Unlocking Chronic Fatigue Syndrome

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THE WALL STREET JOURNAL

HEALTH

MARCH 22, 2011

Unlocking Chronic

Fatigue Syndrome

By AMY DOCKSER MARCUS

As scientists race to find a biological cause for

chronic fatigue syndrome, long considered by many

doctors to exist in patients' heads, the National

Institutes of Health could shed new light on the

debate at a major scientific workshop on the

disorder.

Researchers at the University of Utah and elsewhere

are working to create diagnostic tests, based partly

on proteins or other markers that appear to show up

in greater quantities in patients with chronic fatigue

syndrome.

Diagnosing the disorder is difficult, in part because

symptoms vary among patients.

Other scientists are trying to understand why other

infections, such as mononucleosis, appear to prompt

chronic fatigue syndrome in some patients.

And in a program at New York's Columbia University,

researchers are seeking to identify pathogens that

may appear prominently in patients with the

disorder. Researchers will be testing " for all those

agents that we know affect vertebrates on this

globe, " says Mady Hornig, who heads the Columbia

program.

Chronic fatigue syndrome affects between one

million and four million Americans. They suffer from

memory and concentration problems, debilitating

pain and severe fatigue. Unable to identify a cause,

doctors often dismissed these patients as

complainers.

Currently, diagnosing chronic fatigue syndrome is

largely a process of elimination. Molly J. Billings, 22

years old, first showed symptoms of the disorder in

2004, including headaches, muscle aches, fatigue

and weakness. A year later, she could only get

around by wheelchair and was bed-bound most of

the time.

She endured years of tests to rule out other medical

explanations for her condition.

" It was horrible to go and not find anything, " says

Ms. Billings, who lives in Kendall, N.Y. " I want a test

that will give me a finite result. " Today, her

symptoms have shown gradual improvement. She

attends classes twice a week at a local community

college and is able occasionally to go out with

friends.

CFS, also known as ME for myalgic encephalo-

myelitis, got a boost of attention in 2009 when the

journal Science published a study that found the

retrovirus XMRV was present in most members of a

group of chronic fatigue syndrome patients.

The 2009 study divided scientists and led to intense

debate about whether the XMRV link is a

breakthrough or a result of lab contamination. The

study launched a wave of new research.

Komaroff, a doctor at Harvard Medical

School who treats chronic fatigue syndrome patients,

was involved in a study that found viruses in the

same family as XMRV in his patients.

Meanwhile, Brigitte Huber, professor of pathology at

Tufts University, was involved in separate work that

failed to find XMRV. They are now collaborating on a

project that received funding last year to study two

viruses in patients with the syndrome.

Because symptoms of the syndrome tend to wax and

wane, the researchers are investigating whether the

viruses may be easier to detect when the symptoms

are flaring.

Dr. Komaroff is taking blood samples from patients

when they are feeling relatively well and when their

symptoms are pronounced.

Dr. Huber will then analyze the blood to see if she

can detect higher amounts of these viruses during

times when people feel worse

G. Montoya, a researcher at Stanford University,

is searching for possible infectious agents in chronic

fatigue syndrome. " If we can find the infectious

triggers, we can provide intervention, " he says.

Dr. Montoya's team enrolled 30 patients with

elevated levels of antibodies against Epstein-Barr

virus and HHV-6, a herpes virus, in a trial and

treated them with valganciclovir, an anti-viral

medicine.

Dr. Montoya says patients on the drug showed

improvement in cognition and fatigue. Researchers

are now analyzing the patients' immune proteins to

see if there are patterns that will help doctors figure

out in advance who will and won't respond to

therapy.

A number of efforts are underway to try to develop

diagnostic tests. Researchers at the University of

Medicine and Dentistry of New Jersey and Pacific

Northwest National Laboratory reported recently that

they found proteins in the spinal fluid of people with

chronic fatigue syndrome that distinguished them

from people with Lyme disease, which has some

similar symptoms, and healthy controls.

The next step is to narrow down the list of proteins

to find " the best biomarkers for what is going wrong

in the central nervous system, " says E.

Schutzer of the University of Medicine and Dentistry

of New Jersey who helped lead the study.

At the University of Utah, researchers are working on

what they hope might ultimately lead to a test for

chronic fatigue syndrome.

Forty-eight patients with the disorder and healthy

controls are involved in a trial in which they undergo

a 30-minute exercise challenge.

Even after moderate exercise, there were increases

in gene expression markers in the blood for two days

that allowed researchers to distinguish chronic

fatigue syndrome patients from healthy controls.

More than 100 scientists, researchers and advocates

are expected to gather at the NIH workshop in

Bethesda, Md., attending sessions focused on such

medical topics as infectious diseases, systems

biology, immunology and neurology.

By contrast, the last NIH scientific workshop, in

2003, had more emphasis on the psychological

aspects of the disease, including stress, insomnia

and depression.

Medical history has other examples of diseases that

were not taken seriously but later turned out to have

biological causes.

Multiple sclerosis was once misdiagnosed as hysteria

or chronic alcoholism. Today multiple sclerosis is

suspected to be an auto-immune disorder.

Stomach ulcers were thought to be caused by stress

until two Australian scientists proved the bacteria

Helicobacter pylori was the cause, work that won the

Nobel Prize in 2005.

" The door has been opened by the retrovirus,''

says Schweitzer, a former history professor who

has chronic fatigue syndrome and was tapped to

serve on the steering committee planning the NIH

conference.

" Now we want to bring in all the scientific

research that is being done. "

``

Write to Amy Dockser Marcus at

amy.marcus@...