New Jersey Legislation

Background

In 1996 New Jersey ME/CFS Association (NJMECFSA) Vice President Mary “Ellen” McNamara proposed a state legislation project to the organization. A few years earlier the Massachusetts CFIDS Association launched “CFIDS Bill No. 3738” that had been approved by their health care committee a step forward she viewed as promising. Deciding to go ahead with a project in New Jersey, a five-member project team was formed comprised of three NJMECFSA officers, one trustee, and one member tasked to write a CFS bill and get it signed into law. The endeavor tested whether our system of government, representative democracy-- “government of the people, by the people, for the people” --could help ME/CFS patients get needed services.

Project Plan

Bills passed successfully for other diseases were studied as models during the planning phase. NJMECFSA Trustee and Librarian Elizabeth “Betty” McConnell also assembled books, articles and other helpful resources describing required steps in the legislative process. Ultimately a three-stage project plan evolved and was carried out as follows. One, Attorney and NJMECFSA member Jeffrey Pompeo drafted a CFS Bill and used his legal expertise and knowledge of the disease’s devastating impact on patients and families to see it through the legislative process. Two, NJMECFSA President Jon Sterling secured Senate and Assembly sponsors for the Bill and used his leadership skills and knowledge of the disease’s impact on the state’s estimated 17,000 patients to present expert testimony to the Health Committees. And three, Ellen McNamara applied her corporate experience to organize and direct a grassroots lobbying campaign which enabled large numbers of patients, family members, and other interested parties to contact legislators particularly Health Committee members asking them to support the CFS Bill. Hundreds of pre-printed, pre-addressed “postcards” were produced on a home computer and dot matrix printer then sent to county leaders in NJMECFSA’s statewide support group network for distribution.

Legislative Process

On March 20, 1997 the first draft of New Jersey CFS Bill A2834 was reviewed and marked up by legislative staff and NJMECFSA. On January 13, 1998 the CFS Bill was formally introduced to the state Assembly, re-assigned the number A507 for the new legislative session, and referred to the Assembly Health Committee. On May 18, 1998 CFS Bill A507 was passed by the Assembly -- 75 in favor, 0 against, with one abstention. It was then sent to the Senate and referred to the Senate Health Committee for review. On January 12, 1999 Senate Bill S1028 [identical to A507] passed unanimously– 30 in favor, 0 against and was sent back to the Assembly for final concurrence. On February 18, 1999 CFS Bill A507 now incorporating all revisions made during the review process was passed unanimously by the Assembly – 76 in favor, 0 against, and 0 abstaining. Primary sponsors of the Bill were Assemblymen Gerald H. Zecker, [R 34th District] and Kenneth C. LeFevre, [R 2nd District]. Co-Sponsors were Senators Norman M. Robertson, [R 34th District], Diane Allen, [R 7th District], and Anthony R Bucco, [R 25th District], along with Assemblyman Reid Gusciora, [D 15th District], and Assemblywoman Bonnie Watson Coleman [D 15th District].

(Interestingly in 2015 after serving eight consecutive terms in the NJ Legislature, Coleman was elected to the U.S. Congress representing New Jersey’s 12th Congressional District encompassing Trenton and Princeton. Coleman serves on the Congressional Caucus for Women’s Issues and is “fighting for women, economic and socially disadvantaged populations, and other vulnerable groups in our society".)

Key to passage of the CFS Bill was compelling testimony given by Jon Sterling and Jeff Pompeo speaking on behalf of thousands of patients. It covered the myths surrounding CFS, including the fact that the name “Chronic Fatigue Syndrome” is a misnomer; the difference between CFS and Lyme disease; and the theories concerning the type of illness CFS is believed to be, including virus, immune dysfunction and brain dysfunction. It emphasized the dramatic and far reaching effects of CFS, including the inability to work; disintegration of marriages and families; loss of homes to foreclosure; bankruptcy filings; and suicide. Pompeo, an attorney, described several cases in which federal courts recognized CFS and awarded Social Security benefits to CFS patients. A court’s conclusion in one case was read to the Health Committees: “[CFS] interferes with ‘the concentration needed for work and the enthusiasm needed to have fun.’” By April 16, 1999 the CFS Bill had been approved by both houses of the state legislature and sent to the Governor for consideration.

Bill Signing

Governor Christine Todd Whitman approved and signed the CFS Bill into law. In June 1999 a ceremonial meeting took place in the Governor’s office in Trenton that included Governor Whitman; a primary sponsor of the Bill; NJMECFSA; the Academy of Medicine; and the State Health Department [photo]. Interviewed by Jane Perlmutter, Director, CFIDS Activation Network (CAN) a non-profit action and advocacy organization based in Larchmont, NY, Ellen McNamara reflected on factors leading to the successful passage of the CFS Bill. She highlighted teamwork and a willingness to compromise; proactively writing the Bill to expedite the process; and using a lobbying method that accommodated patients’ disabilities giving them a “voice” in the process. Standard lobbying practice would have involved staging large State House and public hearing demonstrations which were not physically possible due to PEM/PENE, whereas “postcards” could be mass produced and were easy for patients to sign and mail.

Enactment

New Jersey CFS Bill A507 established a chronic fatigue syndrome program in the Department of Health and Senior Services and appropriated $95,000 for the development of a CFS Physician’s Manual.7 Following the Bill’s passage in 1999, NJMECFSA President Jon Sterling organized a 20-member writing committee comprised of physicians, healthcare professionals, and consulting advisors. He then spearheaded a four-year project culminating with the 2002 publication of “A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome” in collaboration with the New Jersey State Department of Health, the Academy of Medicine, and the University of Medicine and Dentistry of New Jersey.

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.

See Chronic Fatigue and Immune Dysfunction Syndrome.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

post-exertional neuroimmune exhaustion (PENE) - An alternative term for post-exertional malaise (PEM), used by people who find that the word 'malaise' fails to capture the serious nature of the condition. Used in the Institute of Medicine (IOM) report.

See post-exertional neuroimmune exhaustion.