Copyright 2024 Hillary Johnson. All Rights Reserved.
Something that has always stood out to me is the way a few academics who are removed from the gritty reality of myalgic encephalomyelitis have felt free to dismiss ME by vilifying those who suffer from it. Typically, they have done so under the guise of performing a public service and with assurances that they mean no harm to those they are harming. Without exception, their theories have no scientific underpinning whatsoever. They invade complex territory without regard for established fact, nevertheless posturing as big thinkers who have shed light on a mystery. To me, their forays into ME territory end up looking like opportunism.
The first amendment of the American constitution allows freedom of speech. Free, that is, unless you decide to shout “fire” in a crowded theatre when there is no fire, to cite one famous exception. The first amendment underpins democracy. These poseurs are free to publish whatever they want, anywhere and any time. Fortunately, anyone is equally free to disagree.
In April of 1997, I was invited by CNN to debate Princeton English professor Elaine Showalter, one such academic, on the network’s show Crossfire. I came across a video of that edition of Crossfire tucked away in the deepest recesses of my computer recently. My performance could have been better, but I decided to post the video anyway. For those who weren’t around in that era, this “debate” provides a window into the tenor of the times.
Showalter had just published a book claiming that people suffering from ME were hysterics caught up in a mass delusion comparable to devil worship or alien abduction. She claimed Gulf War syndrome sufferers and people with multiple chemical sensitivities were similarly delusional. The name of her book said it all: Hystories: Hysterical Epidemics and Modern Culture.
In her way, Showalter did Stephen Straus one better. Straus, the NIH’s expert on ME at the time, was insisting patients were mentally ill. Showalter proposed they were on equal footing with members of satanic cults. According to Showalter, their hysteria derived from being inundated with media coverage of the (imaginary) disease.
Showalter had thrown her hat in the ring with Canadian Edward Shorter, a pop historian in NIH’s pocket. He was paid to write a book lauding NIH’s accomplishments as a companion to a PBS documentary about the history of NIH. Next, he published From Paralysis to Fatigue, A History of Psychosomatic Illness in the Modern Era. Shorter was also the first guest lecturer NIH’s Brian Walitt invited to address NIH scientists as they were about to embark on the study of seventeen ME patients—you know, the study that took nine years? Walitt defended Shorter as “distinguished” when patients complained.
Showalter’s follow on book came five years later. It’s hardly a stretch to imagine that both Shorter and Showalter were influenced by the UK’s psychiatrist Simon Wessely, an outspoken and long-time proponent of the psychiatric theory of ME. Wessely set the bar for defaming ME sufferers in ways that psychiatrists and the rest of the medical establishment would never do to the truly mentally ill.
Showalter’s book was at bottom a retread of the arguments I had heard during the preceding decade from Wessely, Shorter, Straus and their compatriots—men who together had alternately bedazzled and terrorized citizens of at least three countries with their ideas. The difference was that I had never known any of these misogynists to insist ME patients’ delusions of ill health were equivalent to, say, claims of alien abduction. Showalter had ratcheted the hysteria myth to a new level of absurdity.
In addition, her reputation as a feminist was puzzling, given that she surely knew a majority of people who suffered from ME were women. Soon after she published “Hysteries,” I noticed, she wrote an essay for Vogue confessing to an obsession with cosmetics and clothes.
That Showalter’s book was taken seriously by anyone, including CNN, speaks volumes about this period, when it seemed that anyone, from any walk of life, could take on “CFS” and interpret the epidemic that began in the mid-1980s in whatever way they pleased and get a hearing. The U.S. federal health agencies stood idly by while these left field arguments played out in public. The only push back came from patients themselves.
Showalter's book signings had been disrupted by protesters. Yet Hysteries continued to receive coverage, fueled, in part, by the very resistance its author encountered.
In the midst of that coverage, Crown’s publicity department called to say CNN had invited me to appear with Showalter on Crossfire. The show was famous for erupting like an adolescent food fight, with hosts talking over guests and each other, and frustrated guests blowing up at their sparring partners. It had been home to numerous hosts from Newt Gingrich and Tucker Carlson on the right, to Van Jones and James Carville on the left.
No matter who was hosting, the format seemed designed to guarantee verbal mayhem. The putative “liberal” guest was unable to address or be questioned by the liberal pundit. Instead, the rightist pundit lobbed questions at the leftist guest and the leftist pundit lobbed questions at the rightist guest. Nor could guests address each other directly. Crossfire was a little like Survivor if that show were compressed into twenty-two minutes.
In fact, Crossfire was cancelled in 2005, not long after comedian John Stewart, a guest, tore into the format and the hosts. When liberal host Paul Begala defended Crossfire, calling it “a forum for debate,” Stewart shot back, "That’s like saying pro wrestling is a show about athletic competition."
In 1997, the hosts were liberal journalist Bob Beckel, and the Republican Lynne Cheney, whose husband Dick later served as George Bush’s vice president.
The prospect of a confrontation with Showalter left me cold. My nervous system felt shot from the events of recent years, which included my own twenty-two city book tour, which was simultaneously accompanied by a full-out assault on my book by government scientists aligned with powerful, well-funded interests in the private sector.
Nevertheless, a friend chastised me, I had been given an opportunity—I needed to make an effort to counter Showalter’s argument. With foreboding and a misplaced sense of obligation, I agreed to the debate.
I asked CNN to send a town car directly to my door two hours away and deliver me to the studio in Manhattan. After the taping, it would return me to my home again. At lest the physical effort would be minimal. A white stretch limousine driven by a friendly, twenty-something woman in a gray uniform, looking like a cadet from nearby West Point, inched up my narrow drive at the appointed hour.
I was surprised when Showalter entered the closet-sized studio at CNN with a well-worn copy of Osler’s Web in one arm. The book’s pages were thick with Post It notes in an array of colors. I recall wondering if her critique of Osler’s Web was so intricate she had devised a color code. As things turned out she never had a chance to crack the book.
Although her comment didn’t make it into the edited show, Showalter announced at mid-point in the scrum that she had purposely avoided looking at the scientific literature about ME because she didn’t want to “bias” herself. Her comment that literature I cited was unreliable made it into the broadcast.
Afterward, in her own version of events, Showalter described her book tour for Hysteries in a light-hearted story titled My Year of Living Dangerously, for the London Review of Books. Writing about her Crossfire experience, she wrote,
“In New York the next morning, I ended the tour with an appearance on Crossfire, a public-affairs programme on which two antagonists duke it out, each with her very own hostile interviewer; as a friend remarked, it’s like being locked in a room with your own rabid dog. I debated Hillary Johnson, whose book Osler’s Web, argues that the Government has tried to cover up the world pandemic of chronic fatigue syndrome. Despite the gibes of my interviewer, Bob Beckel, I did pretty well, but then Hillary had a hard time explaining why, if she was carrying a deadly infectious disease, she was running around doing TV shows.”
Live by the sword, die by the sword.
In all her work, Showalter delighted in attempts to prove ME patients were faking illness in an effort to support her hypothesis. In the past, she had taken a swipe at Mary Schweitzer, a former academic herself who has been mostly wheelchair bound with ME since the 1980s. Showalter posted a photo of Schweitzer, upright, at a demonstration for ME in San Francisco in that decade, her fist raised.
It’s one of the problems with ME: fantasists like Showalter identify your superhuman efforts simply to show up—efforts that destroy you for months afterward—as evidence of your duplicity.
Between Lynne Cheney’s predictable suggestions that the symptoms were so common that everyone probably had the disease, and that I was a conspiracy nut, and the unflappable Showalter pointing out that ME sufferers’ obsession with the name “chronic fatigue syndrome” was among those symptoms, I felt jangly. During the long ride home, I mused on why a fact-free book like Showalter’s, with as much depth as a handful of popcorn, was being taken seriously.
A tendency to abandon logic and reason when it comes to emerging diseases in this country existed in 1997 and I think exists today. Beyond that, Lynne Cheney’s assumption that federal health agencies are hyper-benevolent—somehow immune from corruption and flaws that we readily acknowledge throughout the rest of government—reflects a longing to confer authority and something close to autocracy to agencies charged with protecting life and health. These agencies have the trust of the public and they engage in boosterism to protect that trust with layers of public affairs officers and money. NIH’s shameless lie that its February report on ME is the first research to have found biological abnormalities in ME, as if the decades of concerted research before counted for nothing, is typical.
What an excellent read, thank you. This resonates through my life and family relationships:
"...identify your superhuman efforts simply to show up—efforts that destroy you for months afterward—as evidence of your duplicity"
Hillary, I think you did a great job debating this crazy woman. I would have personally lost it on the show with what she and Lynne Cheney were suggesting/saying. How dare they infer a mental illness. My own sister is in the field of psychiatry and even though I'm showing her evidence of my (and my husbands) deficient immune system, my brain lesions, etc., she keeps suggesting that I'm just depressed! It makes me so infuriated. I believe that what you're saying about the NIH/CDC is so true in that they absolutely didn't want to panic the public and/or admit that they've lied to the public. Thank you again for sharing this. I wish you could be interviewed on a show like 60 minutes to keep the public aware. The public is (as I previously was) clueless as to what the disease is and the severity of it.