ACTION ALERT
Senate Sponsor States-
"NEI is fully supported"
by CDC & NIH

from Lyme Disease Association, Time for Lyme,
CALDA, & Lyme Disease Association of Southeastern Pennsylvania

In This Issue:: -- History
-- Take Action Now
-- Contact Information
-- New Umbrella for Lyme Disease?
-- Concerns- State & National
-- More Details About Proposed Center

History
In our last Action Alert, we informed you of a Resolution already passed by the New Jersey Assembly for a "Neuro-Endocrine Immune (NEI) Center."

Click here (pdf file) to see the letter currently asking the New Jersey Senate to remove "Lyme disease" from the Resolution (SR 133) it will soon consider.

Click here (pdf file) to see the NJ Senate Resolution (SR 133) that will be voted upon.

Take Action Now: WHO: National Alert! We need everyone across the USA to contact the Resolution sponsor (Senator Bateman) and the NJ State Senate Health, Human Services, and Senior Citizens Committee members listed below, since more centers are being planned in more states.

WHEN: Start immediately.

WHAT: Talking points and email suggestions to address Resolution SR-133

Ask NJ Senators to remove "Lyme disease" from Resolution SR-133!
- You can tell them that including Lyme disease with disorders of unknown origin will set Lyme research and treatment back.
- You can tell them the IDSA, insurance companies and others will use the classification to prevent you from receiving appropriate treatment.
- You can also tell them non-treatment or treating symptoms only and not the source are some of the reasons you are in this current situation. Provide name, address and contact info (if a group, provide the group's name).

Sponsor and Committee Members- Contact Information

Resolution Sponsor
Senator Christopher Bateman (R) Phone: 908-526-3600 FAX 908-707-4578 Email: SenBateman@njleg.org

Committee Members
Senator Joseph F. Vitale (D) Phone: 732-855-7441 FAX 732-855-7558 Email: SenVitale@njleg.org
Senator Loretta Weinberg (D)* Phone: 201-928-0100 FAX 201-928 0406 Email: SenWeinberg@njleg.org
Senator Diane B. Allen (R) Phone: 609-239-2800 FAX 609-239-2673 Email: SenAllen@njleg.org
Senator Bill Baroni (R) Phone: 609-631-9988 FAX 609-631-0324 Email: SenBaroni@njleg.org
Senator Robert M. Gordon (D) Phone: 201-703-9779 FAX 201-703-8127 Email: SenGordon@njleg.org
Senator Thomas H. Kean Jr. (R) Phone: 908-232-3673 FAX 908-232-3345 Email: SenKean@njleg.org
Senator Dana L. Redd (D) Phone: 856-225-9068 FAX 856-225-9369 Email: SenRedd@njleg.org
Senator Ronald L. Rice (D) Phone: 973-371-5665 FAX 973-371-6738 Email: SenRice@njleg.org
Senator Robert W. Singer (R) Phone: 732-901-0702 FAX 732-901-0587 Email: SenSinger@njleg.org
Senator Jim Whelan (D) Phone: 609-383-1388 FAX 609-383-1497 Email: SenWhelan@njleg.org

* Also resolution co-sponsor

New Umbrella for Lyme Disease?
Patients with Lyme disease should be alarmed by the recent effort to recategorize chronic Lyme disease as autoimmune, or to place it under a term apparently coined by P.A.N.D.O.R.A. for their own purposes, specifically, "Neuro-Endocrine Immune Disorder."

Lyme disease has a KNOWN ORIGIN - Borrelia burgdorferi. It should not be classified with these other conditions which are treated only to manage symptoms. Managing symptoms ONLY, while allowing a complex infection to progress unabated, is not in the best interests of patients with Lyme disease.

Concerns- State and National
The inclusion of Lyme disease in this Center's mission is a national concern for ALL Lyme patients since P.A.N.D.O.R.A. reports, "once the NEI Center is in full operation it is our vision to setup satelite NEI Centers in other states."

We are concerned that in response to your personal contacts with NJ legislators, promoters of the proposed "Neuro-Endocrine Immune (NEI) Center." contacted all NJ legislators, stating in part, "it is unfortunate" and a "misguided" attempt "for an alleged patient advocacy group to oppose [our] efforts."

Please note, no one opposed their efforts, only the inclusion of Lyme disease. We applaud efforts to increase research and improve treatment for those negatively affected by any conditions that have no known cause, however, we know Lyme disease is not in that category.

An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."

NJ Senator Bateman, the Resolution's primary sponsor, also responded to patients' letters confirming that the "NEI is fully supported by the 'Center for Disease Control and Prevention' and 'National Institute of Health.'"

Additionally, NJ Legislators have informed us they are being told that New Jersey doctors can treat Lyme however they want, which is not the situation at all.

More Details About Proposed Center
This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy. The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.

We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment. If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.

At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."