Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EDIT- See update below!
URGENT ** ACTION ALERT ** NEW YEAR'S EVE
TAKE ACTION TODAY! THANKS.
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 **** FAX **** PHONE
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
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 neuroendrocrine 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.
posted
Activism category post being beat out by the post in Medical Questions, which see!
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey over here in no man's land....
Yes, I knew it would have to be a long boring day before anyone would volunteer to come here. HA!
Appreciate your work on this VERY much so!
Unless patients get motivated.. like you did.. we won't get anywhere.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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)
posted
Yes....the ILADS physician Dr. Bransfield, New President of ILADS just posted his support for the NEI Center Project on another forum. He and other ILADS docs understand the good PANDORA AND LIFELYME are trying to accomplish and that their passion is fueled by the needs of so many patients suffering with Lyme and the other illnesses listed under Neuroendocrine Immune disorders. We have a humanity crisis here, and you need to STOP trying to create all the ridiculous division in the Lyme community. Hey, people with Lyme are losing their careers, their spouses and family support, and even have their lives cut short.
Circulating inaccurate and just downright falsehoods define and characterize those who print them not the people they try to direct them at.
Wise up ! AC
It is going to be a GREAT NEW YEAR !
Posts: 1 | From New Jersey | Registered: Dec 2009
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posted
I just stumbled across this a few minutes ago and took time to send an e-mail to all the senators listed. Thanks for making it so easy.
Is there any way to be signed up to be notified of urgent action items? I don't log on to the website very often and could just have easily missed this.
Thanks again, Grannie
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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posted
Hey, thx TC - you are the one who lets us know...and as you know, I am not adverse to checking the activism site out...
AC, what we all disagree with here is that Lyme does not have an unknown etiology and thus should not be grouped in with other conditions being labelled as such.
And for myself, I don't agree with the list being called of unknown origin. My fibromyalgia diagnosis and so many others' fibro has been coming in as actually Lyme disease. I had a known tick bite and development of fibro symptoms within 18 months.
When I finally got diagnosed as having Lyme, I went on clindamycin antibiotics, 150mg every 6 hours.
My fibro symptoms of over two decades, that no treatment had ever been able to affect, went to close to zero in a week's time, and has stayed low as long as I continue to take the clinda, 150mg 2x/day.
Gulf war syndrome has been linked to mycoplasma exposure, amongst other stuff.
CFDs might be linked to this new XMRV discovery.
And what is the center going to do about multiple chemical sensitivity? It's multi-causal - pollution/toxins/Lyme-induced/genetic weaknesses as shown in the detoxigenomic liver test (GenovaDiagnostics lab) and Yasko test.
I/we have a lot of concerns about the motivations for such a center.
[ 01-01-2010, 10:11 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
AC Lymie...
Your first post on LymeNet? Nice of you to join us.
Now, can you please tell us WHERE Dr. Bransfield and ILADS doctors posted their support for the NEI Center and share with us what he actually said?
"Yes....the ILADS physician Dr. Bransfield, New President of ILADS just posted his support for the NEI Center Project on another forum.
He and other ILADS docs understand the good PANDORA AND LIFELYME are trying to accomplish and that their passion is fueled by the needs of so many patients suffering with Lyme and the other illnesses listed under Neuroendocrine Immune disorders.
We have a humanity crisis here, and you need to STOP trying to create all the ridiculous division in the Lyme community. Hey, people with Lyme are losing their careers, their spouses and family support, and even have their lives cut short.
Circulating inaccurate and just downright falsehoods define and characterize those who print them not the people they try to direct them at.
This last minute announcement was not sent out by the Action Alert thingy this time because of the holidays and folks who can set it up are scattered and busy. But usually you would get this type of announcement after signing up there.
And thanks again for your efforts!!!
Yo Ro Bin...
How did you like THAT twist on your name? HA!
Thanks for sharing your concerns and some of the facts for the folks. Good job too!
I am in the process of writing up a detailed response to share with everyone about the NEI Center in general... and what is wrong with the plan they are proposing. Got this bone crusher headache though, so it is taking time to do it.
I thank you for speaking up in the meantime and putting the info out there. You are a good one, ya know?
Hey AC, can you post that link where ILADS support the good pandora and lifelyme are trying to accomplish?
It seems, that you DO have and agenda by spreading these kind of comments on your first post here on lymenet.
Posts: 983 | From The sky | Registered: Feb 2005
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