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Laura Hillenbrand interview

Monday 19 October 2009

Laura HillenbrandThe New Yorker has an interview with author Laura Hillenbrand (pictured) who has had ME/CFS for many years. Laura will be best known to readers as the author of best-seller Seabiscuit: An American Legend which was made into a 2003 movie.

The New Yorker published an article by Laura in 2003 about her experiences with ME/CFS (“A Sudden Illness”). The following interview asks how Laura has been since then, her views on XMRV, and how her life is nowadays:

Back Issues: Laura Hillenbrand

Timely notes from The New Yorker’s archive.

[October 15, 2009]

As reported in the Times and elsewhere, the journal Science this week published a study linking chronic fatigue syndrome to a possibly contagious retrovirus that has also been implicated in an aggressive form of prostate cancer. (The Science study is available only to the journal’s subscribers.)

C.F.S. is debilitating to those who suffer it, but while research has identified a host of physical abnormalities in patients, the cause of the disease has proved elusive. In 2003, Laura Hillenbrand wrote about her experience of C.F.S. in The New Yorker. Her essay, “A Sudden Illness,” recalls the earliest manifestations of the disease while she was a student at Kenyon College and the long process of receiving an accurate diagnosis. In the piece, Hillenbrand also describes the demands of writing her book, “Seabiscuit,” while suffering from C.F.S.

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.

The full interview is available here.

In a separate interview, Laura offered her thoughts to NPR.



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