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In this Issue
March 2006
CFIDSLink Electronic Newsletter 

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

CFIDSLink – March 2006

 

In this Issue

  • Major News Announcement
  • From the Desk of K. Kimberly McCleary
  • Lobby Day 2006
  • Forum and Conference Materials
  • Special Issue Update
  • Brave Hearts
  • New CFS Study Seeks Participants
  • Conferences and Meetings
  • Bulletin Board Notices

 

Major News Announcement
The entire CFS community has waited so long! Now, finally, it’s time to light the  . . .  Spark! The campaign to ignite CFS awareness!

The CFIDS Association will launch a $4 million public awareness campaign on chronic fatigue syndrome this summer. It’s the first national CFS awareness campaign in the history of the illness. The campaign will extend for more than a year, starting with an exciting launch event andmedia blitz in June 2006. Visit http://www.cfids.org/cfidslink/2006/pac.asp for details.


From the Desk of Kim McCleary
A little more than 15 years ago, the cover of Newsweek magazine heralded CFS as a modern medical mystery. Over the last 15 years, media coverage of CFIDS has yielded interesting, sometimes unpredictable, results. Nobody wants another 15 years to pass before we solve the puzzle of CFIDS. I urge you to become a catalyst for change. For more information on how you can get involved and help illuminate CFS visit http://www.cfids.org/cfidslink/2006/march-ftdo.asp.


Lobby Day 2006
The CFIDS Association’s annual Lobby Day is an opportunity for people with CFIDS and those who love them to meet with their members of Congress, tell their stories and educate top lawmakers about CFS and the devastating impact it has on the individual and the communities they represent. To learn more about Lobby Day and how you can get involved -- from Capitol Hill or from home -- visit http://www.cfids.org/advocacy/lobby-day.asp.


Forum and Conference Materials
Several organizations offer recorded presentations by CFIDS and fibromyalgia experts, either for sale or through lending libraries. For a list of these organizations visit http://www.cfids.org/cfidslink/2006/materials.asp.


Special Issue Update
The response to the special issue of the CFIDS Chronicle, the Science & Research of CFS, has been tremendous and the feedback we’re receiving is overwhelmingly positive. Ken from Tennesse says,“Thank you so much for going out on the edge to publish the recent edition of the CFIDS Chronicle. As a longtime CFS patient, I can’t think of any other national or state publication that has the potential for being so helpful.”

Others have described the special issue as “ information-packed” and “ground-breaking.” Though some readers have expressed that the more technical articles have been challenging, many found it rewarding to have an overview of specific research bound into one publication. PWC’s are ordering copies for their doctors and “CFS-aware” doctors are ordering copies for their patients. And at least one large CFS support group is focusing their next meeting on discussing the content.

To order the special issue for yourself (or additional copies for friends, family and physicians), browse the table of contents and review several sample articles, simply visit http://www.cfids.org/special/default.asp.


Brave Hearts
Like the horse she writes about in Seabiscuit, the underdog book about an underdog horse (which was No. 1 on the New York Times best-seller list for 42 weeks), Bethesda native Laura Hillenbrand has triumphed over incredible hardships. Read the story at http://www.bethesdamagazine.com/mar06/bravehearts.php.


New CFS Study Seeks Participants
Dr. Benjamin Natelson and the New Jersey CFS/FM Center associated with UNDMJ – New Jersey Medical School, has begun a study of “brain blood flow during postural challenges in CFS.” To learn more about the study and how to participate, see http://www.cfids.org/cfidslink/2006/natelson.asp.


Conferences and Meetings
March 17-19, 2006, the National Fibromyalgia Association’s FAME 2006 patient conference, “Fibromyalgia Then and Now: The Path to Improved Health,” will launch in Orange County , Calif. This event will offer fibromyalgia patients from around the world workshops and lectures with the foremost researchers and medical professionals working in the field of fibromyalgia. Attendees can also take advantage of The Cruise for a Cause aboard the Queen Mary and “An Introduction to Self-Management for Fibromyalgia,” presented by California State University , Fullerton . FAME workshop topics include Fibromyalgia Research; Novel Treatments in the Management of FMS; Families Coping with Chronic Pain; Taking Charge of Flare-Ups Before They Take Charge of You; How Social Security and Disability Play a Part in Your Recovery; Central Sensitivity Syndrome (CSS): The Concept and the Significance.

The NFA hopes you will join them for this exciting event. For more information, see their listing in our Conferences and Meetings section http://www.cfids.org/community/conf-meetings-interest.asp.


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