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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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CFIDSLink May 2007 e-newsletter
Thursday 3 May 2007
The contents are outlined below: |
| In this Issue |
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| • | From the Desk of Kim McCleary |
| • | Research!America Features CFS |
| • | Research Matters Neuroimaging Tracks Fatigue in CFS Cellular and Genetic Studies Under Way |
| • | Federal CFS Advisory Committee Update |
| • | CFS Photo Exhibit Goes to D.C.’s Union Station |
| • | Media Coverage Continues |
| • | Taking Your Message to the Street Virtual Lobby Day Begins Awareness Day is May 12 Tell Your Story |
| • | CFS Seminar in Houston June 9 |
| • | Personal Stories: Michelle Franklin |
| • | Bulletin Board Notices |
From the Desk of Kim McCleary
Advocacy is about making people aware of an important issue and moving them to action that will yield tangible benefits. May is full of activities and opportunities to do just that. CFIDS Association president and CEO Kim McCleary gives a full rundown. See http://www.cfids.org/cfidslink/2007/050701.asp.
Research!America Features CFS
Research!America is featuring CFS in the latest installment of its series "Investment in Research Saves Lives and Money." Lawmakers, health agency leaders, public health officials, research academics, governors, state legislators and media professionals will receive this flier in May. You can get a copy, too.
See http://www.cfids.org/cfidslink/2007/050702.asp.
Research Matters
Neuroimaging Tracks Fatigue in CFS
A team of researchers recently set out to explore the association between subjectively reported feelings of mental fatigue and the underlying brain activity during fatiguing cognition. Their methods and results are summarized here.
See http://www.cfids.org/cfidslink/2007/050703.asp.
Cellular and Genetic Studies Under Way
Four CFIDS Association-funded studies are under way and a fifth is getting started. Here’s a short briefing on three of these studies that focus on infectious agents, immune system dysfunction and viral proteins, respectively.
See http://www.cfids.org/cfidslink/2007/050704.asp.
Federal CFS Advisory Committee Update
The Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) will meet in Washington, D.C., on May 16-17. New appointees to the committee have been named.
See http://www.cfids.org/cfidslink/2007/050705.asp.
CFS Photo Exhibit Goes to D.C.’s Union Station
The next stop for the traveling photo exhibit will be Union Station in Washington, D.C.—the most visited site in the city. The exhibit, “The Faces of Chronic Fatigue Syndrome,” will be in Union Station’s West Hall from May 21 to June 2. Not only is Union Station a daily stop for commuters, it’s a tourist destination that draws visitors from across the world. People come for transportation, shopping, dining and special events like the CFS photo exhibit. In fact, more than 32 million people a year, or about 80,000 a day, visit this historic landmark. If you—or your friends or family—are in the greater D.C. area, be sure to put this on your calendars!
See http://www.cfids.org/sparkcfs/photo.asp.
Media Coverage Continues
CFS continues to get national and regional media coverage generated by the Spark public awareness campaign. Lou Adler's nationally syndicated radio show is just part of the media coverage happening in May.
See http://www.cfids.org/cfidslink/2007/050706.asp.
Taking Your Message to the Street
Virtual Lobby Day Begins
On May 15, people with CFS, their friends and family, and medical professionals representing 19 states and the District of Columbia will be on Capitol Hill to push lawmakers to make CFS a public health and research priority. To pave their way and add volume to their message, we'll kick off our fourth annual Virtual Lobby Day on May 11 with a series of easy activities you can do from your home or office computer. Add strength to efforts happening in Washington, D.C., and across the nation that week. All you have to do is sign up now to receive action alerts through our Grassroots Action Center, and you'll be notified of these and other timely opportunities to contact lawmakers, health policy leaders and the media.
Visit http://capwiz.com/cfids/mlm/signup.
Awareness Day is May 12
May 12 marks CFIDS/CFS/ME Awareness Day, and groups around the country are planning activities. The Association has assembled a comprehensive packet of information you can use to help educate others and raise awareness about this illness. Download a copy of our advocacy/media packet at http://www.cfids.org/advocacy/awareness-day.asp.
Tell Your Story
You don't have to go to D.C. or beat the pavement to tell your story about CFS. MyCause gives you an online way to spread the word and push for change. What better way to make the most of Awareness Day!
See http://www.cfids.org/cfidslink/2007/050707.asp.
CFS Seminar in Houston June 9
On Saturday, June 9, in Houston, Texas, the CFIDS Association of America will sponsor another seminar in its Education and Empowerment series—where we bring the CFS experts to you. Join us at the InterContinental Houston for kNOw MORE CFS, featuring Dr. Christopher Snell and Dr. Morris Papernik. Association president Kim McCleary is also a speaker.
See http://www.cfids.org/cfidslink/2007/050708.asp.
Personal Stories: Michelle Franklin
Michelle Franklin has lived through a lifetime of strife surrounding her health and battle with CFS—one that's touched nearly every aspect of her life. Here she tells the unvarnished story of her pain and struggle. Why? Because she knows the CFIDSLink is one of the few forums where people may actually understand her experience.
See http://www.cfids.org/cfidslink/2007/050709.asp.
Bulletin Board Notices
Visit http://www.cfids.org/community/bulletin-board.asp for up-to-date news and happenings within the CFS community.
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