1999 CFIDS News

Akers Wheaties box hits stores 
Michelle Akers, veteran star of the U.S. women's soccer team and person with CFIDS (PWC), has recently been honored with her own Wheaties box as part of a General Mills special series. Akers and four other team members will each have their own box with career highlights and a personal tribute on the back. The tribute to Michelle says that she "never gave up on her dreams despite a tough battle with Chronic Fatigue Immune Dysfunction Syndrome. Her determination has provided inspiration for young girls everywhere to believe in themselves and never give up." The boxes began to be rolled out at grocery stores nationwide in late August. Each box, starting with Akers, will appear one at a time over the course of the next five months.

CNN profiles chronic fatigue syndrome
On October 24, CNN aired a segment devoted to exploring progress on chronic fatigue syndrome (CFS) that provided a fairly comprehensive overview of the symptoms and history of the illness. The CNN anchors reporting the story stated up front that the condition is real ("If you think CFS is an invention of hypochondriacs, think again") and began with the statement that it has been 15 years since attention was first focused on CFS, and still there is no known cause or cure.

Michelle Akers and two of the PWCs from the Lake Tahoe outbreak are featured, describing feeling "as if bricks are being piled on you, and you're fighting to move at all." Dr. Dan Petersen expressed his surprise on-camera that CFS research is not further along.

CNN delves into some of the reasons why research has been held up, including interviewing Dr. William Reeves, the  whistleblower who alerted congress to the misappropriation of funds, who goes on-camera stating that the money was taken from CFS because it is perceived as "not as important as other diseases" within the agency.

Educational web site on sleep created
Emilie Sutterlin, 16, a high school student from Annandale, Va. with CFIDS and fibromyalgia (FM),    has led a team of three other students to construct a web site called Sleep from A to Zzz. Topics covered include basic human sleep needs, sleep disorders and research. One page of the site is specifically dedicated to CFIDS, FM and sleep, and many of the guestbook comments pertain to CFIDS. The site is now a semi-finalist in the ThinkQuest Internet Challenge. Students compete to have web pages they create included in the ThinkQuest Internet library, used by millions of educators, students, businesses and government agencies worldwide. Emilie found creating the site to be a good way to connect with other students around the world, despite her condition---her teammates are from Switzerland and Peru.

Billboards create false impression
A picturesque island on the Great Barrier Reef of Australia recently chose to use chronic fatigue syndrome (CFS) in its advertising campaign, and not in a positive way. Billboards placed outside the Melbourne and Sydney airports show a picture of people relaxing in a rowboat with the slogan: "Chronic Fatigue Syndrome. Hamilton. The island that's spoiling Australia." The image suggests that the life of a CFS sufferer is like relaxing on a holiday.

As a result of a CFIDS Public Relations (CPR) Team Alert issued via E-mail, many PWCs wrote to the advertising agency that created the billboards to protest the use of the image and ask for them to be removed. The advertisers have since pulled the campaign.

New initiative to address pain
In a move that some believe could change the face of medical care for all individuals with acute or chronic pain, the U.S. Department of Veterans Affairs has announced that it will initiate a national pain management strategy. Beginning in February 1999, pain became the fifth vital sign---in addition to pulse, temperature, respiration and blood pressure---for which all patients at VA health facilities will be checked. The reason? Substantial evidence indicates that pain is not managed adequately in most US health systems and recent studies indicate as much as 20-30% of the population annually suffers from acute and/or chronic pain.    

Straus moves on
In a surprising move, Stephen Straus, MD, long-time head of the National Institutes of Health (NIH) in-house CFIDS research program and frequent target of ire from patients and their advocates for his apparent bias against CFIDS as a medical illness, has left the CFIDS research arena. On October 5, Dr. Straus was appointed Director of the newly formed National Center for Complementary and Alternative Medicine (NCCAM) at NIH.

Dr. Straus has declined interview requests while he gets settled into his new position, but it appears that he will no longer be conducting CFIDS research. At press time, NIH had not made a determination about the future direction of its CFIDS research program, including if and when a new lead scientist will be named, but has promised to keep the patient community informed. The Association is following up on this important development; watch for updates in the Chronicle.
 
"Mumford" presents questionable picture of CFIDS 

"Mumford," released in late September, became one of the first major motion pictures to feature a character with CFIDS. Although the movie shows CFIDS to be a real but misunderstood illness, there are some serious flaws in the way it is portrayed.

The movie’s premise is that a young man with a past (who moves to Mumford after choosing the same name for himself) sets up shop as a psychologist, without actually being one. One of his patients is Sophie, a young woman with CFIDS. It is very evident that the portrayal of CFIDS was researched by those responsible for the film. Hope Davis, the actress who plays Sophie, is made up to look drained and exhausted. You can see the pain in her face as she walks. When interviewed about her preparation for the role, Davis said that she wore lead weights in her shoes so that she would look like she was weighted down.

Sophie has to leave her job in the city and return to her parents’ home because she can’t care for herself. When her father contacts Dr. Mumford, he says that they have been to many doctors, but keep getting different answers. One of the high points in the portrayal of CFIDS in the film occurs when Dr. Mumford, in an effort to find out more about CFIDS, accesses the CDC’s web site. The camera zooms in and stays focused on the text as he carefully reviews the case definition’s list of symptoms so that the audience can read them too.

When he meets with Sophie for the first time, she describes herself as being tired all the time, but having trouble sleeping. She is achy, has swollen lymph nodes and her throat is sore. She also talks about becoming easily confused. When Dr. Mumford asks how long she has felt this way, she replies, "About six months, but it feels like years." He suggests that they begin their treatment program by taking short walks. Unlike what would happen with most PWCs, her walks get longer and she eventually helps Mumford deliver newspapers on foot. No post-exertional fatigue is ever shown.

The reaction that Sophie receives from other characters in the movie is fairly realistic. Her father and brother want to help but are struggling to understand what happened to their once healthy Sophie. Her mother treats her with open disdain, disappointed that Sophie has failed to fulfill her expectations. You’re never certain exactly what Dr. Mumford thinks about CFIDS, but he never treats her with disrespect or questions that she is truly ill.

One of the most negative aspects of the movie is that it seems to imply CFIDS is mental in origin--it is a psychologist and not a medical doctor who manages to bring Sophie some relief from her symptoms. Dr. Mumford questions her about what key events where happening in her life when she became ill, and implies that it can be "cured" by exercise and talking about what has been bothering her. Unrealistically, after being treated with mild exercise and "talk" therapy, Sophie declares at one point that she feels "100% better."

Dr. Mumford’s notions on treatment of CFIDS should be suspect because he is not really a health professional and winds up going to jail, but not everyone watching the movie will take away that message. It is meant to be a light romantic comedy, so Sophie and all of Dr. Mumford’s other patients, including an obsessive shop-a-holic, an anorexic, and a pornography addict, handily fall in love and get better. The director seems to be saying love can cure anything. But as advocates and persons with CFIDS, we also want this serious illness to be treated with respect.

"Mumford" was released by Touchstone, which is owned by Disney, and was written, produced and directed by Lawrence Kasdan, who also created "The Big Chill." The Association is attempting to contact Kasdan to understand how CFIDS came to be included and continue the education process.