Chronic Fatigue Syndrome is Misunderstood

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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 =93it trivializes the

disease and misleads people,=94 in the words of Leonard , professor

of psychology at De University in Chicago. Certainly it brings to

mind chronic whiners and everyone's everyday fatigue.

Part of the misleading, 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. 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 backing

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=92s hyper-response to

infection.

=93The immune system pours out its toxins to stop this agent,=94 Dr. Jay

Levy, a University of California professor who co-authored the new

studies told The New York Times. =93And then the immune system doesn=92t

calm down.=94

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,

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, 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 Komaroff published a report about increasingly

significant numbers in his Boston practice. Dr. 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 and his team of researchers at De 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.

=93I 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.=94

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.

beth , 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, 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 Hillenbrand who has over time

written two incontrovertible bestsellers, Seabiscuit: An American

Legend and Unbroken: A World War II Story of Survival.

Hillenbrand=92s 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 De's Leonard , 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

Institute for Neuro-Immune Disease (WPI). It was founded and

funded by Harvey Whittemore and his wife, Annette. Their 33-year-old

daughter, 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: =93You 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.