Wednesday, March 26, 2014

SF Chronicle article about IACFS Conference

Doctors, drugs slowly coming around to chronic fatigue
Erin Allday
Published 4:39 pm, Tuesday, March 25, 2014

In a conference room at San Francisco's Parc 55 Hotel, a hundred or so
people, most of them patients with chronic fatigue syndrome, were
listening to a panel of doctors talk about treatment options.

Eventually, panelists would talk about the potential of antiviral and
immune-modulator drugs. But first came Dr. Charles Lapp, who runs a
treatment center in North Carolina focused on chronic fatigue and
diseases thought to be related to it.

"We have no known cause, no cure," Lapp told the crowd. "I feel
patients do best when they accept the illness - when they accept that
they're a new person, with new energy levels and new limitations."

There were a few nods around the room, but not much reaction
otherwise. One woman lay sprawled across two chairs, her eyes closed.
Another propped her feet on a chair and rested her head against a

The patients attending last week's conference - a biennial meeting of
the International Association of Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis - had heard it before. Their condition, despite
being recognized by global and national health agencies for several
decades, is still largely misunderstood and often very difficult to

Chronic fatigue syndrome - also known as myalgic encephalomyelitis, or
ME - is thought to afflict up to a million people in the United States
with a broad range of symptoms, the most notable of which is intense,
debilitating fatigue.

Other symptoms are varied and often associated with more common, and
more easily diagnosed, diseases. Patients may suffer muscle and joint
pain, overall weakness, insomnia, and cognitive impairments that are
commonly described as a "brain fog."

Struggle for diagnosis

For decades, chronic fatigue syndrome was at best ignored by doctors
and scientists alike. Many doctors refused to believe it was an actual
disease, and those who did buy it were convinced it was a mental
illness, not something with a biological basis.

The medical field has come around slowly, but patients say they still
struggle to be diagnosed, because there are no simple test results or
exams to identify the disease. And once they get a diagnosis, there's
not much that medicine can do for them.

Doctors don't know what causes chronic fatigue syndrome - it could be
triggered by an infectious agent like a virus or be due to an
overactive immune reaction. Some people may be genetically predisposed
to getting sick. There may be environmental factors too.

"People want to define this illness better, but research is pointing
us in different directions. It hasn't coalesced around a certain
theme," said Fred Friedberg, a researcher based in New York's Stony
Brook University who is president of the international chronic fatigue

"I think it must be multifaceted," Friedberg said. "I don't think
we're going to get a smoking gun."

Lacking treatments

No federally approved treatments exist for chronic fatigue syndrome,
and there have been few trials looking into drug therapies. When drugs
show some promise in small studies, the results have proved difficult
to reproduce in larger trials.

So most patients get by with coping strategies - like learning to pace
themselves to maintain stable energy levels - or dietary changes.
Patients and the handful of doctors specializing in the disease have
been clamoring for money for research and support, but the condition
is still largely ignored by many of the largest funding agencies and
research institutions.

Resistance lessening

"For a long time institutions have been infected by this view that CFS
wasn't to be taken seriously," said Dr. Jose Montoya, an infectious
disease specialist who helped establish a chronic fatigue syndrome
team at Stanford School of Medicine almost a decade ago. "In the
beginning, when I started my research in this, the reaction was people
rolling their eyes, laughing at me. People would say I was committing
career suicide."

That's changing, but slowly, Montoya said. Just last week, after a
daylong meeting of scientists and patients at Stanford, Montoya said a
dean in the medical school took him aside and said, "Jose, what you're
doing is valid, it's important."

"They're not giving us the resources, the money yet," Montoya said.
"But just having that support is a big deal. At least we're not
getting active resistance."

Montoya is the lead investigator for a study that opened this year
looking at a combination treatment of the drug Ritalin and a nutrient
supplement. The treatment was developed by a Mill Valley physician,
Dr. Jon Kaiser.

Double-blind trial

The trial, which will enroll about 100 patients, is placebo-controlled
and double-blind, so patients and doctors won't know who's getting the
drugs and who isn't. Kaiser, whose company K-Pax Inc. is supplying the
nutrient supplement and funding the trial, hopes to have results early
next year.

Kaiser said he's given the drug therapy to some of his own patients,
who were positive enough about the medication that he was encouraged
to put money into a formal trial.

One of Kaiser's patients, Lisa Geiszler of Santa Cruz, started taking
the Ritalin-combination therapy a year ago and said she's noticed
significant improvements in her energy level and her ability to think

Geiszler was a serious cyclist and teacher specializing in literacy
training before she became sick in 1997. She eventually had to quit
her job and was frequently bedridden for days or weeks at a time. Just
a walk down the street was beyond her ability.

"Now I've noticed some cognitive improvements. It's easier to
comprehend what I'm reading. I'm able to remember more things," said
Geiszler, 47. "I can walk eight minutes a day. I no longer need any
help with the shopping, the cooking, washing.

"My life was very restricted and very small for a long time, and it's
radically changed," she said.

They've seen it before

But other doctors and patients remain skeptical. They've seen other
drugs show promise in the past. It's not unusual, patient advocates
said, for a drug or other treatment to appear beneficial based on
mostly anecdotal reports, but fail in clinical trials.

Last year, the U.S. Food and Drug Administration rejected one drug,
called Ampligen, over protests from many patients who said their
condition had improved while on the medication. The FDA said it needed
more proof.

"If you could offer up any treatment, at least to a subset of
patients, that would be so helpful. Even if you could help somebody
just 20 percent, give them a little bit more energy, that would be
huge," said Susan Kreutzer, a Danville woman with chronic fatigue
syndrome who has gone to Washington, D.C., multiple times to request
more funding for research.

'I have to pace myself'

For the most part, what's worked for her are coping strategies - or as
Dr. Charles Lapp said at the meeting last week, learning ways to live
with her illness.

"I have to pace myself. I have to rest a lot," Kreutzer said. "My
friends would say I'm doing much better these days. But I still have a
lot of the cognitive problems when I'm tired.

"You wouldn't want to put me in charge of anything," she said with a laugh.

Erin Allday is a San Francisco Chronicle staff writer. E-mail:

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