CFS, FM, & such 'In the Media, In the News'
TV, Radio, Newpapers, etc.
(Links updated 2/07)
November - December
- Nov 6, 2003
Examines the controversy over complementary and
alternative medical treatments. Includes discussion and links, and the
full television program is viewable online.
By January W. Payne
The Washington Post
- Nov 11, 2003
She doesn't look disabled. Some doctors believe her
condition isn't real. But for the author, fibromyalgia makes every day
- The Infinite Mind:
How We Think
Hosted by Dr. Fred Goodwin
National Public Radio - Nov
We can learn a lot about "how we think" by studying people with brain
injuries. Next, The Infinite Mind's Marit Haahr speaks with writer and
poet Floyd Skloot, who has unique perspective on this. He has suffered
brain damage, caused by an undetermined virus that targeted his brain,
but he clearly remembers his old way of thinking. He has written a book
called In the Shadow of Memory, about the damage done to his brain and
the process of rebuilding his life.
Order audio for The Infinite Mind: How We Think
- Woman of
the Year - Laura Hillenbrand
battler in line for top accolade
Post, UK - Oct 2, 2003
Chronic fatigue syndrome sufferer Miriam Potter has
been short-listed for a prestigious learning award after fighting the
debilitating illness ...
not always so obvious
Myrtle Beach Sun
News, SC - Oct 3, 2003
When Whitney Anders was a junior in high school, she
was diagnosed with a painful disorder called fibromyalgia syndrome ...
Takes Different Tolls on Different People
Constitution, GA - Oct 8, 2003
Fibromyalgia patients, who suffer pain in the
muscles, joints, ligaments and tendons, are not all the same and can be
classified into ...
Therapies For Fibromyalgia
WFIE-TV, IN - Oct
Now, newer more targeted therapies may soon be
available. For more than 20 years, Elizabeth Tross-Deamer suffered the
pain of Fibromyalgia. ...
not equal for all
News24, South Africa - Oct
Fibromyalgia patients, who suffer pain in the
muscles, joints, ligaments and tendons, are not all the same and can be
classified into three distinct subgroups ...
Alert: Fibromyalgia treatments
WIS, SC - Oct
Fibromyalgia is a chronic pain syndrome that affects
mostly women of childbearing age. There are no specific ...
author's story worth knowing
GoErie, PA -
Oct 28, 2003
The story of Seabiscuit is wonderfully told in Laura
Hillenbrand's best seller, but for my money, the story of the author's
struggle with chronic fatigue syndrome is scads more dramatic.
resilience shines on, off the field at Woodbury
Cherry Hill Courier
Post, NJ - Oct 29, 2003
Really, it is unfathomable how Lindsey Hamburg still
plays field hockey while suffering from what is believed to be
fibromyalgia - a chronic condition that ...
women defy odds for us all
Tribune, UT - Sept 1, 2003
The YWCA is presenting Jan Tyler, a 24-year Utah
educator, its award for education. ... Tyler's award isn't just for her
work within organized education. The YWCA also cites Tyler for her
education and support efforts involving chronic fatigue syndrome and
fibromyalgia, ailments she has been diagnosed with having. "Every week,
I spend hours on the phone talking with people who are just trying to
manage," Tyler said. "I'm just being whatever support I can be."
Questions for Laura Hillenbrand
New York Times, NY
- Sept 3, 2003
It has not been a good three years health wise, but
I'm not sure I would say that it was too big a price to pay. The book
was a blissful escape for me, giving me the chance to walk around in
the lives of three fascinating, vigorous men who lived a life of motion
-- a life opposite to my own. And though I have sacrificed my health
for this project, in a way I feel that the book has given me a way to
triumph over my disease, because I was able to achieve something in
spite of it. Finally, it has given me a platform from which to be an
advocate for the 800,000 people in this country who suffer from chronic
fatigue syndrome, a greatly misunderstood and very serious disease.
Chronic Fatigue Syndrome
USA - September 2003
Chronic Fatigue Syndrome is a debilitating and complex disorder
characterized by profound fatigue that is not improved by bed rest and
that may be worsened by physical or mental activity.
They Were Thinking: Julianna Martin
New York Times Magazine, NY
- Sept 7, 2003
I don't shop without my respirator on. I've got
extreme hypersensitivity to everyday chemicals -- fragrance, perfume,
shampoo, candles, cleaning products. It's hard to do anything. Living
with multiple chemical sensitivity has changed the way I see freedom.
of being misunderstood: Chronic fatigue sufferers hope for boost in
Boston Herald, MA
- Sept 7, 2003
This summer the disease finally reached the public
spotlight when the author of "Seabiscuit" revealed she had struggled
with CFIDS for 16 years. "With the coverage of Laura Hillenbrand, it's
been like night and day," said Boston author Rivka Solomon, 40. "As
soon as the movie came out and she was on `20/20,' `World News Tonight'
and wrote that New Yorker article, I received a number of calls from
people who had this incredible level of understanding and compassion
that I hadn't experienced in my 13 years with this illness."
Chronic Fatigue - Full-Length Doctor's Interview
Ivanhoe Broadcast News, FL - Sept 8, 2003
In this full-length doctor's interview, Barry Hurwitz, Ph.D., explains
how a drug typically used in cancer patients may help people with
chronic fatigue syndrome.
woman hopes to use struggle with fatigue to help others
Herald, NY - Sept 14, 2003
After suffering from undiagnosed chronic fatigue
syndrome for about 10 years, Wanda Cousins of Olean is slowly getting
her life back. ...
Buddhism Good for Your Health?
New York Times Magazine, NY - Sept
Kabat-Zinn is conducting a study for Cigna
HealthCare to see if meditation reduces the costs of treating patients
with chronic fatigue syndrome, fibromyalgia ...
illness robs me of sleep
Evening Post, UK - Sept 17, 2003
To look at Akita Farrell, you would never know she
was ill. But, at the age of 30, she has an incurable disease that has
robbed her of her job and her zest for life. For two years, Akita has
suffered from fibromyalgia, a chronic syndrome similar to ME, which
causes a head-to-toe aching and debilitating fatigue.
Brandenton Herald, FL -
Sept 20, 2003
The symptoms started unexpectedly. Ken Sortore
couldn't remember numbers or prices while ringing up a customer and
rewrote a sales slip four times before he got it right.
- August Selections on the Seabiscuit
Movie, Laura Hillenbrand, & CFS
is an uplifting ride Washington
Times, DC - Aug
author puts a face on chronic fatigue syndrome USA Today - Aug 4, 2003
by a furlong San Diego Union
Tribune, CA - Aug
Hillenbrand is exhausted The
Saratogian, NY - Aug
… It's not cool to be an underdog Tallahassee Democrat - Aug
Laura Hillenbrand scores with Seabiscuit People Magazine - dated Aug 11, 2003
'Seabiscuit' goes further than film version Times
Daily, AL - Aug 29, 2003
- Amy Tan, Ticked Off About Lyme
Washington Post - Aug 5, 2003
The novelist, under treatment for
late-stage Lyme Disease, could never have conceived how hard it would
be to get a diagnosis -- or how surreal the symptoms could be.
- News of treatment for fibromyalgia
Star-Bulletin, HI - Aug
California endocrinologist R. Paul St.
Amand developed a protocol using guaifenesin to treat fibromyalgia, and
Kaipaka had invited him to Kauai to talk about it.
the grain: The growing awareness of celiac sprue
American Medical News - Aug 10, 2003
Now, Dr. Fasano co-directs the University of
Maryland's Center for Celiac Research and focuses on spreading a
different truth among primary care physicians. Celiac disease actually
is one of the most common lifelong disorders in the United States --
American doctors just had not been trained to look for it. The
wide-ranging symptoms of the disease can disguise the intestinal
disorder, but new tests are helping to make diagnosis easier. The
illness is triggered in genetically susceptible people by
May Link Sinus Problems, Chronic Fatigue
NBC4.com, DC - Aug
Doctors in the D.C. area are taking part in a study
that may link chronic fatigue syndrome to sinusitis. More than 800,000
people nationwide suffer from chronic fatigue syndrome. Patients
usually complain of being extremely tired and achy and many suffer from
headaches. However, nobody knows why. Dr. Alexander Chester, an
internist with Georgetown University, is taking part in a study that
looks at the association between chronic fatigue and the inflammation
of the sinuses.
of Rhinosinusitis in Patients With Unexplained Chronic Fatigue or
Bodily Pain - A Pilot Study - Alexander C. Chester, MD: Arch Intern
Med. 2003; 163:1832-1836.
helping with chronic fatigue syndrome study by the CDC
Eagle, KS - Aug
Already, the CDC team
has found that chronic fatigue syndrome affects 235 of every 100,000
people in the Wichita area, that it affects more women than men, and
that white women between ages 50 and 59 are the most likely to be
affected. Those findings were reported in the July 14 issue of the
Archives of Internal Medicine.
Intern Med. 2003;163:1530-1536
MSNBC - Aug
If you are one of the 4
million Americans suffering from the chronic pain of fibromyalgia, see
what researcher and WebMD message board expert Kim Jones, Ph.D., RN,
FNP, had to say. She joined us to answer your questions and share the
latest treatment information about this debilitating disorder.
The Observer Magazine, UK
- Aug 17, 2003
I have suffered from a dreadful fatigue for five
years. Not a dozy tiredness
which disappears after a good night's rest, but an overwhelming,
exhaustion which fogs up my brain and totally saps my energy. And to
matters worse, I can't sleep. There are about a quarter of a million
the UK with the same symptoms as me, but my doctors say I'm a medical
a medical mystery: When you know something's terribly wrong ...
Fort Wayne News
Sentinel, IN - Aug 21, 2003
According to a 1999 study, 90 percent of people with
chronic fatigue syndrome - which is three times more common in women
than men - are not diagnosed or receiving treatment. Even with a
diagnosis, Rivers said, it was hard to get treated as "a whole person"
rather than just a collection of symptoms.
Disease misdiagnosed, misunderstood, 'mis-insured'
Hillsboro Argus, OR - Aug
Lyme can be difficult to diagnose, with currently
available lab tests not always reliable. It sometimes manifests
symptoms that mimic fibromyalgia, multiple sclerosis and even mental
illness. This can also lead to misdiagnosis and mistreatment of other
diseases being mistakenly treated as Lyme.
finds support in fibromyalgia group
Times Picayune, LA - Aug
For Sandra Foudriat, the St. Bernard Fibromyalgia
Support group has become a constant source of encouragement. "We are
always saying 'Don't quit' to each other," said Foudriat, a Violet
resident and a member of the board of directors. "We encourage each
other to keep going."
a light on medically unexplained symptoms
Times, PA - Aug 24, 2003
Amy, the New Jersey patient, said she was frustrated
by doctors' inability to explain her sickness or offer help. It left
her feeling isolated and hopeless. "It's good when they can't find
anything, but you almost wish they'd find something so you could do
something," she said..
devaluing of a chronic illness
Boston Globe, MA - Aug
The misleading name "chronic fatigue syndrome"
itself has greatly contributed to the stigma and controversy
Sam keeps her dream alive
Observer, UK - Aug 26, 2003
MOST children would love to go to school for just half-a-day each week. Samantha, aged 16, who suffers from ME –
chronic fatigue syndrome – managed to get three A's and a C
despite the debilitating illness.
copes with chronic fatigue syndrome
Gazette, MA - Aug 26, 2003
Though it most commonly strikes adults between the
ages of 20 and 40, children and teenagers can also get CFS. It is also
often known as CFIDS, or chronic fatigue and immune deficiency
syndrome. For children and teens, the disease raises certain problems
adults are spared. For openers, they may be too sick to attend school
and so relationships with friends can suffer. The judgment of peers can
be harsh. "She wants to be a teenager," says Bellerive's mother.
Billings Gazette, MT - Aug
"People don't die of chronic fatigue syndrome," he
said. "For the first year or so, you really feel like you are dying,"
said Lorrie Rivers of Columbia.
Alert: Procrit for Chronic Fatigue Syndrome
WIS News 10, SC - Aug
Dr. Hurwitz and his colleagues are studying the drug
Procrit to help patients like Toni. The drug is typically used in
cancer patients, but in CFS patients Procrit raises red blood cell
volume by triggering a hormone in the kidneys, "Some people have shown
remarkable improvement and have gone back to work, and in others it's
been less effective."
long, painful journey What really bites are the words: ' ...
Hillsboro Argus, OR - Aug
This is the first of a two-part story about a local
girl's harrowing journey into pain and suffering caused by an unwanted
antagonist -- Lyme Disease. -- who fooled doctors for nearly 10 years.
HealthCentral.com - Aug
SEATTLE (Ivanhoe Newswire) -- For more than 20
years, Elizabeth Tross-Deamer suffered the pain of fibromyalgia. She
started taking a new medication -- pregabalin -- and her pain subsided.
"The memory is better. My relationships are better," she says. "People
like me a lot more." For the first time in years, this wine author can
sleep at night, giving her back energy and stamina during the day.
Bernadine Smith took a different drug -- milnacipran -- and had similar
results. She says: "I didn't have as much depression. I wasn't as
in Houston: Lyme disease
News 24 Houston, TX - Aug
Jean Daniels has lyme disease, and now it's
affecting her memory. For years, her symptoms of joint inflammation
and, what she calls "brain pain", were misdiagnosed.
drugs on the way for fibromyalgia
News 8 Austin, TX - Aug
Two drugs that may relieve the symptoms of
fibromyalgia are expected to enter Phase 3 clinical trials this year.
Patients treated with pregabalin and milnacipran in early trials
reported significant improvements in pain and fatigue.
disabled kids connect online
San Jose Mercury
News, CA - Aug 30, 2003
16, missed her high school prom and instead spent the evening at home,
in bed, because she suffers from chronic fatigue syndrome.
She wrote on an
Internet message board the next day: ``I want to dance, to laugh, to
sing. Proms never come around again.'' But Elle's prom did come
around again -- also on the Internet -- thanks to PatchWorx, a Menlo
Park-based online community for sick and disabled children.
Diane Rehm Show: Laura Hillenbrand
WAMU, Washington DC
July 3, 2003
This edition of WAMU's national broadcast of The
Diane Rehm Show featured best-selling author Laura Hillenbrand. Laura
and Diane talked about Laura's 16-year battle with CFS, which she has
chronicled in devastating detail in the July 7 edition of of The New
Yorker magazine. Laura's physician, Dr. Alan Pocinki, and CFIDS
Association of America president Kim Kenney also joined the
> To Listen (Real Audio online stream): Broadcast
> Order cassette of July 2003 Diane Rehm Show with L. Hillenbrand
Sudden Illness: How My Life Changed
By Laura Hillenbrand
The New Yorker, dated July 7, 2003
An essay written by Laura Hillenbrand, best-selling
author of "Seabiscuit: An American Legend." The piece offers a personal
and detailed account of Laura's 16-year battle with CFIDS and the
devastating impact it has had on her life.
PDF format (2.44MB file): click
By Bob Brown
ABC News 20/20, July 18, 2003
After growing up athletic and competitive,
Hillenbrand was struck by a crippling condition known as chronic
fatigue syndrome. As she wrote her book, she was often bedridden and
sometimes unable to feed or bathe herself — fighting swollen
lymph nodes, night sweats, fevers, nausea and vertigo.
- CNNfn Program on
The Flip Side, CNNfn, July 28, 2003
The CNNfn program “The Flip
Side” interviewed CFIDS Association President documentary
filmmaker and person with CFIDS Kim Snyder.
> To view (Windows Media Player online stream): Broadcast
Air: Laura Hillenbrand
Fresh Air with Terry Gross
National Public Radio, July 29, 2003
She is the author of the best-selling book,
Seabiscuit: An American Legend, about the horse who became a racetrack
sensation in the 1930s. Her book is the basis of the new film starring
Tobey Maguire, Jeff Bridges and Chris Cooper. The New York Times called
the book, "a captivating story... with the detail of good history, the
blistering pace of Seabiscuit himself, and the charm of grand legend."
Hillenbrand has chronic fatigue syndrome and during the writing of
Seabiscuit, she almost never left her home. She has been writing about
thoroughbred racing for 15 years.
Listen (Real Audio online stream): Broadcast
- More July
Selections on the Seabiscuit Movie, Laura Hillenbrand, & CFS
- the book website Laura Hillenbrand - 2000
- Seabiscuit -
- the movie website Universal Pictures - 2003
big on the dark horse The Oregonian - July 6, 2003
of 'Seabiscuit' endures rough ride The Washington
Times - July 10, 2003
down the red carpet Lexington Herald-Leader - July
ride of her life Baltimore Sun - July 20, 2003
a metaphor for Hillenbrand's life
labor of love Boston Herald - July 20, 2003
Long Shot Washington Post - July 22, 2003
That You Can Be Village Voice - July 22, 2003
creates bond where men face frailties Baltimore Sun - July
author an inspiration Chicago Sun-Times - July 24,
Author Hillenbrand Honored Zap2it - July 24, 2003
of Best-Selling 'Seabiscuit' to Be Honored
July 24, 2003
a horse shall lead them CNN - July 24, 2003
Sun - July 25, 2003
author rode her own rough races Reuters - July 25, 2003
about ultimate underdog ... Houston Chronicle - July 25,
slows, can't stop 'Seabiscuit' author Fort Wayne Jrnl Gazette
- July 25, 2003
quiet tenacity can speak volumes San Jose Mercury News - July
battled chronic fatigue to pen a best seller Newsweek
- July 28, 2003
'Seabiscuit,' A Winning Week In Washington Washington Post - July
gripping movie, a universal theme Cleveland Plain Dealer - July
Illness Is Nonfiction Washington Post - July
- The Horse's Tale: Laura
Hillenbrand Wrote the Book on 'Seabiscuit'
Washington Post - July
Author Has a Story Of Her Own
By William Gildea
Washington Post, Sunday, June 22, 2003; Page E03
Next month will bring to theaters the
film based on the best-selling book "Seabiscuit: An American Legend,"
written by Laura Hillenbrand in a second-floor room of a rented row
house in Glover Park. She wrote it despite a severe case of chronic
fatigue syndrome that has plagued her for 16 years -- at times severe
enough that she could not roll over in bed, leaving us to wonder how
the name given the illness can be so badly understated.
- International Awareness Day
Annie's Mailbox by Kathy Mitchell and Marcy Sugar
Nationally Syndicated Column, May 12, 2003
Studies have shown that CFS is among the most severe
of all medical diseases. Aside from crippling fatigue and muscle
weakness, sufferers report short-and long-term memory loss, abnormally
low blood pressure and in rare cases, ataxia (impaired coordination).
Not All in Your Head
By Anne Underwood
Newsweek, May 19, 2003
(for photo of original article, click
Matallana, 48, of Orange, Calif., went to 37 doctors over the course of
one year before she received a diagnosis of fibromyalgia—a
condition involving pain throughout the body, heightened sensitivity to
touch, and fatigue. And she thinks of herself as one of the lucky ones.
“Patients used to go for decades without diagnosis or
treatment,” says Matallana, who went on to found the National
Fibromyalgia Association in 1997.
Fatigue Syndrome And Fibromyalgia
News4 Your Health
nbc4 (Washington, DC), May 15, 2003
Chronic fatigue syndrome and fibromyalgia are linked
by their symptoms - muscle pain and memory problems - but also by the
mystery and controversy that surround them. For the more than 6 million
Americans diagnosed, treatment is anything but perfect. In fact, it's
often just trial and error. Now some who battle these symptoms are
turning to brain surgeons. . . . Ellenbogen is
studying the prevalence of Chiari Malformation in patients diagnosed
with those conditions to help clarify who should and should not have
surgery. "I've seen patients who have not only not gotten better but
have gotten worse, and I'm curious as to why they were operated on in
the first place," said Ellenbogen.
Fatigue Syndrome in Young People and Children
The Health Report - Radio National/ABC (Australia), April 14, 2003
Peter Rowe, MD, Professor of Pediatrics at Johns
Hopkins University in Baltimore, studied a group of young people and
children who are affected by Chronic Fatigue Syndrome and has come up
with some fascinating findings which at the moment defy explanation. Among the topics discussed are low blood pressure,
tilt table tests, joint hypermobility/flexibility, Ehlers-Danlos
syndrome, fibromyalgia, manual physical therapy, medications, anxiety
and panic, migraines and allergies.
into Hearts and History
By Kathy Blumenstock
Sunday, April 20, 2003
Writing "Seabiscuit: An American Legend" changed her
life "in every way imaginable. It gave my life purpose as I struggled
with a devastating illness, chronic fatigue syndrome." Hillenbrand has
had CFS for 16 years. For the four years she spent on the book, she
said, "I lived in the horse and the men around him. They were my
Triumph of the Underhorse
By Jennifer Frey
Monday, April 21, 2003
Laura Hillenbrand has bought the Glover Park
rowhouse next door to the one where she once holed up in a tiny office,
eight hours a day, writing her best-selling book "Seabiscuit: An
American Legend." She gets a lot of invitations now, not that her
illness -- she suffers from chronic fatigue syndrome -- allows her to
accept many. And she's done maybe 250 interviews since the book came
out in 2001.
to the Max - And Then Some
Chronic fatigue syndrome may get new name to reflect the scope of the
By Linda Searing
HealthScoutNews, March 16, 2003
We all know what it's like to have a really bad case
of the flu. Think, then, what it also must feel like to have severe
muscle and joint pain, headaches and sore lymph nodes. On top of that,
you can't concentrate, and you're tired, really tired, most of the time
-- a sense of exhaustion that just won't go away, no matter how long
you sleep. Some half a million Americans don't have to imagine it. They
feel that way day after day, year after year.
Search of a Gulf War With No Gulf War Illness
By Gina Kolata
The New York Times, March 25, 2003
Officials at the Department of Veterans Affairs and
the Defense Department say they learned valuable lessons from their
attempts to grapple with the mysterious illnesses - known collectively
as gulf war syndrome - that plagued some veterans of the last gulf war.
This time, they are coordinating their efforts in an effort to
forestall another outbreak of symptoms or, if one does emerge, to
pain is real, but is fibromyalgia a condition? Depends who you ask
The Kansas City
Star, Mar. 31, 2003
Dan Clauw is a physician who does think "outside the
box." A medical researcher at the University of Michigan School of
Medicine, he's been studying the persistent all-over pain that is at
the core of the baffling diagnosis of fibromyalgia. His conclusion:
It's true what the fibromyalgia patients have been saying for years.
They really do hurt all over.
The Latest News
How to find
relief from the pain that won’t go away
Woman's Day, February 1, 2003
Twenty years ago, Julie Lydon of Norwood,
Massachusetts, started to experience lower back pain. Soon she
couldn’t stand up straight, and her muscles stiffened when
she sat for too long. Her body throbbed, and she was tired all the
time. Doctors ran a battery of tests, looking for cancer, leukemia,
anything. Finally, after 15 long years, Julie had a diagnosis:
fibromyalgia. This chronic disorder, marked by unending pain and
fatigue, affects up to 10 million Americans, the majority of whom are
women. But many patients have a hard time getting diagnosed since the
exact causes of fibromyalgia are unclear, there is no blood test
available and symptoms can vary widely. As scientists continue to study
this mysterious ailment, promising discoveries are being made to help
patients with fibromyalgia better understand and manage their condition.
for Chronic Fatigue Sufferers
CBS News - The Saturday Early Show, February 1, 2003
The Ampligen study should be completed in about a year and a half. Then
it will have to go through the FDA’s approval process,
something many CFS sufferers hope will be speedy.
for the Mystery Pain of Fibromyalgia is in Sight
By Linda Marsa
The Seattle Times, February 16, 2003
Conventional analgesics, such as Tylenol, Motrin or
even morphine, provide little relief to sufferers of fibromyalgia, a
mysterious and debilitating pain disorder for which there is no
effective treatment. But a new drug may be able to thwart the nerve
signals that scientists now believe trigger the pain. "This is a real
breakthrough not only because it works, but it proves fibromyalgia can
be treated," says Dr. Leslie Crofford, a rheumatologist at the
University of Michigan in Ann Arbor who has studied the new drug,
Acts to Avert Gulf War Malady [Reprinted at CPEO.org]
By David Brown
Washington Post, January 21, 2003; Page A01
As it lays the groundwork for another war with Iraq,
the U.S military is engaged in a massive effort to prevent the
reappearance of Gulf War syndrome. Over the decade that followed the
1991 Persian Gulf conflict, the chronic illnesses that tens of
thousands of veterans described ultimately marred the U.S. victory. The
agonizing investigation of what came to be known as Gulf War syndrome
eroded trust in the military, cost hundreds of millions of dollars and
consumed thousands of years of human labor.
- Is A
Fragrance Free Workplace Right for You?
KATU TV, January 30, 2003
Many people have had a co-worker at one point that wore so much cologne
or perfume that it was practically unbearable. The solution may be
right around the corner: a fragrance free workplace. The fragrance free
policy is cropping up in public buildings and in the
next few years it may start hitting the private sector.