CFS, FM, & such In the Media
TV, Radio, Newpapers, etc.
By Larry Katzenstein
Smithsonian Magazine, December 2002
Also available in full
Laura Hillenbrand beat the odds to write the hit
horse-racing saga while fighting chronic fatigue syndrome, a mysterious
disorder starting to reveal its secrets.
May Take Mystery Out Of Chronic Fatigue Syndrome
Report: Gene Is Linked To Condition
WNBC (New York), December 2, 2002
Until now, doctors have had to rely on patients'
symptoms. But now, according to a report, the Centers for Disease
Control and Prevention has found a gene that is linked to chronic
fatigue syndrome -- and a simple blood test may be available in the
next few years to detect it.
M.E. Stuck Me
By Soraya Madell
The Sun (UK),
December 19, 2002
Speedway ace Gary
Frankum was superfit until he was struck down by the debilitating
illness chronic fatigue syndrome (ME).
Drug May Help Chronic Disease Syndrome
NBC25 (Hagerstown, MD), December
there is no cure and no specific treatment,
there is hope from an experimental drug. . . . It is called Ampligen,
and it is in a Phase Three clinical trial, which means that neither
patients nor doctors know whether they actually got the active drug at
first, although in the second stage of the study, all patients got
Fallout of War
By Richard Leiby
The Washington Post, December 30, 2002
The doctor sits at home, filling the hours with
television, writing himself reminders that look like prescriptions.
"From the desk of Dr. James Stutts," says his notepad, itself a
reminder that he practiced medicine until, one day, he knew it was no
longer safe. He could not remember faces and names. Before he retired,
Lt. Col. Stutts commanded medical staffs on military bases.
He used to helicopter into combat zones to treat the wounded. He still
keeps his Army uniform pressed and ready, as if someday he might return
to duty. He is 54 and disabled by dementia. He is a casualty of the
Persian Gulf War -- one of the tens of thousands of men and women who
left feeling healthy but fell sick after coming home.
as Chemical "Fallout" Lingers from Gulf War I at
Veterans for America
kills theory ME is psychosomatic
By Anne Madden
The Irish News (Belfast, Northern Ireland), November 5, 2002
Up to 6,000 ME sufferers in Northern Ireland, like
round-the-world yachtswoman and author Clare Francis, are now being
recognised as suffering with the debilitating illness.
for the exhausted: DePaul study finding therapies to combat drain of
By Marc Davis
Chicago Tribune, November 17, 2002
Imagine sleeping 16 hours a day and waking up
exhausted. That's how Chicagoan Christina Ditto, 35, felt until
recently. Ditto suffers from chronic fatigue syndrome, a collection of
debilitating symptoms that may include tiring easily, lack of energy,
depression, pain, severe memory problems and difficulty concentrating.
Oddly, insomnia also may be among the symptoms.
Battle for the Weary
By Jerome Burne
The Times (UK) - October 2, 2002
broken out in one of the most volatile areas of medicine —
chronic fatigue syndrome (CFS) or myalgic encephalopathy (ME). For more
than a decade groups of disaffected patients have been challenging
mainstream medical assumptions about the nature of this condition,
which affects nearly 250,000 people in the UK.
Infinite Mind: Chronic Fatigue Syndrome
Hosted by Dr. Fred Goodwin
National Public Radio - October 9, 2002
Guests include author Laura Hillenbrand,
explaining why she had to write part of her bestseller, Seabiscuit,
with her eyes closed; Dr. Nancy Klimas, professor of medicine and
director of the Chronic Fatigue Syndrome research center at the
University of Miami School of Medicine; Dr. Gudrun Lange, a
neuropsychologist at the University of Medicine and Dentistry of New
Jersey; Kim Kenney, president of the Chronic Fatigue and Immune
Dysfunction Syndrome Association of America; and singer-songwriter
Janis Ian, performing a song that she wrote months after her diagnosis
with chronic fatigue syndrome. Plus, Marlene Sanders reports on why
some patients and advocates think the name of this illness should be
changed. Her report includes interviews with filmmaker Kim Snyder,
psychologist Dr. Leonard Jason, and Dr. Anthony Komaroff. And
commentary by John Hockenberry.
audio for The Infinite Mind: Chronic Fatigue Syndrome
Support Makes Illness Tolerable
By Aubin Tyler
Casa Grande Valley
Newspapers, AZ - 11 Oct 2002
The five women are part of an international online
support and chat group "We Are FMily." . . . All five suffer from
fibromyalgia (FM for short), a chronic disorder that leaves its victims
with deep muscle pain, crippling fatigue and often a host of other
of Fibromyalgia Remain a Medical Mystery
The Globe and Mail, Canada - 14 Oct 2002
Anne Bell thrived as a pharmaceutical sales
representative until the devastating effects of fibromyalgia took over
in December of 1991.
disease launches local man's quest for knowledge
21 Oct 2002
It is common for people who suffer from a disease or
disorder -- or who have a child who suffers from that disease or
disorder -- to become knowledgeable about that disease or disorder. But
Douglas Linsday has become more than knowledgeable. In fact, he will be
going to Hilton Head Island, S.C., this week to present a paper at the
International Symposium on the Autonomic Nervous System.
related story "Web Help Sought for Important Research" by DM Lindsay at
SAS.org on 10-10-2003
all odds: Illness made Laura Hillenbrand a long shot to finish the
acclaimed book "Seabiscuit"
By Sally Jacobs
Boston Globe, 24 Oct 2002
It is hard to write a book. It is harder still when
looking down at a piece of paper makes you dizzy, when you are so
persistently tired that just taking a shower requires a three-hour
rest, and when, sometimes, the bookshelf across the room starts to
ripple like an accordion. Somehow, Laura Hillenbrand did it, managing
to overcome a legion of crippling symptoms in order to write not just
any book, but the stupendously successful ''Seabiscuit: An American
Legend,'' which was on the bestseller list for more than a year and is
now being made into a movie.
A Way to Keep Fainting at Bay
By John O'Neil
The New York Times, September 3, 2002
The technique is simple: when the patients felt
lightheadedness approaching, they crossed their legs, putting one ankle
over another in what the researchers called the "cocktail party
stance." They then tensed the muscles in their legs, buttocks and
abdomen, forcing blood out of the legs and toward the brain.
School She's Never Entered
By Jill McLaughlin, Executive
Director, National CFIDS Foundation Inc.
Andover Townsman (Massachusetts), June 6, 2002
Our oldest daughter, Amy, graduated
from Andover High School Monday, yet she has never set foot in the
door. In fact, she has been unable to attend school since fifth grade.
She could not go to her prom and has never attended a school dance,
driven a car or done things that most take for granted as normal parts
of growing up. She has what is known as chronic fatigue syndrome (CFS)
in the US, but has come to include also what has historically been
known as myalgic encephalomyelitis in the rest of the world.
of M Fibromyalgia Study
By JoAnne Purtan
WXYZ Detroit Now, June 7, 2002
Most people who suffer from fibromyalgia have heard
at one time or another that it's all in their head. Well, a University
of Michigan researcher has proof it is in their head, but you can see
it, and it is very real.
Scans Document Fibromyalgia Pain
Reuters Health, June 17, 2002
By Jacqueline Stenson
Brain scans of people with fibromyalgia offer the
first hard evidence of what patients already know: Their pain is real
and their threshold for tolerating it is substantially lower than that
of most individuals.
Schooler's First Day Was Also Her Graduation
By Meredith Warren
Yesterday was Amy McLaughlin's first visit to
Andover High School. She was there to pick up her diploma. Amy, 19, has
not attended school since the fifth grade. Graduating from high school
was a milestone her parents never thought possible for their daughter,
who has been practically bedridden since she was diagnosed with chronic
fatigue syndrome almost seven years ago.
of the Quiet Killer
By Julie Robotham
Sydney Morning Herald (Australia), May 4, 2002
Alison Hunter used to say she had lemonade in her
legs and "shimlers" in her face. Still in primary school when she first
became ill, those were the words she chose to describe the bizarre and
frightening sensations that afflicted her. Vocabulary was still an
issue when Alison died. Despite a decade of crippling physical symptoms
and abnormal pathology and neurology tests, medical science never came
up with anything more tangible than chronic fatigue syndrome (CFS) to
describe her illness.
Link to Fatigue Syndrome
By Julie Robotham
Sydney Morning Herald (Australia), May 4, 2002
An area of the brain that controls the stomach receives substantially
less blood in some people with chronic fatigue syndrome, a study shows.
The finding adds more weight to the argument that the controversial
illness is biological, not psychological.
(The Book) and Author Continue Winning Ways
by Ron Mitchell
Bloodhorse, May 24, 2002
Author Laura Hillenbrand and her best-selling book
"Seabiscuit: An American Legend" continue their winning ways. In recent
weeks, the book: was named "Non-Fiction Book of the Year," by
BookSense, the association of independent booksellers; hit No. 1 on the
New York Times paperback non-fiction bestseller list for May 18; and
was selected as this month's selection by the "USA Today Book Club."
As if that wasn't enough, Hillenbrand, who suffers from chronic fatigue
syndrome, continues to be involved with plans for a motion picture
based on her book, accommodates numerous requests for interviews, and
modeled for a Pond's cream advertisement that appeared in a recent
issue of Vanity Fair magazine.
Fatigue Syndrome Guidelines Spark Media Row
By Melissa Sweet
BMJ 2002;324:1284 (25 May)
By Damien Cave
Salon Magazine, April 4, 2002
After three decades of chronic, searing pain, Marie
Dabrowski was finally able to sleep. She was able to think. And
sometimes, thanks to her new pills, she could almost forget about her
fibromyalgia, a mysterious nerve disorder characterized by fatigue,
migraine headaches and full-body aches. But Dabrowski's respite did not
Award Nominee Honored with Invite to Presidential Speech
SAS E-Bulletin, April 5, 2002
D.M. Lindsay reports that a relative of one of the employees at Mister
Guy may suffer from a problem related to Lindsay's research. He
remarked, "One might be tempted to say 'What are the odds?', but with
one million people nationwide believed to suffer from autonomic
disorders, I bet there are an awful lot of families that know someone
who suffers from a dysautonomia, or chronic fatigue syndrome."
In a March 18 e-mail, Dr. C.J. Mathias, one of the top research
physicians in the field of autonomic nervous system dysfunction from
Imperial College School of Medicine, London, stated to Lindsay, "Please
note that the pretzel induced [loss of consciousness] of President Bush
was a form of neurally-mediated syncope [caused by a temporary
alteration in autonomic tone]. He should therefore have a vested
interest in supporting [medical] research, into autonomic disorders, be
they fixed or intermittent."
and So Very Tired:
of Chronic Fatigue Syndrome Battle
Disabilities and Misunderstanding
By Danylo Hawaleshka
(Canada), April 15, 2002
Ashley Roll's mother is reluctant to have her come
to the phone. She's worried that answering questions will take too much
out of the 19-year-old, but Ashley says she's feeling up to it. Because
of chronic fatigue syndrome, Roll is almost a prisoner of her home in
Burnaby, B.C. She endures numbing fatigue that confines her to a
wheelchair on the rare occasions she gets out. Like some other CFS
patients, Roll developed chemical sensitivities, in her case severe
to the Editor: Lydia Neilson, President, CEO National ME/FM Action
Network and Alison Bested, MD
also Canadian Encyclopdia for CFS
Goes the Distance for Chronic Fatigue Patients
By Harry Hitzeman
Herald (Illinois), April 15, 2002
When Jennifer Dominguez runs 26.2 miles in the 106th
Boston Marathon today, she won't be thinking about achieving a personal
best time. Nor will she be wondering about where she will finish in the
race of 15,000 people. The thoughts of the 30-year-old Wheaton woman
will be squarely on her mother, Lois, who suffers from chronic fatigue
syndrome. Her goals are to finish the race, raise money for research
and increase awareness and empathy for people suffering from the
and Tired Patients in Uproar
By Julie Robotham
Sydney Morning Herald (Australia), April 29, 2002
A row has erupted between doctors and patients over
the diagnosis and treatment of the debilitating illness chronic fatigue
syndrome (CFS). The stand-off concerns new guidelines for doctors that
patient groups say trivialise the condition, blame sufferers for their
illness and promote harmful therapies.
intolerance and chronic fatigue syndrome: New light on an old
By Peter C. Rowe, MD
Journal of Pediatrics, April 2002
Fatigue Syndrome: Evaluation and Treatment
American Family Physician, March 15, 2002
American Academy of Family Physicians
By T. Craig & S. Kakumanu S.
Department of Medicine, Pennsylvania State University College of
CFS has been the subject of intense investigation, but its etiology and
clinical course remain unknown. As the search for more effective
treatment and, hopefully, a cure continues, future researchers may be
drawn toward a holistic approach to CFS, specifically as an interaction
among neural, endocrine, and immune systems.
By Jerome Burne
Guardian (UK), March 30, 2002
For ME sufferers, the bitter feud between the
scientists as to whether it is a genuine physical complaint, or more a
disease of the mind, has only added to the dispiriting nature of their
ailment. After all, if even the experts don't know what's wrong with
them, what hope is there? Jerome Burne meets the warring parties - and
finds that, at last, they're discovering some common ground.
Proudly Waves the Flag
By Lenn Robbins
New York Post,
February 8, 2002
The chronic fatigue syndrome that so often has made
her training and speedskating agonizing will be the farthest thing from
Amy Peterson's mind tonight.
of Amy Peterson's appearance on NBC's Today Show on February 7, 2002,
in which she talks about her honor and her experience with CFS. The
CFIDS Association website also has a transcript
of the interview.
Skating: Five-time Olympian Prevails Against Illness
By Paul Newberry
Associated Press, February 16, 2002
"I didn't expect it to hit me as hard as
it did this season," she said. "I thought I had it under control, then
it kind of knocked me back down again. It's a struggle every day to get
through it." Other American athletes were well aware of that struggle,
which is why they picked Peterson to carry the U.S. flag in the opening
But Not Heard
By Kate Foster
The Scotsman (UK), February 20, 2002
In the upstairs bedroom of a house in Glasgow, the
windows are covered with black-out curtains. It is a typical
teenager’s bedroom, but there is no sound, no television or
radio. The light is permanently switched off. This is Heather
McLean’s room, and it is where she has spent the last few
years of her childhood. Unable to sit up for longer than half an hour,
she is unable to bear the pain of having her hair brushed or her teeth
cleaned. The slightest chink of light hurts her eyes. Even the sounds
of everyday life outside make her tremble. Heather, 15, from Shawlands,
suffers from severe Myalgic Encephalomyelitis (ME) - chronic fatigue
Becomes Fifth Woman to Win Big Sport of Turfdom
By Tom Law
Times, February 18, 2002
has spent nearly her entire life as a self-described horse lover, and
on Monday in Miami Beach, Florida, she was honored by the Turf
Publicists of America for her contributions to the sport of
Thoroughbred racing with the 36th annual "Big Sport of Turfdom" award.
Hillenbrand, who can barely leave her Washington D. C. home due to
chronic fatigue syndrome and was unable to attend the luncheon, became
just the fifth woman to win the Big Sport of Turfdom award. The honor
is one of many bestowed on the author of the New York Times
best-selling book "Seabiscuit: An American Legend."
Helps Sufferers Deal With a Disorder That No One Understands
By Wendy Bigham
Herald (South Carolina), February 18, 2002
Maggie Heath has fibromyalgia, a chronic pain
syndrome. In between trips to doctors in a Medicaid van, her
apartment's living room is where Heath spends many of her afternoons.
... The 59-year-old woman meets monthly with about 15 other women at a
Rock Hill fibromyalgia support group. Together, they hope to find out
what they can do to make their lives easier, coping with an illness
that, for now, has no cure.
Woman Eases Own Pain by Helping Others Cope
By Shane Samuels
The Chetek Alert (Wisconsin), January 9, 2002
Bignell established her Fibro Friends program in
1999 to help other sufferers of fibromyalgia cope with the complexities
of the disease.
Treatment 'Must Improve'
BBC News (UK), January 11, 2002
A report compiled for the Chief Medical Officer for
England, Professor Sir Liam Donaldson, says the "yuppie flu" perception
had been "completely debunked". He said CFS/ME should be classed as a
chronic condition with long term effects on health, alongside other
illnesses such as multiple sclerosis and motor neurone disease.
Recognised as Chronic Condition
By Sarah Boseley
The Guardian (UK), January 12, 2002
"This has been a disease in the wilderness," said
the government's chief medical officer, Sir Liam Donaldson, yesterday
on the publication of the report commissioned by his predecessor, Sir
Kenneth Calman, three years ago. "Sufferers have often been ignored,
not always taken seriously, labelled sometimes as hypochondriacs and
urged to get better on their own. From today all that changes. This is
a real condition, affecting real people. We need to move forward. There
are still things unknown about it, but we have a real basis for action."
Younger ME Generation
By Julia Stuart
The Independent (UK), January 16, 2002
Frances Goodchild hasn't seen her friends for 18
months. While they are at school or playing, the 10-year-old spends her
time in bed with the curtains drawn. On a good day, she'll swallow a
bit of boiled potato. It requires such an effort that she sounds as
though she's choking to death. She can't sit up, and the hum from the
fridge downstairs disturbs her. Her parents can't hug her, because it
hurts. Frances is one of an estimated 25,000 children in the UK who
suffer from ME.