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May - June 1999

Media Watch

Thanks to those who have been working with the media to increase awareness of CFIDS. This update shows the success we’re having, and responses by the CFIDS Public Relations (CPR) Team to particularly positive or troublesome reports.  Please clip articles about CFIDS, note the name and date of the publication, and send to CPR Team,  PO Box 220398, Charlotte NC 28222-0398. Send a note to that address or E-mail to kphopkins@cfids.org to join the team.

Cher
April 11, 1999, VH-1 (cable TV). A brief portion of a 90-minute docmentary discussed Cher's two years of being virtually bedridden with "chronic fatigue syndrome, also known as Epstein-Barr syndrome."  

April 16, 1999, CNN, "Larry King Live." In response to a caller's request to explain how she recovered from chronic fatigue syndrome, Cher said she struggled for two years with unsympathetic doctors, but she got better after receiving homeopathic treatments and vitamins and minerals from a holistic doctor. Larry King noted that some believe the illness is imagined, and Cher responded, "I know that I wasn't talking myself into it." Cher is promoting a new movie.

Newspapers
CPR ALERT! March 16, 1999, New York Times, "When Symptoms are Obvious, but Cause is Not," by Jane E. Brody. Article suggested that investigators should give up the "fruitless search for specific causes" of CFIDS, fibromyalgia, multiple chemical sensitivities, sick building syndrome, Gulf war syndrome and more. The article quoted Capt. Kenneth Hyams, head of epidemiology for the U.S. Naval Medical Research Center; Dr. Simon Wessely, professor of psychological medicine at Kings College in London; and Elaine Showalter, professor of humanities at Princeton University. It promoted a psychological basis for CFIDS and Dr. Wessely's treatment program of graded exercise and behavioral therapy, although it did state that patients are truly sick.

CPR RESPONSE! On March 23, The New York Times published four letters to the editor under the headline, "Looking beyond the symptoms." Among those published letters, Marcia Nelson of Grand Blanc, Mich., wrote, "To stop the search for a cause and cure is to dignify those ignorant opinions and take dignity away from the sufferers of this disease." Dr. Judith A. Richman of Chicago wrote, "A more thorough presentation of the views among professionals about the nature of chronic fatigue syndrome and related disorders would have been far more enlightening." Thanks to all who responded!

March 9, 1999, MetroWest Daily News, Framingham, Mass., "Chronic Fatigue Syndrome: Managing Persistent Feelings of Exhaustion." In a Healthwatch column, MetroWest Medical Center CEO Thomas Hennessy and Dr. Harold Larson describe the seriousness of the illness and general treatment guidelines.

On the airwaves
March 1999, "Health Diary," a weekly public television program. A report on CFS treated the illness seriously and featured two patients, a lawyer and a surgeon, who talked about the disabling effects of the illness. Find a transcript at www.healthdiary.com.

April 1, 1999, WESH-TV, Channel 2, Central Florida. A five-minute segment on "A Closer Look," narrated by Dr. Todd Husty, focused on fatigue, featuring CFIDS patients Janet Bamford and Dora Lucas from the Central Florida CFIDS Support Group. Janet's doctor, Alison Hanley, also was interviewed. Leslie Pallone reported that the show conveyed the message that CFS is real, that there is no cure, that it is very debilitating, that physicians can treat patients to improve their quality of life, and patients can help themselves with healthy diet and light exercise. Information on the local support group and the CFIDS Association's toll-free information line was included.

Magazines
April 1999, Popular Science, "Gulf War Illness: Finally, an Answer," by Gunjan Sinha. Article reports Dr. Garth Nicolson's theory that mycoplasmas are responsible for Gulf War syndrome and that doxycycline is a viable treatment. On April 14, the San Diego Union also wrote about Dr. Nicolson's theory. Both articles reported the upcoming federal study to test the theory (see Research News this issue).

March 1999, Advance Laboratory, "Finding the Missing Link," by Pamela T. Peterson. Article in magazine for lab administrators reported the new prevalence figures for CFIDS and quoted Drs. Natelson, Streeten, Knox and Dunstan about ongoing research to identify markers for subsets of patients. The article affirmed the validity of the illness and the urgency of the research.