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From the Introduction to Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson

Several years ago,
a group of neuropsychologists published a study correlating the fragmented writing style of a subset of nuns with their higher incidence of Alzheimer's disease later in life. Looking at early school writing samples from over 700 retired Midwestern nuns, they found that young novices who wrote biographical essays in very simple sentences later perished with symptoms of Alzheimer's, whereas those with more complex prose styles did not.

~~~When I began editing Stricken, I became painfully aware of the way chronic fatigue immune dysfunction syndrome (CFIDS) also undermines the linguistic process and defeats the efforts of people with CFIDS (PWCs) to convey their own hermetic world. CFIDS is a multi-systemic disease that, among other things, leads to severe cognitive problems such as memory loss and word-finding difficulties. One remarkable study, utilizing specific brain scan techniques, found the effects of CFIDS on the brain to be strikingly similar to those of AIDS dementia. Earlier research discovered punctate lesions in CFIDS brains resembling those of multiple sclerosis patients. Dr. Paul Cheney found that in dual chromatography analyses, many CFIDS patients actually had more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients. Dr. Sheila Bastien, who studied a group of educated patients, was stunned to realize that patients who appeared very lucid had suffered tremendous drops in IQ points, so severe in some cases that "a few performance IQs were startlingly close to the legal definition of idiocy." Thus, as I culled submissions, writers with higher education degrees sent me notes apologizing for their choppy sentences. Published poets told me the subject matter of their own illness was too painful, too difficult to convey. Reliable literary friends promised to write me pieces and then sent frantic e-mails saying they were bed bound, having a severe relapse, or too brain-fogged to begin. One writer - in a classic CFIDS haze - actually mailed me her medication schedule. Often, I wished I were editing a book on, say, workaholism or hypermania. I felt like the editorial Cruella De Vil.

~~~As a seven-year CFIDS sufferer and published writer, I knew how much the very act of writing, the laborious mental output, even the exertion of putting a submission in an envelope or licking a stamp, depleted so many of those who sent work. As I edited this book, I was almost completely homebound, sick beyond my wildest imagination, and struggling every minute myself. I came to understand the dearth of first-person CFIDS narratives and the contrasting abundance of misinformed articles speaking for the ill population. One writer who had largely recovered gently refused my request to anthologize a previously published piece of his, since he didn't want his painful and inchoate experience immortalized. His anxiety was especially touching in this epidemic of public paranoia, in which words have been given extreme diagnostic power and many have implied infection can happen with the mere uttering of a name. In the absence of first-person narratives, chronic fatigue syndrome quickly became perceived as a disease of cultural incantation, the patients seen as suggestible individuals under temporary hypnosis, a kind of cult.

~~~CFIDS patients have been pushed underground not only by the circumscription of illness, but by jeering criticism about the legitimacy of their diagnosis. If a simple writing style can predict incidence of neurological decay, as the Alzheimer's study suggests, what other roles might language play in illness and its public perception? As Western doctors banter around terms such as "cell memory," attributing a personality to the organs, and Eastern medicine influences our notions of the emotional qualities of the viscera, stories indeed play a growing role in our understanding of body processes. Can hateful words rallied against a disabled population, like the hypothesized infrasonic damage from an earthquake miles away, cause physical injury? Can the story of an illness be properly told when its sufferers can only speak or write in halting sentences, or when they are too sick to communicate outside of their own homes? Can writing about physical ailments, as one study in the Journal of the American Medical Association suggests, actually help lessen the severity of a patient's symptoms? Stricken is not only a collection of literary writings about the CFIDS epidemic, but a critique of the mythology and language surrounding an illness population and a collection of its untold stories.

~~~Stricken comes at the crux of some riveting literary and political trends. The man versus nature narrative has become increasingly popular at the turn of the millennium, with best-sellers such as Into Thin Air and The Hot Zone. Meanwhile, with the rise of the trash psychology of TV talk shows, laypeople have endowed themselves with diagnostic power and spoken out loudly against the CFIDS population. Rush Limbaugh, The Wall Street Journal, and even the government's appointed expert on CFIDS, Steven Straus, have all taken insensitive potshots against those stricken with this disease. Nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years, hysterical paralysis.

~~~Ultimately, despite the strict diagnostic parameters that left little doubt about the devastation of CFIDS, the portrayal of the illness degenerated into name-calling. The yuppie flu tagline for CFIDS, which emerged in the 1980s, paved the way for 1990s decrier Elaine Showalter, a Princeton feminist literary critic with a self-proclaimed love of bargain shopping. Safely out of the clutches of Susan Sontag's Illness As Metaphor, which forced literary scholars to examine the way cultural metaphors distort true suffering, Showalter found her sale of the century in CFIDS, a disease swarming with inaccurate metaphors and simplistic cultural interpretations. Her 1997 book, Hystories: Hysterical Epidemics and Modern Media, called CFIDS one of the major hysterical epidemics of the late Twentieth Century. After an extensive book tour that included talk show spots and supposed death threats that seemed to boost her public credibility, Showalter was named president of the prestigious Modern Languages Association. This seemed a startling accolade for a professor who based her own scholarship almost entirely on popular magazine articles, yet critiqued the way people mimic pop culture by embodying accounts of illness.

~~~A prevalence study released by the Centers for Disease Control in 1998 announced that the incidence of CFIDS is now higher than that of lung cancer, breast cancer, or HIV infection in women, but CFIDS had already been stricken from the goverenment's agenda. Government official William Reeves took a surprising turn that year, declaring under the immunity of the "whistle blower's act" that most government CFIDS funds had been diverted into other accounts. In fact, an internal audit found that the CDC spent a large percentage or its already paltry CFIDS funding, from 1995-1998, on other diseases, then blatantly lied to Congress about these misappropriations. Only a total of $23 million was allocated for CFIDS to begin with, an astoundingly meager sum for an illness of this magnitude. Only $9.8 million of these funds were spent on CFIDS in a period during which Kenneth Starr spent $40 million of taxpayers' money to prove that one American president had sex with an intern. The myopia of this fiscal distribution, in the face of an epidemic that could cripple the economy and public health, is astounding. William Reeves stated on CNN that this funding fiasco "probably set us back three to five years" in terms of government research and programs. Although worldwide researchers were on the brink of breakthrough discoveries and potential diagnostic tests, and advocates were fighting hard for a more legitimate name for the illness, the government had even cancelled its funding for the first federally sponsored research into pediatric CFIDS.

~~~At the turn of the millennium, the public still lacks a real grasp on what CFIDS patients are dealing with. Because of illusions that CFIDS is simply a disease of tired people, and not one that has left Olympic athletes such as Michele Akers, Inga Thompson, and Amy Petersen immobilized, the public has been largely deprived of accurate information. As notoriously energetic jazz pianist Keith Jarrett, also stricken with the illness, put it, "It's stupid to call it Chronic Fatigue Syndrome. It should be called the forever dead syndrome." One thing is certainly deceptive: CFIDS patients rarely look as sick as they are. Dr. Mark Loveless, an infectious disease specialist, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death." People react to such severity with disbelief. How, they query, could it be so bad if we haven't heard about it? I would argue that the debilitating nature of the symptoms creates the pervasive silence, paving the way for a mythology that has haunted the illness since its inception.

~~~Excerpted from the Introduction to Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, by Peggy Munson, copyright The Haworth Press and the author. Cannot be reprinted without permission.

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