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Spring 2001

Media Watch
A report on coverage of CFIDS in the mainstream media.

TODAY show interview gets response. On Feb. 1, the TODAY show interviewed Dr. Karen Sarpolis about the causes of fatigue. Dr. Sarpolis, who manages two women’s health pages on the Internet, was asked by Katie Couric about chronic fatigue and immune dysfunction syndrome (CFIDS).

Sarpolis said that CFIDS "only affects about 10 in 100,000 women" and has a sudden onset. The CFIDS Association of America and many CFIDS Public Relations Team members contacted Dr. Sarpolis to correct misinformation about the illness.

Oregonian addresses fatigue. An article in the Feb. 11 issue of The Oregonian newspaper described the effects of CFIDS on patients’ lives, discussed neurological research on the illness, and profiled Floyd Skloot, an award-winning writer and person with CFIDS (PWC).

Author Patrick O’Neill noted that although there is growing awareness of chronic fatigue syndrome, "it is certainly one of the most frustrating [illnesses] for physicians and patients alike."

AACFS meeting fuels media coverage. The fifth International American Association for Chronic Fatigue Syndrome (AACFS) conference in Seattle, Jan. 27-29, generated widespread media coverage. Articles appeared online via Reuters Health and HealthScout and in local newspapers. Highlighted in the media were studies on immunomodulation using surgical lymph node extraction, gamma globulin therapy, and CFIDS’ overlap with Gulf War illnesses.

Oprah show contemplates illness origins. In early February, Oprah Winfrey’s television show invited individuals who believed they had CFIDS or fibromyalgia (FM) "as a consequence of not nurturing their mind or spirit" to appear on a show about health problems resulting from a loss of spirit.

Thanks to CFIDS advocates, the show removed references to CFIDS and FM from its invitation and avoided fueling misperceptions about the illnesses.

PWC Carole Anne Damon created an online petition requesting a more accurate show about CFIDS be done, and more than 1,000 signatures have been collected.

Dr. Strauss draws fire. The April 3 New York Times published an interview with Dr. Stephen Straus, a former CFIDS researcher at the National Institutes of Health and now director of the National Center for Complementary and Alternative Medicine. Dr. Straus said, "Individuals who have [CFIDS] for many years lose hope. They then take on a series of maladaptive behaviors which sustain their illness because they become so focused and so phobic."

The Association wrote a letter to the editor pointing out that Dr. Straus blames the victim by suggesting that persons with CFIDS perpetuate their own illness. The Association also informed the newspaper’s editors that current research from well-respected sources has shown CFIDS is rooted in biological, not behavioral, factors.

PWC in the News. The March 9 issue of The Washington Post printed a comprehensive article on Laura Hillenbrand’s book, Seabiscuit, and her struggle with CFIDS. The book has sparked extensive media coverage, including interviews on NBC Nightly News and National Public Radio. A feature story on Hillenbrand will also appear in an upcoming issue of The CFIDS Chronicle.