November - December
Akers Wheaties box hits
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
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
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
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
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
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.
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
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 movieís 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 parentsí home because she canít 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 CDCís web site. The camera zooms in and stays focused on the text as he carefully reviews
the case definitionís 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. Youíre 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."
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. Mumfordís 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