POLITICAL ACTION: New Year's Eve Action Alert regarding proposed NJ legislation

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 and contact info.

BACKGROUND: For those who need background information on the issue: In 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.