment protocols that will address active tick borne infections.
Lyme disease patients will not benefit from a merger with autoimmune disorders, and in fact, could suffer a tremendous set-back if this were to occur.
>>> WHAT: Call or fax the following NJ Senators today.
Tell them you do NOT want Lyme disease in a center with disorders of unknown origin. Tell them the ONLY solution is to remove the words ``Lyme disease'' from the resolution. Leave your name contact info.
Senate Health Committee
Allen, Diane B.
Fax 609-239-2673
Phone (609) 239-2800
Baroni, Bill
Fax 609-631-0324
Phone (609) 631-9988
Gordon, Robert M.
Fax 201-703-8127
Phone (201) 703-9779
Kean, Jr., Thomas H.
Fax 908-232-3345
Phone (908) 232-3673
Redd, Dana L.
Fax 856-225-9369
Phone (856) 225-9068
Rice, Ronald L.
Fax 973-371-6738
Phone (973) 371-5665
Singer, Robert W.
Fax 732-901-0587
Phone (732) 901-0702
Whelan, Jim
Fax 609-383-1497
Phone (609) 383-1388
Vitale, Joseph F.
Fax 732-855-7558
Phone (732) 855-7441
Weinberg, Loretta
Fax 201-928-0406
Phone (201) 928-0100
BACKGROUND: For those who need background information on the issue:
In a clandestine behind the scenes movement, the chronic fatigue community worked to get the introduction and passage of a resolution in the NJ Assembly in May of this year and although they included Lyme disease as one of the autoimmune disorders having an unknown origin, they did not consult with or inform Lyme patients or the Lyme Community of their plans.
The resolution calls for the establishment of a neuroendocrine immune (NEI-a term coined apparently specifically by these advocates) treatment and research center in New Jersey after their plans to have one in Florida were abandoned.
The chronic fatigue advocates were joined by a few Lyme patients who met in NJ to quietly have this passed. One CFS advocate associated with the UMDNJ promoted his personal agenda for a center with what appeared to be the backing of the University of Medicine & Dentistry (UMDNJ).
After we investigated, we found that not only did he not speak for UMDNJ, the UMDNJ is not supporting this resolution nor the creation of the center.
The NEI advocates also stated the proposed center had the backing of the CDC & NIH. We checked with these government agencies and the Lyme program officers knew nothing about their plans for a NJ center or their plans to establish additional autoimmune centers in other areas of the country with the same mission.
[ 12-31-2009, 11:19 PM: Message edited by: Tincup ]
Posted by massman (Member # 18116) on :
Thanks TC.
So interesting to me how few really try to work together. (SATIRE ALERT ! SATIRE ALERT !)
Sounds like big egos up front !
Posted by Tincup (Member # 5829) on :
Leggo of my big ego! HA!
Here is an update. Please feel free to share with others.
December 31, 2009 - UPDATE on contacting NJ Senators.
The NJ Senate offices will be closed for the holiday. Some of their phone mail boxes are currently full and are not accepting new messages. Please feel free to fax or use the email addresses below to contact the NJ Senators.
Some have web sites with contact forms and additional contact information, others have direct emails.
Your message can be very short and simple. Sample letter:
Dear Senator,
Please do NOT vote to pass SR-133 with the words ``Lyme disease'' included anywhere or anyway in the Resolution.
Thank you.
(Your name and address, and if you represent a group, name it)
Weinberg, Loretta [email protected] Posted by Tincup (Member # 5829) on :
Emails are easy enough... have you taken time to do yours?
Posted by LymeLearned (Member # 20565) on :
I JUST FOUND THIS! Is it too late??? Let me know. MY GOD am I angry! I am livid!
I HATE PEOPLE! Sorry. I had to let that out. These kind of peolple make me wish I could die to stop having to live on the same planet with them.
Then I chide myself to "stop thinking die thoughts. Thoughts bring things."
I HATE LYME. WE are the only ones who know enough and give a rat's ***, and yet we're so sick.
This has me crying and bursting out in another fever flash of sweat. Sometimes I have no warning or reason for them, but stress always fires up a new one. They distress us and make us even sicker, oh and by the way. We have to fight anyway because the rest of the world has no clue.
This is too much.
Posted by LymeLearned (Member # 20565) on :
P.s. I'll still do it if I can and it's not too late. Who else is in to fight? ILADS, CALDA? Anyone?
![[Frown]](frown.gif)
to me how few really try to work together. (SATIRE ALERT ! SATIRE ALERT !)![[Big Grin]](biggrin.gif)