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In this Issue
- From the Desk of Kim McCleary
- Grassroots Champions
- CFSAC Charter Renewed
- Research Published on Post-Infective Fatigue
- For Your Doc: Exercise and CFS
- CFS in the News
- Photo Exhibit to Salt Lake City and Sacramento
- CFS Experts in Sacramento October 28
- Personal Story: Jennifer Warner
From the Desk of Kim McCleary
There's no doubt that technology has changed the world as we know it. But to those with CFS, online communication has significantly expanded the possibilities and power at hand. CFIDS Association President Kim McCleary outlines the impact on the CFS landscape and the Association's efforts. Read on at http://www.cfids.org/cfidslink/2006/sept-ftdo.asp.
Grassroots Champions: Honoring Our Action Center Super-Users!
CFS can limit your energy, but it doesn’t have to limit your ability to make an impact in the fight against CFS. A growing number of advocates are making their voices heard without ever leaving their desks or homes. The CFIDS Association honors these Grassroots Champions and shares their stories.
CFSAC Charter Renewed
We are delighted to announce that the CFS Advisory Committee has just been renewed for two years, authorized by Secretary of Health Mike Leavitt, effective September 5, 2006. The CFS Advisory Committee is an important forum for the discussion of health policy as it relates to chronic fatigue syndrome. Such
disease-specific committees are fairly rare and this one has been important to the ongoing coordination of federal research and education efforts, as well as providing CFIDS advocates with the opportunity to provide input on decisions that affect them. Thanks to all the advocates—including 41 members of Congress who wrote to Secretary Leavitt asking him to renew the charter.
For more information, visit the committee's web site at http://www.hhs.gov/advcomcfs/index.html.
Background information about the committee and links to reports on recent meetings can be found at http://www.cfids.org/advocacy/CFSAC.asp.
To thank Secretary Leavitt see http://capwiz.com/cfids/issues/alert/?alertid=9002771&type=ML.
Research Published on Post-Infective Fatigue
The high-profile medical journal BMJ has published a study on post-infective fatigue from leading CFS researchers including Andrew Lloyd of the University of New South Wales and William Reeves and Suzanne Vernon of the CDC. Read on at http://www.cfids.org/cfidslink/2006/pifs.asp.
For Your Doc: Exercise and CFS
Exercise is a touchy and often misunderstood subject between health care professionals and their patients with CFS. While avoiding deconditioning may benefit a person with CFS, the common concept of "exercise" can cause serious relapse and an increase of symptoms. This handout provides insight from three CFS clinicians on the appropriate use of exercise when treating CFS. |
CFS in the News
CFS and the public awareness campaign have been getting a flurry of media coverage from regional to national. Here's a quick recap of coverage including a link to a rundown of stories that you can read for yourself. Read on at http://www.cfids.org/cfidslink/2006/cfs-news.asp.
Photo Exhibit to Salt Lake City and Sacramento
The CFS photo exhibit, "The Faces of Chronic Fatigue Syndrome," was a big hit at the Mall of America in Minnesota in August. Next, CFS patients, family members, health care professionals and the general public will have the opportunity to view this dynamic and educational exhibit at the Salt Lake City Main Library from October 4-7. Then, the exhibit travels to Sacramento, where participants in the CFIDS Association's kNOw MORE seminar can view it on October 28.
CFS Experts in Sacramento October 28
Until there is no more CFS, it's vitally important for patients, caregivers and clinicians to know more about this illness. That's why the CFIDS Association is bringing recognized CFS authorities Dr. Leonard Jason and Dr. Charles Lapp to Sacramento, California, October 28 to share their expertise on the topic. It’s all part of the Association's kNOw MORE CFS seminar series.
As a bonus, seminar participants will also have the opportunity to view the traveling "Faces of Chronic Fatigue Syndrome" photo exhibit. For more details visit http://www.cfids.org/cfidslink/2006/sacramento.asp.
Personal Story: Jennifer Warner
TV producer and health enthusiast Jennifer Warner describes her journey from the New York City Marathon finish line to arriving at the starting gate of her CFS diagnosis.