• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

NJCFSA Supports the NEI Center with Letter Writing Campaign



This week, the NJCFSA mailed their members the following letter, asking them to send letters of support for the proposed NEI Center in New Jersey. They included two letters addressed to Senators Weinberg and Bateman and even included pre-addressed envelopes to send them in. Their efforts are to be applauded. Thank you NJCFSA for making advocacy an easy task for people with ME/CFS.

[note] I have been given permission to reprint the following letter and have attached pdf files of the letters to the NJ senators.

Dear NJCFSA Member,

Imagine one day having a Center in New Jersey that will provide patient care, patient education and social services for patients with ME/CFS, Fibromyalgia, Gulf War Syndrome/Illness and Multiple chemical sensitivity. Also imagine that this center will promote clinical and scientific research into the etiology of, and therapeutic interventions for neuroendocrineimmune (NEI) disorders.

The goal to establish a NEI Center in New Jersey was initiated by P.A.N.D.O.R.A (Patient Alliance for Neuroendrocrineimmune Disorders Organization for Research and Advocacy), Lanford Foundation-Lifelyme, Inc. and NJCFSA board member, Dr. Kenneth Friedman. In 2009, they envisioned Assembly Resolution (AR) 202, which was sponsored by Assemblymen Chivukula, Conaway, Wagner and Angelini. Assembly Resolution 202 unanimously passed the New Jersey Assembly 78-0. A copy of the resolution can be downloaded on our website: www.njcfsa.org.

Their next step is now upon us. They have envisioned a companion Senate Resolution, Senate Resolution 20, and found the legislative sponsorship of Senator Loretta Weinberg (D), Chair of the Senate Health Committee and Senator, Christopher Kip Bateman (R) , Senate Deputy Conference Leaders. The Resolution awaits passage in the New Jersey State Senate.

The NJCFSA is in total support of P.A.N.D.O.R.A and the Landord Foundation-Lifelyme, Inc. in their efforts to establish the NEI Center in New Jersey. To help them reach their goal, the NJCFSA is writing to our membership to ask you to please help by writing to Senators Weinberg and Bateman.

Please find enclosed a suggested letter requesting support of Senate Resolution 20 for the NeuroEndocrineImmune Center of New Jersey for your consideration. If you are unable to write your own letter, then consider using or modifying the sample letter enclosed. As the suggested letter indicates, it is time to accelerate both research and patient care for Chronic Fatigue Syndrome.


Margaret Walk
President, NJCFSA, Inc.
View attachment Senator Christop&#10.pdf
View attachment Senator Weinberg..pdf


Senior Member
NJ Senate to Vote June 10 on Resolution to Encourage NEI Research Center in State

NJ Senate to Vote June 10 on Resolution to Encourage NeuroEndocrineImmune Research Center in State

June 8, 2010

The New Jersey State Senate will vote on a resolution (Senate Resolution #20) whereby the states Legislature would encourage establishment of a research center in New Jersey dedicated to studying multi-system and complex illnesses such as ME/CFS, FM, MCS, chronic Lyme, and Gulf war illness (collectively termed NeuroEndocrineImmune or NEI diseases).

If this resolution to encourage establishment of a New-Jersey based NEI Center is passed, the legislature would be agreeing to send copies of the resolution to the Governor of New Jersey and Commissioner of Health & Senior Services, and to key members of the U.S. Congress.

The NEI Center is a patient-driven community project of P.A.N.D.O.R.A.* Inc. in partnership with The Lanford Foundation-Lifelyme, Inc. To view their website explaining the envisioned NEI Center, go to www.neicenter.com.

Petition US Secretary of Health to Meet with NEI Center Advocates - Sign Now

P.A.N.D.O.R.A. has posted a petition that advocates can sign online, asking for a meeting with U.S. Secretary of Health Kathleen Sebelius to urge her support for funding of the envisioned NEI Center.
* Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy

Link to petition is here: http://apps.facebook.com/causes/petitions/409#sign