September 5, 2011, 5:58 AM
Several months ago, researchers proved wrong the 2009 finding that
chronic fatigue syndrome is caused by a bacteria. Now, without a cause
to focus on, patients and doctors are back in a medical limbo.
STEVE INSKEEP, host:
It's MORNING EDITION from NPR News. I'm Steve Inskeep. Good morning.
Today, on Your Health, we have two reports on Chronic Fatigue
Syndrome. We'll hear about possible treatments in a moment. First,
we'll ask some questions about the cause. Researchers still are not
sure why people suffer pain, exhaustion, anxiety, insomnia and other
symptoms, sometimes for years. They have suspected viruses but have
not proven which one. Joanne Silberner reports on what that
uncertainty means for people living with the disease.
JOANNE SILBERNER: Clinical psychologist Katrina Byrne of Seattle used
to run, play racquetball, see patients, and teach courses. That was
before she developed Chronic Fatigue Syndrome.
Ms. KATRINA BYRNE (Clinical Psychologist): There are days when I'm
bedfast and I get up only to use to the bathroom or get something to
eat or drink. There are days when I'm housebound, and that's the most
typical day for me right now.
SILBERNER: For the past 27 years, she's been prone to severe crashes
where she's sensitive to light and noise and unable to read or watch
Ms. BYRNE: Ill, like the way you feel when you have the flu, an
unrelenting, unremitting flu.
SILBERNER: The first doctors Byrne went to weren't much help.
Ms. BYRNE: One doctor told me it was related to anxiety; another one
said it was dehydration; a third one said it was hormonal; a fourth
one said it was stress-related and I needed to exercise.
SILBERNER: The problem back then was that no one much knew what was
going on. With no known cause, there was no definitive lab test there
And Anthony Komaroff, a professor of medicine at Harvard Medical
School, says that troubled doctors.
Mr. ANTHONY KOMAROFF (Harvard Medical School Medical Professor): I
would say most doctors were very, very skeptical. First, this illness
is defined, predominantly, by a group of symptoms, and so doctors were
asking what's the evidence - objective evidence - that there's
something physically wrong with these people?
SILBERNER: Over the years, researchers have identified various brain,
immune system and energy metabolism irregularities. Komaroff points to
a study done a couple of years ago by the Centers for Disease Control
and Prevention. It showed that the majority of doctors now recognize
Chronic Fatigue Syndrome as an illness. Today, an estimated one
million Americans are thought to have it.
But lots of regular folks are still doubters, at least in the
experience of Cynthia Johnson of Lake Oswego, Oregon. She says the
disbelief makes the disease worse. Johnson is a breast cancer
survivor, but in October 2009, she was hit with a bad flu that hasn't
Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and
they're very excited that you survived. They congratulate you for
surviving. Nobody does that, day to day, for CFS. They are just like,
SILBERNER: Just as she was diagnosed a couple of years ago, a report
came out in a scientific journal linking a virus called XMRV to
Chronic Fatigue Syndrome. But 14 months later, four scientific papers
claimed the virus was just a lab contaminant. Few in the field are
hopeful that the cause has been discovered. The federal government is
sponsoring two large studies that should answer the question once and
For Katrina Byrne in Seattle and Cynthia Johnson in Portland, the
initial report, even if it turns out to be a blind alley, did some
good. Cynthia Johnson.
Ms. JOHNSON: I was happy to see all the attention in the press to
XMRV, simply to give attention to the disease. So my first thought was
at least people are writing about it.
SILBERNER: Johnson has been given a 50-50 chance by her doctor of
throwing off the symptoms in a couple of years. She knows what she'll
do if an effective treatment comes along.
Ms. JOHNSON: I'd like to make plans, you know, plan for the future,
plan for tomorrow, and know that it would go well, to make an
appointment for the doctors, or a haircut, or to meet friends and be
confident that I would feel reasonably well. You know, walk as far as
I could and go to the beach.
SILBERNER: Some changes are coming soon. The results of those two
studies on whether there's an XMRV connection may be released at a
meeting in Canada at the end of the month. Meanwhile, advocates for
people with Chronic Fatigue Syndrome are pushing for a name change to
make the name sound like more than a description of someone who just
needs a nap. For NPR News, I'm Joanne Silberner. Transcript provided
by NPR, Copyright National Public Radio.