ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Bill approved to fund Neuroendocrine Immune Disorder Center of Excellence
Tuesday 4 August 2009
Research center would be dedicated to ME/CFS, fibromyalgia, Gulf War Illness, Lyme disease, MCS, and other environmental illnesses.
Sat., Jun 27, 2009, via the Co-Cure Listserv: Fantastic news! The New Jersey Assembly has unanimously passed Assembly Resolution 202 to fund a Center of Excellence in New Jersey for Chronic Neuroendocrine Immune Disorders - which include CFS, FM, and related illnesses. [See the full text, attached below, and] link to www.njleg.state.nj.us/bills/BillView.asp for full information on this resolution. The Assembly voted unanimously for this legislation.
The bill is now going to the New Jersey House as Senate Resolution 133. Link to www.njleg.state.nj.us/bills/BillView.asp 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 to be established. Placing another Center of Excellence in New Jersey will allow for networking opportunities and also be a resource for patients on the East Coast of the U.S.
PANDORA Founder Marla Silverman, Board Member Dr. Ken Friedman, PhD, 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, Public Policy & Community Advisor, PANDORA, Inc.
* PANDORA - the non-profit Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy – is based in Coral Gables, Florida.
The above text came from this page. It also contains the text of the Resolution mentioned. Here it is:
ASSEMBLY RESOLUTION No. 202
CURRENT VERSION OF TEXT as introduced.
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
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.
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. -30-
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