Mort Zuckerman
2011-11-06 15:36:03 UTC
http://online.wsj.com/article/SB10001424052748703858404576214443015558976.html
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.
A Short History of XMRV
View Interactive
Cleveland Clinic
See a timeline of the history of the XMRV retrovirus.
What It Feels Like
View Document
[docid=110321230246-f4a24844203d45fb9d34299807c83e2f|
file=mollyscfsstory]
Read an essay by Molly J. Billings, 22, who suffers from chronic
fatigue syndrome.
* More photos and interactive graphics
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.
Enlarge Image
CFSjp
Close
CFSjp
Will Yurman for The Wall Street Journal
Molly J. Billings, who has chronic fatigue syndrome, left, with her
mother, Edwina, in their Kendall, N.Y., kitchen.
"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 encephalomyelitis, 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.
Anthony 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.
Enlarge Image
CFSchart
Close
CFSchart
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.
Jose 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 Steven E. Schutzer
of the University of Medicine and Dentistry of New Jersey who helped
lead the study.
Earlier
Nearly 25 years after the "Lyndonville outbreak" of chronic fatigue
syndrome, a controversy is brewing among scientists over what causes
the disease. A small-town doctor hopes his patients will help provide
the answer. WSJ's Jason Bellini reports.
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 Mary 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 ***@wsj.com
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.
A Short History of XMRV
View Interactive
Cleveland Clinic
See a timeline of the history of the XMRV retrovirus.
What It Feels Like
View Document
[docid=110321230246-f4a24844203d45fb9d34299807c83e2f|
file=mollyscfsstory]
Read an essay by Molly J. Billings, 22, who suffers from chronic
fatigue syndrome.
* More photos and interactive graphics
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.
Enlarge Image
CFSjp
Close
CFSjp
Will Yurman for The Wall Street Journal
Molly J. Billings, who has chronic fatigue syndrome, left, with her
mother, Edwina, in their Kendall, N.Y., kitchen.
"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 encephalomyelitis, 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.
Anthony 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.
Enlarge Image
CFSchart
Close
CFSchart
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.
Jose 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 Steven E. Schutzer
of the University of Medicine and Dentistry of New Jersey who helped
lead the study.
Earlier
Nearly 25 years after the "Lyndonville outbreak" of chronic fatigue
syndrome, a controversy is brewing among scientists over what causes
the disease. A small-town doctor hopes his patients will help provide
the answer. WSJ's Jason Bellini reports.
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 Mary 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 ***@wsj.com