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"Methods" from Osler's Web

An explanation of the journalistic methods author Hillary Johnson employed in her reporting on the ME/cfs pandemic. Excerpted from the original edition of Osler's Web:

Copyrighted Material © 1996, 2006 Hillary Johnson
All Rights Reserved
Not To Be Reproduced Without Permission of the Author

"The following is a work of first-hand reporting. I created no composite characters. All of the people described in this book exist. I conducted the vast majority of the interviews in person and, in most cases, the interviews were tape-recorded. All of the names are real except those of a small number of patients who agreed to be interviewed on the condition that their privacy be protected. In such cases, I used pseudonyms but identified them as such. In the rare cases when I describe someone’s thoughts, those thoughts were described directly to me. When I describe private scenes among scientists, patients, or others, I was usually present; in the rare instances when I was not, sources were present who confirmed events, or else dialogue was obtained directly from taped remarks.

I conducted the interviews for this book over a period of nine years, beginning in the fall of 1986.

I also obtained information through the Freedom of Information Act in the form of memos, letters, and other government documents. The FOIA, in principle, aids cititzens seeking to understand the workings of government. The Centers for Disease Control were generally responsive to FOIA requests. The National Institutes of Health were minimally responsive, ignoring repeated entreaties for compliance and even, upon appeal, an order to comply by the assistant secretary of health, James Mason. I circumvented these barriers on occasion when federal employees or third parties provided documents directly to me.

Other sources for this book include scores of scientific papers from the medical literature as well as books written on chronic fatigue syndrome and related subjects by other authors. When I quote or refer to a specific scientific paper or book in the text, the formal citation can be found at the end of the book.

Correspondence between doctors and patients, and between doctors and their colleagues, provided to me by the correspondents, also informed my research process, even though I quoted few of these letters directly."