CFIDSLink is e-mailed monthly free of charge to all those interested. To sign up for the electronic newsletter visit http://www.cfids.org/subscribe.asp.

 
In this Issue

• From the desk ofKim McCleary
• kNOw MORE CFS Seminar a Success
• Living with CFIDS: Personal Stories
• Sleep and CFIDS
• 2004 Annual Report set to mail
• From Survivor to Thriver
• Bulletin Board page

From the desk of Kim McCleary
In 1987 the CFIDS Association of America was formed with a mission to conquer chronic fatigue and immune dysfunction syndrome. In its own small way, this new organization was setting out to change the world.  Visit http://www.cfids.org/cfidslink/2005/july-ftdo.asp to read how far we have come.

kNOw MORE CFS Seminar a Success
More than 150 people with CFIDS, caregivers, support group leaders and health care providers gathered at the Bechtel Conference Center in Reston , VA for the Association’s first kNOw MORE CFS Education and Empowerment seminar.

Working in partnership with the Northern Virginia CFS/FMS Support Group, the Association-sponsored half-day program featured CFS experts Dr. Lucinda Bateman and Staci Stevens, MA.

Dr. Bateman, an internist who has limited her practice to CFS and fibromyalgia patients, shared treatment strategies to help participants maximally manage underlying/overlapping conditions and symptoms. Staci Stevens, an exercise physiologist, discussed energy conservation, balancing rest and activity and how to improve function through a restorative exercise therapy program.

“This event lived up to its name. I left educated and feeling empowered,” remarked attendee Laura F. from Silver Spring, MD.

The next seminar is scheduled for November 13, 2005 in Charlotte, NC. Watch upcoming issues of CFIDSLink for details. Or send an email, subject line KNOW MORE, to cfids@cfids.org and we’ll put you on our mailing list.

Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing stories of how CFIDS impacts their lives and the lives of their families. Stories of profound loss, of anger and acceptance, of a struggle without end. In this month's column, you’ll meet Sharon Greenspan, a former attorney for the Immigration and Naturalization Service who has been suffering with CFIDS for 18 years.

Visit http://www.cfids.org/cfidslink/2005/greenspan.asp to read Sharon’s story, then please consider sharing your own. Send your personal stories to Marcia Harmon at stories@cfids.org.

Sleep and CFIDS
Poor sleep affects 95 percent of people with CFIDS. Last year, the CFIDS Association published an article about sleep, strategies for improving sleep and information on participating in a sleep study (reprinted with permission by the National Sleep Foundation). Visit http://www.cfids.org/archives/2004/2004-1-article01.asp to read more.

2004 Annual Report set to mail
The Association’s 2004 Annual Report details last year’s accomplishments, highlights current projects and gratefully acknowledges many of the donors who have so generously supported the Association’s vital work.

The report will mail in early July and is available at no charge to those who request it. If you are interested in receiving a copy of the 2004 Annual Report, please send an email with your full postal mailing address to cfidslink@cfids.org with “2004 Annual Report” in the subject line. Or call the Resource Line at 704-365-2343. It will also be available in PDF format on the Association’s Web site in early August.

From Survivor to Thriver
The winter 2005 issue of the CFIDS Chronicle featured a story about PWC Marla McKibben who drew on her spiritual courage and business acumen to develop a five-pronged planto manageher illness and bring joy back into her life. Read about her journey by visiting http://www.cfids.org/cfidslink/2005/mckibben.pdf. Then learn more about Pediatric Pennies, a fundraising effort launched to amplify awareness of pediatric chronic fatigue syndrome at http://www.panda-clinic.com/pediatric_pennies.htm.

Bulletin board page
Visit http://www.cfids.org/community/bulletin-board.asp for up-to-date news and happenings within the CFIDS community.