Friday, June 3, 2011

Another Llewellyn King article on CFS

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
titled  RealClearScience.

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

By 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
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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at June 02, 2011 - 07:16:06 PM EDT

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