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I signed a book contract in the late summer of 1987 to write about the emerging disease chronic Epstein-Barr syndrome, as it was then known. My advance was a very good one--or would have been had I completed the book in the 18 month term upon which my publisher and I agreed. Remarkably, it seemed at the time, the CEO of this very large publishing company, which was about to be the target of a hostile takeover (anyone remember hostile takeovers?), had the disease himself. No doubt that is why he offered a more generous advance than several other publishers.

Later, after I was well into my research and the company was taken from him, the CEO resigned and decamped from Park Avenue to his horse farm in Virginia. We had shared a few lunches at the kind of mid-town French restaurants I would never have set foot in on my own speed. After the sale of his corporation, I never heard from him again, however. In addition, my editor suddenly stopped returning my phone calls. I assumed he was a busy person.

My book contract arrived on the heels of a two-part series I had written for Rolling Stone magazine.

I had been a contributing editor at the magazine for some years, reporting on all manner of topics. My last piece had been about Hugh Hefner’s Playboy "empire." The story hung on the much publicized accusation by Peter Bogdanovich, lover of murdered “playmate” Dorothy Stratton, that Hefner had created an atmosphere at his house, (the "mansion") in Holmby Hills, in which women were abused and degraded in ways that led to, possibly, their death.

That was the story, but the piece morphed into a larger assessment of the low-rent mystique of the Hefner enterprise. I had spent myriad long summer days hanging out at Hefner's house, interviewing him while he drank Pepsi in his pajamas and claimed credit for the sexual revolution and the liberation of women. Typically, he would go on in this vein until I ran out of that days' supply of tape cassettes. I began my reporting in a fairly neutral state of mind but ended up feeling grossed out by him and the Hollywood B-list sycophants who hung around for free meals and more. Everyone had their say in the story that resulted, of course, but I hoped that maybe a few eighteen-year-old women—the magic “legal” age Hef and his buddies preferred—were warned off the place.

The Hefner piece was published the following March in 1986. I recall the story in such detail, I suppose, because it was my last piece of journalism before life as I knew it ended, and the story was not exactly the high note I might have preferred.

A few weeks after it was published, I arose from bed one morning and found I could not stand up for very long without losing consciousness. At least a year passed before I started writing again, although I was then and for evermore impaired by disturbing, new, almost insurmountable intellectual difficulties--making Hugh Hefner, of all people, the last person I interviewed before losing forever the natural clarity I formerly enjoyed.

“Journey Into Fear,” as the Rolling Stone headline writers called my story, was a hybrid: a first person account of my own experience with this disease intermingled with straight reporting. The first part of that mix is by now as old-hat as can be, the story of every woman, man and child who acquires this disease. You know--the free fall down the rabbit hole?

I described the terror, confusion, astonishment, and the inevitable shock of discovering that no one actually believes you when you tell them you cannot walk, you cannot work, you cannot even understand what is being said on a day-time soap opera. It was "first person narrative," as they say in the biz, something I had never done before because I considered the genre indulgent and unprofessional. An archaic-seeming position today, of course.

The other part of the story was straight reporting--just the facts, if you please. Who were the scientists and what were they doing? Who were the doctors? Who were the patients? What was the disease?

I drifted into this unusual, for me, hybrid style only after spending months trying unsuccessfully to write it straight. A journalist friend of mine explained the problem after he read a draft.

“You can’t write this story without explaining what you are going through yourself,” he said. “You can’t hold this stuff back from the reader. It’s creating dissonance, something doesn’t feel right.”

I tried it his way for a few days and discovered he was right, thus beginning the effort anew.

***

The genesis of the Rolling Stone story--which was broken in two by my editor and published in successive issues—wasn’t the onset of my own illness, however. It was something altogether different. One Saturday morning in the summer of 1986, an astute friend of mine arrived at my bedside with that day's Los Angeles Times. My illness had kept me a prisoner in L.A. I had come out there a few months earlier with a book assignment and several magazine articles to write. Once stricken, I couldn't manage to get back to my home in New York, much less fulfill my commitments.

My friend pointed to a story that began on the front page, then jumped inside the paper. It was a lengthy report about an outbreak of disease in Incline Village, Nevada, and perhaps the only fair and factual newspaper report I would ever read on the subject. Two local doctors were insisting it was a serious, if unsolved, epidemic even though federal investigators had been unimpressed.

One woman in Incline said she did not have the strength to hold a coffee cup; another said, memorably, that she felt like a Raggedy Ann doll “without the stuffing.”

Maybe you can imagine the intensity of emotion I felt as I read those last words. Until that moment, I had thought only a few other people in Los Angeles had this disease--well, maybe more than a few. The actor and economist and gadfly Ben Stein, who had a column in the now defunct Los Angeles Herald Examiner, had written recently: "Is everyone in Los Angeles sick?" He went on to describe a severe, unending, puzzling, terrifying malaise. His wife had been bedridden for months.

But the L.A. Times’ account of what was happening--had happened--in Incline Village, stirred me in a way I hadn't been stirred in a long time. What had been simply a preposterous private nightmare was suddenly a story in need of coverage.

I made one phone call to the L.A. County Health Department and spoke with their epidemiologist. She told me the county was getting more calls on “Epstein-Barr” than on AIDS from doctors and citizen-sufferers every day. It was the number one concern on their call lists.

“I’m not sure we don’t have another tiger by the tail,” she said ruefully, but added that virtually the entire county health budget was going to AIDS and that this new problem could not be addressed.

Soon after, my editor at Rolling Stone called, as he had done periodically for months, to offer me an assignment. This one involved white water rafting. Nothing I said could persuade him I was as ill as I actually was. The next day, he called back to tell me that if I would do the story he was proposing, he would guarantee me the cover of the magazine. Even he thought my problem was volitional.

I took the opportunity to tell him about the LA Times article. There was a brief silence while we both pondered the obvious. He said it first:

“This sounds interesting. Maybe you ought to write about it.”

***

My first trip to Nevada, which I considered ground zero, was achieved in a haze of mishaps and near-misses. I sat through two boarding calls at the airport, missing two flights. Did I black out? I can’t even say what happened. One minute I was sitting amidst a crowd of people; the next, I was alone. An airline employee made sure I got on the third plane to Reno. Once seated, I discovered I could not fasten my seat belt. The flight attendant did it for me. I simply did not know how to manipulate those cold, oddly-shaped flaps of steel in my lap.

I spent hours with Paul Cheney. I was like an actor who needed to discipline herself to avoid breaking the “fourth wall” by looking at the audience or falling out of character on stage. I didn’t tell him my forearms felt as if they were in flames; or that I was seeing blurry, double images when he moved; or that I had a fever of 102. (Nor would I discuss my symptoms with any of the doctors I interviewed in the coming decade.) I just showered him with questions, and he was eager to answer those questions. I had interviewed hundreds and hundreds of people by then, perhaps thousands of people; people from all walks of life, up and down the ladder. I sensed Cheney was some kind of genius; he was special. He wasn’t just a small town doctor, that was obvious. It must have been obvious to the LA Times reporter, too.

Once I glimpsed Dan Peterson through a glass partition. I had no idea who he was. He was wearing a red plaid shirt, tan corduroy slacks and running shoes. He had a stethoscope draped around his neck. I couldn’t believe he was a doctor because he was so handsome; I thought he might be a nurse, or just a guy goofing around. It was confusing. He stared at me, at my notebook and pen clutched in one hand, a tape recorder in another. His gaze conveyed something close to hostility. He turned his back.

I didn’t know that by then his wife had threatened to leave him if he spoke to another reporter. He, too, was sick of reporters. No matter how carefully you explained what had happened, they never seemed to get the story right. I wouldn’t learn about all of that until I sat down with him a year later, after the Rolling Stone articles were published and I had a book contract, and discovered that he had turned the tables on me; I was being interviewed by him. He was taking his sweet time about it: was he going to trust me to tell his story? It was cliff-hanging, emotional torture.

***

Later, after my day with Cheney, I drove over Mt. Rose and back to Reno on the desert floor. I was steering a rented Jeep. Black ice covered the pavement, the wind was gusting, and a scrim of snow kept covering the windshield. Night was falling. I was dizzy and feverish and more than once veered too close to the far edge of the narrow, two-lane road winding down the mountain. I could have died on the road that evening, or so I’ve sometimes thought. I suppose that would have been okay, but I’m glad I didn’t because I still want to know how the story ends.


Somehow, I even managed to go to Bethesda to talk to Stephen Straus. I expected him to be brilliant like Cheney, I presumed I would see some kernel of compassion, some essential core of humanity, and was shocked as the minutes fled by and I could see nothing of the kind. No brilliance, not even curiosity. Instead, a fragile mask barely hiding his impatience, his conflict. He talked about how reporters and patients kept him from his work. He was harried, frustrated, and, confusingly, angry, I sensed. About what, I didn’t yet know. My innocence was still intact.

Two years later, I was in Bethesda again, this time in a spacious office at the National Institutes of Health, facing a wall of four grim-faced NIH officials. Sitting beside me was a white-haired attorney named Quinlan Shea Jr. I had gone to see Quin in Washington months earlier after reading about him in The New Republic. He was famous for his ability to pry loose government documents using the Freedom of Information Act, and he had just scored a major win against the Justice Department. He was described as the attorney in Washington, D.C. who was most skilled and aggressive at forcing the government to submit to the FOIA laws.

I had made an appointment with him simply to get some advice; I had no money to actually hire him. When I began telling him about my difficulties getting the NIH and the CDC to release documents, he was at first incredulous, then amused. “Do you mean to tell me…” were the way his questions always began. He often tossed his head back in laughter.

“Hillary, I’m going to take you on pro bono,” he had finally said, to my great surprise. His curiosity was piqued.

So now he was by my side and the NIH officials asked me why I wanted to see Stephen Straus’ data about his observations of patients in Incline Village. My reasons were none of their business; I wasn't asking for state secrets; release of this data wouldn't have threated national security. Nevertheless, I explained that Straus was presenting grand rounds all over the U.S. and Europe on “chronic fatigue syndrome” during which he inevitably referred to his “studies” of Incline Village patients. His studies, he claimed, indicated the Nevadans had no biological abnormalities.

“Maybe these people just need our help to get behind the wheels of their BMWs” Straus would say during these presentations, to rounds of appreciative applause and laughter.

Posturing as the expert, Straus employed Nevada wherever needed as a kind of comic leitmotif to highlight the absurdity of the construct that “cfs” was a bona fide disease.

I wanted to see whether Straus’ grand rounds statements were supported by data. I wanted to see his unpublished "studies."

Quin and I made our case for forty-five minutes, until the NIH brought the boom down.

“Ms. Johnson, we have called your publisher and they have told us that they have canceled your contract,” the most senior person in the room said. She seemed barely able to conceal her sense of triumph.

In fact, as I would confirm eventually, my publisher had indeed canceled my contract. They forgot to send me the memo. Months later, the same publisher brought out a book by the Canadian Ed Shorter, which made the unsupported argument that “chronic fatigue syndrome” was a psychiatric phenomenon.

Quin filed an appeal for the documents I was seeking with the Assistant Secretary of Health on my behalf. One year later, the Assistant Secretary of Health, then James Mason, ruled in my favor, ordering NIH to release them, but the NIH defied the ruling. Years passed. I gave up. One day, I received a brown envelope from the NIH’s FOIA office. I opened it carefully and approximately three dozen odd scraps of weathered paper fell out, all of them receipts Stephen Straus had collected during a trip to Brussels some years before. Taxi receipts, restaurant receipts, hotel receipts; receipts from coffee bars; receipts from bars. It was perhaps the single most contemptuous act I witnessed a government scientist commit during the nine years I reported Osler’s Web. Contemptuous of me? Of course. Contemptuous of all sufferers of this disease? I think when you do that to a journalist who is writing a book on the subject, the answer is 'yes.'

I never did get the data I sought, which strengthens my belief that Straus simply had no data about patients in Nevada, or if he did, it was inconvenient to his hypothesis, BMWs or no BMWs.

All of these memories came tumbling into my mind today when I noticed via a notice on Co-Cure that the NIH has a new Internet source available to the public. According to a press release from the Office of the Director, a “NEW NIH TOOL MAKES FUNDING DATA, RESEARCH RESULTS AND PRODUCTS SEARCHABLE.”

Called the NIH Research Online Reporting Tool, or REPORT, it’s available at www.RePORT.nih.gov.

I think a creative, insightful person might be able to find all sorts of interesting information using this new search tool.

One item of interest that this new search device provides, for example, is the amount of money the NIH is spending on particular diseases. Check this out, and this.

I’m uncertain whether the NIH’s FOIA office is currently operating in a lawful manner, of course. It's been years since my often humilitating tussle there; times change, people change. Stephen Straus died two years ago. Amazing how much he hated oversight; amazing how hard you had to work for information back then.

I hope I don't have to eat my words, but this Internet search device has the feel of progress. Someone in Bethesda decided it was time to let the sun shine in a bit.

As a result we are now on notice that the National Institutes of Health plan to spend $3 million on this mature 25-year-old pandemic in the year 2010.

As Anita says in "West Side Story," "Smoke on your pipe and put that in!"

Finally, for those who are wondering, Osler’s Web found another publisher and another editor—-in the form of Michael Denneny, the editor of And the Band Played On--a year after Quin and I were informed by the NIH that my contract had been canceled. Michael Denneny understood, as did I, as did my editor at Rolling Stone, and perhaps as did Stephen Straus, that what happened in Incline Village, Nevada was a big story.


###

(from Co-Cure, September 5, 2009)


U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
NIH Office of the Director (OD)
For Immediate Release: Friday, September 4, 2009

CONTACT: Megan Columbus, 301-435-0937,

NEW NIH TOOL MAKES FUNDING DATA, RESEARCH RESULTS AND PRODUCTS SEARCHABLE

Comprehensive funding information for NIH grants and contracts is now
available on the NIH Research Portfolio Online Reporting Tool
(RePORT) thanks to a new, user-friendly system called the RePORT
Expenditures and Results, or RePORTER. RePORTER combines NIH project
databases and funding records, PubMed abstracts, full-text articles
from PubMed Central, and information from the U.S. Patent and
Trademark Office with a robust search engine, allowing users to
locate descriptions and funding details on NIH-funded projects along
with research results that cite the NIH support.

"With the addition of RePORTER, we have taken a big step toward
providing NIH's broad community of stakeholders-including biomedical
researchers, research administrators, science policy makers, and
members of the general public-with richer information, accessible in
a form designed to meet their diverse set of needs," said Sally
Rockey, Ph.D., acting deputy director of extramural research. "In
addition to a being a public service to our stakeholders, it's a good
example of the transparency and openness in government that the
public deserves and has come to expect."

User-defined searches allow the public to refine, export and analyze
results and provide insights into NIH spending, as well as research
results across NIH-funded projects, institutions, investigators or
scientific concepts. Searching for grants funded by the Recovery Act
is made especially easy by a checkbox that limits searches to that
area of interest.

Plans for improvements in RePORTER include allowing users to
personalize their experience. NIH's goal is to provide users the
ability to save favorite searches, set alerts for new grants,
publications and patents, and even export the entire RePORTER database.

RePORTER is the newest tool on the RePORT website, NIH's
comprehensive online repository of reports, data and analyses of
research-related funding. RePORT provides a wealth of data on NIH's
research-related grant and contract funding, including general
reports and statistics, funding by research, condition and disease
categories, new data visualization tools, and more. Dynamic reports
and geographic mapping tools offer unparalleled access to information
on NIH's Recovery Act grant funding on an individual project, state
or national level.