Validation in a Virus?

From NEWSWEEK - click HERE for the original article and to see the spectacular photo accompanying the article.

Validation in a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.

It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”

It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”

It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”

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HERE is another article about Laura Hillenbrand, with a telephone interview:

Hillenbrand lives in Washington, D.C., and is currently completing work on her second book. She kindly agreed to a brief telephone interview earlier this afternoon.

How has the C.F.S. been since the publication of your essay in The New Yorker in 2003?

The C.F.S. is far worse, unfortunately. I had a catastrophic relapse in 2007 that sent me back to square one. It has been two years since then and I have only been able to leave my house twice. I’ve only recently begun getting down my staircase every day. It’s the way the disease works. Everybody gets relapses. Mine tend to be really bad.

How does the news about the Science study make you feel, and do you have a sense of how it has been received in the C.F.S. community?

The C.F.S. community is all abuzz. I’ve never seen people this excited. And it is for good reason. As for myself, I am guardedly optimistic. I’ve been around this block before. The findings are very preliminary and they do need to be replicated. It needs to be demonstrated that this virus is a cause and not a bystander. But, with that said, the findings are stunning. All of us with C.F.S. have long felt that a virus is involved. The symptoms are so viral. You get fevers and chills and aching, a very sore throat, huge lymph nodes, and all the things you would get with flu, times ten, and they never go away.

The researchers have said that in a follow-up study, ninety-eight per cent of some three hundred C.F.S. patients tested positive for this new virus. If replicated, that’s a stunning finding, a potential blockbuster for patients. It could be, finally, the thing that makes treatment and, eventually, a cure, possible. But you have to be circumspect with any medical study, and this is very preliminary. We’ll all be waiting eagerly for the results of follow-up research.

What are you working on now?

I’m just finishing my second book, a biography of the 1936 Olympic runner Louis Zamperini, who became a bombardier in the Second World War. He crashed in the Pacific and floated on a raft for forty-seven days across two thousand miles before being captured by the Japanese. I’ve been working on that since I finished “Seabiscuit.”

Has it been easier or harder to work on this book than on “Seabiscuit”?

It has been much more difficult than the first book, which is disappointing because “Seabiscuit” was very hard. It’s been tremendously difficult to find the strength to write, and a big part of this relapse has been a return of vertigo. Right now I’m doing the citations and the hardest thing to do while suffering from vertigo is to look at the page numbers and things like that. The text of the book is just about finished and I’m just annotating now. I will finish it!

Do you have a title and publication date for the book yet?

The book is tentatively titled “Unbroken” and will be published by Random House next year.