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ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001
Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP: Contact Fibromyalgia SA at the Arthritis Foundation of SA 118 Richmond Road, Marleston 5033 Ph: (08) 8379 5711 |
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.
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Disclaimer
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.
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Support sought for US Bill
Tuesday 8 May 2007
Cort Johnson, of CFS Phoenix, has alerted us to difficulties facing the Nevada CFS Research Center.
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Please note: non-USA residents cannot participate in the feedback process mentioned below |
Here is the message from Cort:
The Nevada CFS Research Center, the first state CFS research Center – and, in fact, the only CFS research center in the U.S. – is in peril. We thought funding for the building was assured but last month some Nevada legislators began to raise a stink about ‘non-essential’ items in the budget, one of which involved funding for build the research center. Although the total funding of these items totalled some $300 million dollars, of which the Nevada Research Center accounted for only $3 million dollars, when the media talked about these projects they invariably referred to the ‘Chronic Fatigue Research Center’.
This center, if you have forgotten, will have a research component, a treatment center led by the pioneer CFS physician Dr. Peterson, a tissue bank, as well as an education component for medical students. The HHV-6 Foundation is associated with it and Dr. De Meirleir is reported to be as well.
The bill for the Center will come up next week. Please use the URL below to provide comments on the bill to Nevada legislators. Even if you are not from Nevada or even from the US please let the Nevada legislature know that this bill is being followed with concern by CFS/ME patients everywhere. We don’t have this kind of opportunity often.
Cort also alterted us to the following message he received from Annette Whittmore, who has led the charge for the Center (Andrea Whittmore’s daughter has CFS):
Dear Family and Friends,
Our bill 316 will be heard not this week but next week.
The website is: Share your Opinion with the Legislature
Type in or choose “bill
AB 316”
and add your comments and vote yes for this bill.
Please send this to all of your family and friends asking for their
support
of this project for you. We need this support to help the legislators
understand the importance of this bill. Thank you!
Annette has pointed out the following:
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More people have CFS than have lung cancer, lupus or multiple sclerosis yet not one publicly funded Center for CFS research exists. |
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A recent study estimates CFS costs the US economy $25 billion a year yet the NIH and CDC combined spend less than $10 million on CFS research. |
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Building a CFS center in Nevada will not help many people with CFS but will make Nevada the leader in the research and treatment of what Dr Reeves of the CDC has called a “major health public concern”. |
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