She said that the four years it took her to write the account of the legendary race horse helped her to transcend her debilitating illness. She said, “Here was a story I could get lost in, with fascinating
subjects whose lives were complicated and vigorous — everything my life wasn’t. Writing it
helped me redefine myself, to become Laura the author instead of Laura the sick person. That was very rewarding.”
She was heaped with the kind of acclaim writers dream of having in their career. But the book that brought her all of that attention also inflamed the symptoms of CFS, including vertigo that she could only deal with by writing in long-hand with her eyes closed. The day after she turned in her manuscript, Hillenbrand said, her health collapsed.
I recall the intense sadness of Hillenbrand's story, and of her decades-long struggle to have the energy to get up and have breakfast, let alone find enough to write that kind of book. But the bigger picture of CFS and how its sufferers have been judged, mistreated, and misdiagnosed was just as haunting.
I thought of Hillenbrand immediately when I read the news last week that a breakthrough had been made -- the recognition that CFS is spread by a virus and is not a psychological affliction, a reaction to past abuse, or simply made up as it had so often been assumed.
The report takes some untangling to understand, but is worthwhile in getting because of what it may show about how prevalent and valid CFS really is.
The journal Science published a study revealing that a virus had been discovered in prostate tumors. The xenotropic murine leukemia virus-related virus, or XMRV, is believed to be the third in a line of human gammaretroviruses. It falls after H.I.V. and a type of viruses that cause lymphoma and leukemia. These viruses cause permanent infections that can be passed between humans.
The study also showed that XMRV to be overwhelmingly present in people suffering from chronic fatigue syndrome. Of the 101 participants studied, 67% had the virus.
Of the healthy participants in the control group of this study, 3.7% were found to have "active infections" from this virus. Although this number may seem slight, if it is projected to the larger American population, that would mean 10 million people in this country have the virus present in their cells.
It is noted that not everyone who carries XMRV will develop chronic fatigue syndrome. However, the estimation of how many Americans have it is startling - 1 million people, very close to the number of people who have H.I.V.
These viruses now seem to be scientifically linked, but there are vast differences in how they are treated and perceived, and what the outcome has been historically for sufferers.
One doctor specializing in the treatment of both AIDS and CFS, encapsulated those differences in this quote:
"My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families," noted Dr. Nancy Klimas.
As an immunologist at the University of Miami School of Medicine, Dr. Klimas that she would rather have AIDS if given the choice, in part because of the billions of dollars of funding for its research.
This study could very well change how CFS is researched, medicated, and possibly, even prevented. The hope here is that millions of people who may develop the syndrome won't have to endure the physical and emotional pain that sufferers have for the 25 years CFS has been known to exist.
This author claims that the C.D.C. has long ignored and invalidated CFS, and has gone so far as to misappropriate funding marked for its research. Meanwhile, patients have fallen victim, not only to the syndrome, but to "quackish theories and harsh ideologies." This has made the everyday pain and the nearly impossible recovery even harder to bear.
Clearly, many more people are at risk of contracting chronic fatigue syndrome. And thinking of all the potential that could stifle -- writing more books, having and participating in families, proposing legislation, finding more cures -- seems to make us all sufferers of this neglected syndrome.
Here's hoping that this study marks a new chapter in understanding and halting chronic fatigue syndrome.
What do you know about chronic fatigue syndrome? Are you a sufferer or do you know someone who is? Have you ever believed it was a made-up, unfounded affliction?
[photo credit: Getty Images]
