Amberlin Wu is sick and tired of being sick and tired. It's pretty safe to assume anyone in her position would feel the same -- the 38-year-old Mountain View woman has been exhausted, off and on, for the past 15 years.
She has what is known as chronic fatigue syndrome -- CFS for short -- a complex condition that is not very well understood by the medical community, and which can present a wide range of symptoms. Patients diagnosed with CFS report frequent sore throats, allergies or sensitivity to food, irritable bowels, intense migraines and vertigo.
And then there is disease's namesake symptom: extreme fatigue that can last for months on end and which is unabated no matter how much a patient sleeps.
Wu is sitting up in her bed. It is where she spends the majority of her time these days, she says. A portable commode stands to the right of her mattress. Walking the 15 or so steps to the hallway bathroom is out of the question today.
Some days are worse than others, and today isn't the worst, but it is far from a good day. Since she first began noticing symptoms, she has had periods -- which can last for months -- when she has felt right as rain. Of late, however, she hasn't left the house, or her bed, much at all.
"I don't have any plans," she says in exasperation. "Everything I've ever planned in my life got cancelled."
Wu believes she may have contracted the disease sometime in 1995, although she has no idea how. That year she came down with a bad, months-long cough and eventually developed pneumonia. Antibiotics cleared up her chest congestion, but Wu was fatigued for months afterward and has been battling bouts of exhaustion ever since. In addition to her ever-present lethargy, Wu said she frequently comes down with bad colds, the flu and suffers from migraines, vertigo, diarrhea and terrible stomach cramps.
"Amberlin, in a number of regards, is an unusual case, but in many ways she is also very typical," says Dr. Andy Kogelnik, a CFS specialist. He's a physician at El Camino Hospital and director of the Open Medicine Institute, a private, Mountain View-based disease research organization. He says that Wu's case is relatively severe, but that all of her symptoms have been known to result from CFS.
Kogelnik and some of his colleagues plan on publishing a paper on Chronic fatigue syndrome soon. With his paper, Kogelnik will be officially chiming in on a debate that is still in its infancy, despite the fact that the first widely publicized outbreak of CFS occurred in the Lake Tahoe region in the 1980s.
Back then, CFS was referred to as "yuppie flu" by some who felt that individuals claiming to have the disease were simply lazy. It is a stigma "that's hard to overcome," has inhibited progress on CFS research and prevented patients from being taken seriously, Kogelnik says.
"Most med schools don't teach about it, actually" he says, noting that due to the perception among many that the disease isn't real, or is all in a patient's head, a feedback loop of sorts has been created. As long as there is a significant contingent that doesn't take CFS seriously, getting funding for research will be difficult.
"It's so frustrating," says Wu, who says doctors have accused her of faking her disease and says hospitals have denied her care, because they know insurance companies won't pick up the tab for CFS-related treatment. "People think it means you're just tired."
Not just tired
In Wu's case it is much more than that. Toward the end of her conversation with the Voice, she is having trouble concentrating. At one point she pauses for 15 seconds in the middle of a sentence, apparently trying to remember what she was trying to say. After the interview, she asks for a moment of privacy to use her bedside commode. Shortly after the door is closed a thud and an anguished cry is heard through her bedroom door.
Rushing into the room, Wu's full-time caretaker, Lua Finau, finds that she has fallen attempting to get back into bed. Wu writhes in pain, clutching her stomach, as Finau first helps her back under the covers and then runs to the kitchen to retrieve several opaque orange bottles filled with various painkillers and nerve dampeners. She gives Wu a pill and shuts the blackout drapes to block the mid-afternoon sunlight.
Later, Finau, a certified nurse's assistant, explains that Wu was suffering from one of her regular stomach cramps and a migraine. "That's how she is," says Finau, who does not doubt the validity of CFS in the least. "That's her illness -- something that she cannot control."
Many diseases in one
"This is truly a real condition and not just in someone's head," Kogelnik says. And slowly but surely, it seems that more people in the medical community and the general population are agreeing with him.
A recent study linking CFS to a retrovirus found in mice -- known as xenotropic murine leukemia virus, or XMRV -- received attention from the national media.
Kogelnik, for his part, believes that XMRV is only part of the equation, especially in patients like Wu. "To me, (CFS is) an overlap of a number of different diseases that may be related but are probably not all the same thing," Kogelnik says. He believes that in cases like Wu's, multiple diseases may be acting synergistically.
Until more research is done, however, no one will be able to say with certainty just what CFS is, how it spreads or what causes it, Kogelnik says.
For now, unfortunately for Wu and others afflicted with the disease -- as many as 7.5 million in the United States, according to a recent paper published in Population Health Metrics in 2007 -- there is little that can be done to treat the disease, other than to hole up in bed and manage symptoms with drugs and therapy.
Wu paid about $20,000 last year in medical bills. She pays $500 a month for insurance, not counting Finau's services, which cost $4,000 a month. She has disability insurance, but it only provides her with $2,000 each month. Her mother and father, who are aging, help her pay all of her bills.
"My parents' retirement has completely changed because of my disease," she says. "All their money goes into keeping me alive."
The disease has not only put stress on Wu and her family, but it has deeply impacted her social life. She has lost friends and romantic partners because of her disease. "I think there is so much hopelessness in it for people watching," Wu says of the friends who have tried to help her in the past, only to give up and lose touch. "At some point people have to get back to their lives."
Wu has mixed feelings about the possibility that XMRV could be at the root of her disease. "It's fantastic that it is getting the attention of the country," she says. If the medical community can point to something concrete, then the disease may finally get the attention it deserves, she says. On the other hand, Wu has been on anti-retroviral drugs before -- a treatment she equates to "torture."
For her part, Wu has tried to make the best of the cards she has been dealt. She has helped to organize a support group for CFS sufferers, which meets every third Sunday from 2 p.m. to 4 p.m. at the Palo Alto Medical Foundation's Mountain View center. Those interested in finding out more about the meetings can send an e-mail to [email protected]
When asked how she managed to muster the energy to work on anything outside of her health, she echoed the mission statement of her support group:
"No one should go through this alone."