CFIDS News
Keeping you up-to-date on recent events across the national and around the world

PWC qualifies for Paralympics
Kebbie Cannon, who has had chronic fatigue and immune dysfunction syndrome (CFIDS) since 1987, recently qualified for the 2000 Paralympics in Sydney, Australia. She will participate in the dressage event, where riders take their horses through a complicated set of gaits and intricate patterns in the ring.

Kebbie, who lives in Charlotte, N.C., is currently seeking funding to continue her training for the Para-lympic Team, which will
compete in October. Kebbie’s story about how therapeutic horsemanship has helped her was featured in the November/December 1999 Chronicle.

Plan for AACFS conference
If you are interested in attending the American Asso-ciation for Chronic Fatigue Syndrome’s (AACFS’s) fifth international conference January 26-29 in Seattle, Wash., now is the time to make plans. The program will feature separate research, clinical and patient meetings.

You can register for the conference on the web.  The host hotel is the Westcoast Grand Hotel Seattle. To make reservations, call 800/325-4000 and ask for the AACFS conference rates.

CFIDS grant funded
The U.S. Department of Education National Institute of Disability and Rehabilitation Research (NIDRR) announced in June the award of its first CFS research grant.

Dr. Renee Taylor and Dr. Leonard Jason of DePaul University will work with the Access Living organization and the Chicago Chronic Fatigue Syndrome Association to test the effect of a community-based assistance program on quality of life, functional capacity, illness severity, coping and service utilization among individuals with CFS.

A resource manual will be developed as part of the project and disseminated to other PWCs, researchers, treatment providers, policy makers and self-help groups nationwide.

FAME looks at fibromyalgia
The Fibromyalgia Awareness Main Event 2000 Patient Conference, held May 19-21, took a comprehensive look at research and treatment for the illness. Presentations included Dr. Roland Staud on exercise and pain, Dr. Steve Fanto on pain management and Dr. Mary Hardy on evaluating alternative treatments.

For summaries of some of the conference presentations, visit ProHealth’s web site.

IBS drug side effects
There have been 16 reported cases of women suffering serious intestinal side effects—some requiring surgery—after using the new irritable bowel syndrome (IBS) drug Lotronex.

Concerned that some of the side effects appear to be caused by doctors prescribing Lotronex inappropriately, the Food and Drug Administration (FDA) has convened a panel of scientific advisers to debate its risks.

In the meantime, the FDA has approved another drug, Zelmac, for the treatment of abdominal pain and discomfort and constipation in women with IBS. Lotronex treats IBS where the predominant syptom is diarrhea.

Beware of Chinese herb
A commonly used Chinese herb, Aristolochia fangchi, may cause cancer.  In the June 8 issue of the New England Journal of Medicine, researchers present evidence that the herb was associated with a type
of bladder cancer in a group of Belgian patients.

Persons with CFIDS (PWCs) should be aware that Aristolochia fangchi is included in many Chinese herbal formulas, including Gui Pi Wan, which claims to ease digestive and other ailments.