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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 April 2007 e-newsletter
Friday 13 April 2007
The contents are outlined below: |
| In this Issue |
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| • | From the Desk of Kim McCleary |
| • | Research Matters Sleep Dysfunction in CFS Recent Drug Trials Offer Hope |
| • | CFS Goes to Washington Engage, Educate and Inspire at Lobby Day! Traveling Photo Exhibit Will Make a Stop in DC |
| • | More News about the Public Awareness Campaign Balancing Campaign Hopes and Expectations Exciting Preliminary Campaign Statistics |
| • | New Novel from a Familiar Author |
| • | Welcome to the CFS Blogosphere! |
| • | CFS Seminar June 9 in Houston, Texas |
| • | Other Learning Opportunities OFFER 2007 Conference Chronic Illness Initiative Symposium |
| • | CFIDS/CFS/ME Awareness Day Coming in May |
| • | Personal Stories: Seasoned Thoughts |
From the Desk of Kim McCleary
When hundreds of people with CFS gather for education and empowerment, the results can be impressive. The CFIDS Association president and CEO shares her experience at the latest kNOw MORE CFS Seminar. See http://www.cfids.org/cfidslink/2007/040701.asp.
Research Matters
Sleep Dysfunction in CFS
A recent study published in the American Journal of Medicine examined sleep studies of CFS patients. The results confirm several types of specific sleep dysfunctions associated with the illness. See http://www.cfids.org/cfidslink/2007/040708.asp.
Recent Drug Trials Offer Hope
Clinical trials of several potential medications to treat CFS are in various stages of progress. Here’s a report from the Winter 2007 CFIDS Chronicle on three such trials. See http://www.cfids.org/cfidslink/2007/040702.asp.
CFS Goes to Washington
Engage, Educate and Inspire at Lobby Day!
You have a powerful story to tell, whether your own life or a loved one’s has been sidelined by CFS. Be part of the group that will gather on Capitol Hill to share their stories – and action requests – with members of Congress and key staff. Learn more about participating in the CFIDS Association’s 15th Annual Lobby Day on May 14-15. You can even take part in an online “preview” presentation on Thursday, April 11 at 4:30 p.m. to learn more about Lobby Day. It’s easy and fun to use this online system – and to lobby on Capitol Hill! Learn how at http://www.cfids.org/advocacy/webinar.asp. Lobby Day registration forms are due on Monday, April 16; hotel group room rates expire on the same day, so please make plans now! See http://www.cfids.org/advocacy/lobby-day.asp.
Traveling Photo Exhibit Will Make a Stop in DC
The next stop for the photo exhibit will be Union Station in Washington, DC. The exhibit, “The Faces of Chronic Fatigue Syndrome,” will be at Union Station in the West Hall from May 20 to June 2. Union Station is not only a daily stop for commuters, it’s a tourist destination that draws visitors from across the world. More than 32 million people a year, or about 80,000 a day, visit this historic landmark, making it the most visited site in Washington, DC. People come for transportation, shopping, dining and special events like the CFS photo exhibit. If you – or your friends or family – are in the greater DC area, be sure to put this on your calendars! See http://www.cfids.org/sparkcfs/photo.asp.
More News about the Public Awareness Campaign
Balancing Campaign Hopes and Expectations
The entire CFS community has waited so long for the first-ever national CFS public awareness campaign that hopes are riding high. While it’s important to keep our expectations realistic, the campaign is already touching many people across the country. Marcia Harmon, the CFIDS Association’s Director of Communications, shares just one of those personal and moving stories at http://www.cfids.org/cfidslink/2007/040703.asp.
Exciting Preliminary Campaign Statistics
We have some early statistics regarding the national CFS public awareness campaign to share with the CFS community. Although we still have months to go before the campaign concludes, we thought you’d enjoy seeing a few statistical measures of various components, such as the public service announcements, print ads and media coverage so far. See http://www.cfids.org/cfidslink/2007/040707.asp.
New Novel from a Familiar Author
A novel is set to hit the streets this month from Floyd Skloot, a familiar friend of the CFS community. And the subject matter is likely to resonate with people who have a chronic illness like CFS. See http://www.cfids.org/cfidslink/2007/040704.asp.
Welcome to the CFS Blogosphere!
Many people with CFS and Internet access are discovering weblogs (also known as blogs) as a means of sharing information and reducing isolation. Back by popular request, here’s an article from the Summer 2006 CFIDS Chronicle that explores the world of CFS blogging and some of the people who’ve been leading the way. See http://www.cfids.org/cfidslink/2007/040705.asp.
CFS Seminar June 9 in Houston, Texas
Save the date! On Saturday, June 9, 2007, the CFIDS Association of America will sponsor another kNOw MORE CFS seminar at the InterContinental Houston in Houston, Texas. This half-day outreach program will feature two CFS/FM experts speaking on topics of great interest to patients, family members and health care providers. A question-and-answer forum will follow the presentations. Watch upcoming issues of CFIDSLink for more details. Or send an e-mail with “kNOw MORE CFS” in the subject line to cfids@cfids.org, and we’ll put you on our mailing list to receive a brochure in May.
Other Learning Opportunities
OFFER 2007 Conference
OFFER, the Organization for Fatigue & Fibromyalgia Education & Research, is hosting its annual conference May 4 and 5 in Salt Lake City. The event consists of a one-and-a-half-day health care professional conference and a half-day patient conference focused on advances in understanding and treating chronic fatigue syndrome and fibromyalgia. See http://www.offerutah.org/Conference.html.
Chronic Illness Initiative Symposium
The Chronic Illness Initiative – a program at DePaul University to help students with chronic illness get their college degrees – hosts an annual symposium where advocates, educators and students come together to participate in constructive dialogue on subjects that impact the chronically ill college student. This year’s event is May 23 at DePaul University’s Chicago Loop Campus. For more information e-mail CII@depaul.edu (and put “symposium” in the subject line).
CFIDS/CFS/ME Awareness Day Coming in May
People with CFS, their families and friends are encouraged to educate others about the reality and seriousness of CFS on May 12 of every year. The CFIDS Association has compiled a packet of information you can use on CFIDS/CFS/ME Awareness Day or any day of the year. See http://www.cfids.org/advocacy/awareness-day.asp.
Personal Stories: Seasoned Thoughts
This installment of “Personal Stories” features thoughts from two people who share their CFS experiences through well-established CFS weblogs, better known as blogs. Their blogs and others reflect the shared experiences of many people with CFS. See http://www.cfids.org/cfidslink/2007/040706.asp.
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