Monday, July 13, 2009

NJ Center for Excellence

Hello CFS Friends:

Fantastic news!  The New Jersey Assembly has unanimously passed AR
202 which will fund a Center of Excellence in New Jersey for Chronic
Neuroendocrine Immune Disorders, which includes CFS, FM, and related
illnesses.  Link to
for full information on this resolution.  The Assembly voted
unanimously for this legislation.

It is now going to the New Jersey House as SR 133, link to for the full details.

So if you know anyone in New Jersey, now is the time to encourage
them to contact their state senators to fund a New Jersey Center of Excellence.

The Nevada Center of Excellence - spearheaded by Annette Whittemore,
was the first such Center of Excellence Established.  Placing another
Center of Excellence in New Jersey will allow for networking
opportunities and also be a resource for CFS/ME patients on the East
Coast of the US.

Marla Silverman, Ken Friedman and others have been working tirelessly
on this project, and PANDORA will close its offices to all other
business for the next six weeks to focus on this project.

Below is the wording of the Resolution.

Rebecca Artman






Sponsored by:

District 17 (Middlesex and Somerset)

Assemblyman HERB CONAWAY, JR.
District 7 (Burlington and Camden)

Assemblywoman CONNIE WAGNER
District 38 (Bergen)


      Urges Governor and memorializes Congress to encourage
establishment of research center in New Jersey dedicated to chronic
neuroendocrine immune disorders.

      As introduced.

An Assembly Resolution urging the Governor and memorializing Congress
to encourage the establishment of a research center in New Jersey
dedicated to chronic neuroendocrine immune disorders.

Whereas, Neuroendocrine immune disorders (NEIDs) currently include
Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf
War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome,
and other environmental illnesses; and

Whereas, Chronic Fatigue Syndrome/Myalgic Encephalopathy,
Fibromyalgia, Gulf War illness, Lyme disease, and Multiple Chemical
Sensitivity Syndrome have been characterized as being as disabling as
Chronic Obstructive Pulmonary disease, End-stage Renal failure, and
Rheumatoid Arthritis; and as life-impairing as Multiple Sclerosis,
AIDS, and cancer chemotherapy treatments; and

Whereas, The mechanisms of transmission of NEIDs include
parasite-borne infections; and

Whereas, The similarity of symptoms of NEIDs imply a common
pathophysiology of these illnesses; therefore, discoveries and
advances made in the etiology and treatment of any one of these
illnesses will be applicable and beneficial to the other NEIDs
because of their common pathophysiology; and

Whereas, An estimated 20 million American adults and children suffer
with NEIDs; and

Whereas, The time from illness onset to diagnosis of NEIDs is
approximately three to seven years, except for Lyme disease which may
take decades to diagnose; and

Whereas, There is mounting evidence of similarities of presentation
and origins of NEIDs with Autism, Alzheimer's disease, Multiple
Sclerosis, Lupus, Parkinson's and other autoimmune diseases; and

Whereas, Having a research center in this State is essential to:
promoting research into the etiology of, and therapeutic
interventions for, NEIDs; establishing treatment protocols and
providing patient care for all individuals in the State of New Jersey
afflicted with NEIDs; serving as a repository for NEIDs research
data, patient data and research publications; serving as a resource
for NEIDs researchers by sponsoring scientific meetings and
encouraging discourse among researchers; serving as a tertiary
resource for both physicians and patients in their efforts to manage
NEIDs; and advancing both NEIDs research and patient care by
disseminating the most recent advances in NEIDs research, diagnostics
and treatment protocols; now, therefore,

Be It Resolved by the General Assembly of the State of New Jersey:

      1.    This House urges the Governor to encourage the
establishment of a research center in this State dedicated to chronic
neuroendocrine immune disorder;

      2.    This House respectfully memorializes Congress to
encourage the establishment of a research center in this State
dedicated to chronic neuroendocrine immune disorders.

      3.    Duly authenticated copies of this resolution, signed by
the Speaker of the General Assembly and attested by the Clerk
thereof, shall be transmitted to:

      a.     Governor Corzine and the Commissioner of Health and
Senior Services; and

      b.    The Majority and Minority Leaders of the United States
Senate, the Speaker and Minority Leader of the United States House of
Representatives, and to every member of the United States Congress
from this State.


      This resolution urges the Governor and respectfully
memorializes Congress to encourage the establishment of a research
center in New Jersey dedicated to understanding and treating chronic
neuroendocrine immune illnesses (NEIDs) such as Chronic Fatigue
Syndrome/Myalgic Encephalopathy (CFS/ME), Fibromyalgia, Gulf War
illness, Lyme disease and Multiple Chemical Sensitivity Syndrome.

      It is estimated by the Centers for Disease Control and
Prevention (CDC) that CFS/ME affects between one and four million
Americans and that 85% of individuals suffering with this
debilitating and disabling illness have not been properly
diagnosed.  The economic impact and loss of worker productivity in
the United States due to CFS/ME, alone, is estimated to be over $9
billion per year.  Census data, and the incidence rate of CFS in the
United States, projects that an estimated 28,000 to 30,000 citizens
of New Jersey will suffer from CFS/ME.  The symptoms of CFS/ME
include flu-like symptoms (sore throat, fever, chills, tender neck
and armpit lymph nodes, unrefreshing or non-restorative sleep,
headaches, and post-exertional malaise lasting more than 24 hours),
as well as body-wide muscle and joint pain, cognitive impairment, and
short term memory loss.

      The CDC reports that Fibromyalgia (FM) affects five million
women, men, and children in the United States.  FM is a condition
characterized by body-wide muscle pain, tender points, sleep
disturbance, cognitive impairment ("fibro-fog" or "brain fog"),
overwhelming fatigue, swelling, joint pain, non-restorative sleep and
migraine headaches.

      According to the Research Advisory Committee on Gulf War
Veterans' Illnesses, Gulf War illness (GWI) is estimated to affect
between 175,000 to 200,000 U.S. veterans, some of whom have been
suffering for over 17 years.  GWI is characterized by multiple,
diverse symptoms that include a combination of memory and
concentration problems, chronic headache, unexplained fatigue,
widespread pain, chronic digestive problems, respiratory symptoms,
and skin rashes.

      The CDC has announced that Lyme disease is the
fastest-spreading infectious disease in the United States, and that
New Jersey ranks third in the nation for reported cases of Lyme
disease. Yet, Lyme disease is seriously underreported in the United
States.  Current literature suggests that co-infections associated
with Lyme disease play a major role in precipitating chronic illness
with symptoms that include flu-like symptoms, extreme fatigue, skin
rashes, unexplained weight gain or loss, other endocrine disorders,
urinary problems, sexual and reproductive dysfunction,
gastrointestinal dysfunction, heart problems, joint pain or swelling,
muscle twitching and muscle pain, peripheral neuropathy, vision
and/or hearing problems, disorientation, psychiatric disorders,
cognitive dysfunction, disturbed sleep, and poor balance.

      Multiple Chemical Sensitivity Syndrome and other environmental
illnesses are estimated to affect 10% of the American
population.  These illnesses have a variable, and overlapping
presentation with other NEIDs, and have symptoms that include any
combination of extreme fatigue/lethargy, muscle/joint pain, sleep
disturbances, headaches/migraine headaches, sensitivity to light and
noise, dizziness/vertigo, poor memory/poor concentration,
nausea/digestive problems, sore throat, constant coughing, wheezing,
skin rashes or burning/stinging eyes.

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