I'm told today is a CFS Bloggerama Day -- here's a good article for my fellow bloggers to build a post around
Llewellyn King has written a sympathetic article re ME/"CFS" and its
sufferers that appears in today's Washington DC political blog
RealClearPolitics. Appropriately enough it appears in the section
This could be a great piece to use for educating political
representatives and other powers-that-be, giving a much clearer idea
of the destruction the disease wreaks on individual lives than news
media can usually find room for. I'm [Deb] embarrassed to say I'm one of
the female writers he features as examples, but then again it was
seeing how completely the disease had stripped the life out of me
that helped him to understand the larger story.
Link appears above. Article below.
to the Article
June 2, 2011
Chronic Fatigue Syndrome is Misunderstood
http://www.realclearsports.com/authors/?author=Llewellyn+King&id=22449 Llewellyn King
What's in a name? A great deal, if you suffer from awful, long-term
diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients,
who number perhaps 1 million to 4 million in the United States and 17
million worldwide. It also frustrates the small but dedicated cadre
of doctors and researchers who have made the disease and its
casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in
1988, although the term myalgic encephalomyelitis (ME) is still in
use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because "it trivializes the
disease and misleads people," in the words of Leonard Jason,
professor of psychology at DePaul University in Chicago. Certainly it
brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being
under-researched in the process.
Two years ago, the journal Science published the results of joint
research by three teams of investigators pointing to the retrovirus
XMRV as a likely culprit. But in a disappointing setback to CFS
sufferers, the journal published two online articles Tuesday
away from this conclusion. Although disheartening to the CFS
community, this does not put everything back to square one. The most
current thinking is that although CFS may be caused by a combination
of factors, including genetic predisposition, the most likely trigger
is one or more pathogens and the immune system's hyper-response to
"The immune system pours out its toxins to stop this agent," Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. "And then the immune system doesn't calm down."
Although it has been around for centuries, and variously labeled,
modern concern with the disease dates to a major outbreak at London's
Royal Free Hospital in 1955. That outbreak was big enough -- nearly
300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was
contagious. Then, as now, there was no real treatment and no clue as
to the path of the potential contagion: Was it airborne or foodborne?
How about contaminated surfaces? Were bodily fluids involved? Was
there a genetic link?
None of those questions have been answered. What is known is that the
disease can appear in clusters, but it is more often found in
isolated cases. It has spread in families, making it frightening; but
the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was
in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At
over 300 cases, it proved too big to ignore, finally attracting
attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak,
Gary Holmes and Jon Kaplan. They estimated the number of sufferers at
perhaps 20,000 throughout the United States, a majority of whom were
women. The same year, a second outbreak occurred in Lyndonville, a
farming and manufacturing village in the northwest corner of New York
state, with 216 cases out of a population of 900. Lyndonville only
had one doctor, David Bell. He has followed the disease's progress
tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting
distinguished researchers in its wake. In 1987, Harvard Medical
School professor Anthony Komaroff published a report about
increasingly significant numbers in his Boston practice. Dr. Nancy
Klimas, an immunologist and AIDS expert at the University of Miami,
found her clinic flooded with sufferers from the new disease and soon
found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one
yet realized the extent.
Then entered Jason and his team of researchers at DePaul University.
They studied the disease in society from a psychological point of
view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was
not psychological in nature, and that the cure rate was extremely
low. Additionally, they and other researchers found that one of the
prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received
since first covering the disease, sufferers are hit first with
symptoms of what seems to be flu. Sometimes there is a short,
deceptive remission -- sometimes two or three. Then the pattern
emerges of collapse after every exertion, especially exercise.
Finally, full onset occurs: There are no more normal days, only
different degrees of weakness, pain and other symptoms. Doctors term
the disease relapsing and remitting. That means you might have weeks,
months or years of slightly better days, and then stretches -- often
years, sometimes decades -- of almost total helplessness. It is
goodbye to the life you have known; goodbye to work, to hobbies, to
lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is
typical in the devastation of her life. Before, Waroff was a skier, a
sailor, a passionate squash and tennis player. Now the aloneness of
the disease weighs her down. Very old friends -- some from her days
at Harvard, a few from childhood, a handful from work -- sustain her
with telephone calls, when she can answer the phone, and some drop
by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement
calendar grew full of forlorn cancellations for dinners, parties and
meetings. One day in 1991, a bad headache arrived that lasted three
days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff
began to find medications and methods that would allow her to work a
few hours a day. Pushing herself with sheer willpower to complete a
chore would exaggerate her symptoms -- more mixed-up speech,
stumbles, near-falls, dizziness, rising fevers. Afterward, she would
be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to
fill out a simple form -- just to renew library books -- and fax it.
That was the beginning of month after month of near-death incapacity.
"I was as weak as you can imagine. I lay on the couch, its high back
and sides making me think how much this was like being in a coffin,
inert, my consciousness flattened by illness. I was too weak to read
and often too weak to watch television. I would turn my back to the
screen and let the sound wash over me, not taking it in."
CFS, like AIDS, suppresses the immune system. Typical symptoms
include tremendous fatigue that is unrelieved by sleep, as well as
flare-ups of herpes- family diseases (such as HHV-6 and
Epstein-Barr). Other typical symptoms include swelling of the lymph
nodes, muscle aches and other pain, dysphasia (the inability to use
the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was
felled by CFS. Unable to leave her bed for more than a year, she
filled her days by watching a single snail in a terrarium make its
fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail
through the wonderful work of the 19th-century naturalists -- that
special breed of romantics who studied by watching, rather than by
dissecting in the lab. The result is the sweet, well-reviewed book,
The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great
adversity to be productive, is Laura Hillenbrand who has over time
written two incontrovertible bestsellers, Seabiscuit: An American
Legend and Unbroken: A World War II Story of Survival.
Hillenbrand's achievement is Herculean. She seldom is able to leave
her home in Washington, D.C. In a recent interview, she told the
story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I
have heard from a lot of men, including a medical doctor and a young
man, who was thrown out by his father who accused him of malingering.
His plight is terrible, as is the plight of other people who do not
have the intellectual capital or financial resources to do anything
but suffer in isolation. Insurance companies drop coverage routinely,
and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does
not occur within the first two years, it is unlikely to occur at all.
Usually only the young and well-supported socially are able to regain
a good part of the health they once had. The beacon of hope in this
wasteland of human wreckage is a private institute in Reno, Nev.
Affiliated with the University of Nevada, it is called The Whittemore
Peterson Institute for Neuro-Immune Disease (WPI). It was founded and
funded by Harvey Whittemore and his wife, Annette. Their 33-year-old
daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned
down all six research grant applications it made last year. But at
least 1 million very sick Americans are cheering for this frontal
attack on CFS, which they prefer to call ME/CFS in deference to the
older, less trivializing name.
While these things are argued, the life in limbo that so many endure
is described by Waroff this way: "You know the trouble with this
disease? All this time goes by with nothing in it. You don't get a
chance to put anything in it. It's just empty time."
Llewellyn King is executive producer and host of "White House
Chronicle" on PBS. His e-mail is
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