The Panic Virus

by Seth Mnookin; Dan B. Miller

  In the months after Leitao’s media blitz, doctors across the country received an influx of patients convinced that they, too, suffered from Morgellons. Many of these claims were dismissed out of hand, but there were sympathetic practitioners who ran sophisticated tests in an effort to figure out what was going on. Time after time, those tests came back with similar results: Patients didn’t have any fibers in their festering sores, or the fibers they did have were readily identifiable as coming from clothes or household fabrics. Common psychological ailments also cropped up repeatedly: Some Morgellons patients were found to have paranoid delusions that caused them to literally peel the skin off their bodies, while others’ conditions were either caused or worsened by drug addiction or severe stress. All the while, coverage of the condition continued unabated: In October 2006, Stricker was the sole non-Morgellons patient who unconditionally recognized the disease in a New York Times article that claimed, “Doctors themselves are divided over whether Morgellons is a medical or a psychiatric illness.” That was true only in the sense that scientists are divided over evolution: There was a tiny group operating on the fringe who held one view, while the vast majority, and the vast majority of evidence, lined up on the other side.

  While news outlets were remiss in not enumerating the major caveats that attended Morgellons, a growing body of research suggests that merely reporting on the supposed condition, regardless of the context, might have been all that was needed to give it legitimacy. In a 2007 study, researchers at the University of Michigan presented subjects with a pamphlet titled “Flu Vaccine: Facts and Myths.” The flyer listed common perceptions about the vaccine and labeled each as either true or false (e.g., “The side effects are worse than the flu: FALSE”). After studying the sheet, subjects were quizzed on its contents. In the first round of questioning, conducted only a few minutes after the pamphlet was taken away, people generally fared well separating the myths from the facts. But as more time elapsed, subjects were less and less able to correctly identify the myths, although they were still able to remember the contents of the pamphlet itself—and, since they’d been told that the information came from a credible source, they began to assume that all the statements they’d heard were likely true.

  On January 20, 2008, the Washington Post’s weekend magazine ran a 7,200-word cover story on Morgellons disease by Metro reporter Brigid Schulte. The story began with a lengthy description of Sue Laws, a suburban housewife whose life was shattered one afternoon in October 2004 when she was overcome by a sensation akin to thousands of bees simultaneously stinging her and burrowing under her skin. By the time Laws’s husband responded to her screams, Schulte wrote, countless numbers of microscopic red fibers were poking out of her back. The pain was at its worst at night: The bugs, Laws said, were more active in the dark. In an effort to diminish her agony, she began sleeping with the lights on. She also started showering for hours on end, coating her skin with baby powder, soaking in bathtubs full of vinegar, and washing her sheets in ammonia. Eventually, Laws’s hair began to fall out and her teeth began to rot—and still, the shimmering red, black, and blue fibers kept popping out of her skin.

  According to the Post, the medical establishment didn’t offer Laws any help; when doctors did acknowledge her pain, they inevitably said it was the result of a mental illness. “In time, Sue, 51, came across a condition like her own, and joined 11,036 others from the United States and around the world who, as of earlier this month, had registered on a Web site as sufferers of what they say is a strange new debilitating illness.”

  It wasn’t until sixteen paragraphs later that the story acknowledged that contemporaneous records kept by Laws’s longtime personal physician documented her drinking up to thirty cups of coffee and smoking three packs of cigarettes a day. (Laws told the Post her doctor was exaggerating by approximately 600 percent.) The story did not describe how nicotine, in addition to raising metabolism, releases epinephrine—also known as adrenaline—or how caffeine prolongs the effects of epinephrine in the system. It also did not inform readers that one of four recognized caffeine-induced psychiatric illnesses is caffeine intoxication, which is caused by “recent consumption of caffeine, usually in excess of 250 mg (e.g., more than 2–3 cups of brewed coffee),” or that one symptom of severe caffeine withdrawal is psychomotor agitation, which can include pulling one’s own skin and biting one’s lips until they bleed. Finally, while the Post article did tell readers that the onset of Laws’s Morgellons coincided with the diagnosis of her twenty-year-old son with a fatal brain tumor, it didn’t tell them that psychomotor agitation is also a well-documented symptom of severe depression.

  In the coming pages, Schulte described more “Morgellons sufferers,” many of whom had “lost their jobs, their homes, their spouses and even had their children taken away because of the disease.” There was Pam Winkler, a Bel Air housewife who said Morgellons had exhausted her to the extent that she turned to cocaine and the narcolepsy medication Provigil just to stay awake. (Both her husband and her doctors were of the opinion that Winkler’s cocaine addiction preceded her self-diagnosis and that she was just looking for attention. Winkler’s response? “You know me. I’m a shallow person. I’m vain. Do you think I’m doing this to get attention? If I wanted attention, I wouldn’t look this skanky. I’d get boobs.”) There was the former Miss Virginia who spent eight hours a day picking fibers out of her skull, the grandmother who refused to see her children for fear of infecting them, and the patients with worms coming out of their eyeballs and flies emerging from their lungs.

  On their own, each one of those stories might sound outlandish, but, Schulte implied, who was she to pass judgment? For that matter, why should anyone have faith in the so-called authorities who claimed the disease didn’t exist? After all, Schulte wrote, “Western medicine has been guilty of closed-mindedness in the past. There is even a name for it: the Semmelweis Reflex, the immediate dismissal of new scientific information without thought or examination. It was named for a 19th-century Hungarian physician who was roundly vilified by his colleagues when he asserted that the often-fatal childbed fever could be wiped out if doctors washed their hands in a chlorine solution. He was right.”22

  Two days after her article ran, Schulte took part in an online chat with readers. “I went into this article with a completely open mind,” she said. “I reported what I found. . . . I think it’s pretty clear there are still questions out there that need to be looked at and answered.” When one reader asked Schulte why she’d left out details such as Savely leaving Texas after her treatment methods were questioned by the Texas Board of Nursing, Schulte replied, “That is a whole separate, controversial topic that I touched upon in the story but would have taken it in a different direction to explore in more detail.” (In fact, while Schulte wrote that Savely’s clinical approach was controversial, there was no mention of her problems with Texas medical authorities.)

  By that time, the affliction Mary Leitao had created in response to what she viewed as mistreatment by medical authorities had been officially recognized as a potential public health crisis. Just as reporters had been quick to respond to the Morgellons Research Foundation’s bait, politicians jumped at the opportunity to support a cause that had single-minded, passionate advocates on one side and no obvious or organized opposition on the other. More than three dozen members of Congress, including Hillary Clinton, Barack Obama, and John McCain, urged the CDC to investigate Morgellons. Some went further: California senator Barbara Boxer wrote a total of seven letters to the agency, while Iowa’s Tom Harkin inserted language into a Health and Human Services bill that called for “this important research” to be undertaken “as quickly as possible.”

  The CDC, whose budget is determined by Congress and the president, had no choice but to acquiesce, and for perhaps the first time in its history it agreed to fund a widescale study into a condition that doctors and scientists overwhelmingly agreed didn’t exist. In a statement announcing a study that will cost mil
lions of dollars to complete, the agency said that “an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media” led to its agreeing to look into “an unexplained skin condition.” To this day, there has not been a single independently verified case of Morgellons syndrome.23

  20 Scabies, a highly contagious disease in which parasitic mites cause intense itching, rashes, and infections, is an example of a nondelusional parasitosis.

  21 Schwartz began treating Morgellons patients after hearing about the disease on Coast to Coast, a nationally syndicated AM radio show with a heavy emphasis on UFOs and conspiracy theories. In 2005, an article in The Santa Fe New Mexican described Schwartz’s treatment of both Morgellons and heroin addiction, which often took place in a room at a local Red Roof Inn. One of Schwartz’s patients told the New Mexican that she couldn’t remember many details from the three days she spent in the motel under Schwartz’s care because Morgellons made her suffer from “brain fog.” In 2006, Schwartz’s license to treat patients was suspended; two years later, he agreed to “not practice medicine or seek an active license to practice medicine anywhere in the United States, now or in the future.”

  22 This rhetorical sleight-of-hand, which is sometimes referred to as the Semmelweis Stratagem, is a variation on the Galileo Gambit, whereby someone whose work is debunked argues that the fact that Galileo’s work was also debunked proves he is actually correct. Semmelweis is frequently invoked by anti-vaccinationists. While explaining to me why the “mainstream” ignored Andrew Wakefield, one of his supporters and financial backers said, “We know there’s never been a time in history when people, in a short period of time, have looked at the data and thought, ‘Oh, we do have a problem here,’ or even, ‘We might have a problem here—maybe you should wash your hands after you dissect bodies and before you go deliver babies.’ God forbid you should wash your hands!”

  23 The CDC’s “Unexplained Dermopathy Project” began in January 2008 with an epidemiologic study conducted by—and this is a mouthful—the National Center for Zoonotic, Vector-borne, and Enteric Diseases’ (NCZVED) Division of Parasitic Diseases (DPD). In September 2009, the DPD put together an external review panel to review the study’s findings and advise about the best course of action. As of October 2010, the panel had not released its final report.

  Part Two

  CHAPTER 8

  ENTER ANDREW WAKEFIELD

  The 1990s was not a good decade to be a public health official in the U.K. In September 1992, British officials ordered the withdrawal of the two most widely circulated brands of the MMR vaccine after the mumps component was shown to cause a mild form of meningitis in a tiny fraction of recipients (estimates ranged from one in six thousand to one in eleven thousand). The fallout from that decision provided yet another illustration of the government’s impotence to counter media-fueled scares, as nothing tempered the panic that followed the announcement—not the fact that the symptoms of the vaccine-induced meningitis were limited to bouts of fever, vomiting, and “general malaise”; or that one in four hundred of those infected naturally with mumps came down with a much more severe form of meningitis; or that in 1988, the year the single-dose MMR vaccine was introduced in Britain, there were 86,000 cases of measles and six deaths, and in 1991 there were ten thousand cases and no deaths. Within twenty-four hours of the announcement, the government, according to a story in The Daily Mail, was facing “a welter of legal demands from parents who claim their children were damaged” by the vaccine.

  Less than two years later, before the repercussions of the mumps vaccine scare had fully receded, Britain found itself facing a potential measles epidemic. In the first half of 1994, there were close to nine thousand reported cases of measles infections, which was twice as many as there’d been the year before. The most alarming thing about that spike was that many of those infections were in older children, for whom the disease was likely to be more severe. With epidemics in Great Britain historically occurring every five to seven years, the World Health Organization warned of an outbreak that had the potential to infect hundreds of thousands of children and cause thousands of cases of blindness, deafness, brain damage, and death. That July, as measles infections continued to rise, Kenneth Calman, the government’s chief medical officer, announced that a £20 million effort to vaccinate seven million schoolchildren would begin in the fall. (Officials, mindful of the mumps vaccine scare, decided to include only measles and rubella in the shots distributed as part of the campaign.) Well aware of the need for positive publicity, Calman dedicated a good portion of that money to television and print advertisements that would highlight the dangers of measles infections. Calman also sent a letter to every doctor in the country, outlining the details of the campaign.

  Those efforts proved to be for naught. As soon as vaccinations began in September, the program was attacked by parents complaining that they hadn’t been kept sufficiently informed about the program. The media, while quick to cover any unease—one typical headline read, “Why Another Needle, Mummy?”—was much slower to examine the accuracy of speculative concerns. In the coming weeks, the news only got worse. Ampleforth and Stonyhurst, two of Britain’s most prestigious Catholic schools, announced they were boycotting the campaign because the vaccine had been developed in part with tissue from aborted fetuses; days later, Muslim leaders said that they were opposed to the shot as well. In London, a group of homeopaths set up something called the Disease Contacts Network, through which parents could pay to receive notification of outbreaks so that they could deliberately facilitate the infection of their children. “Then,” The Independent reported, “all they have to do is party. The theory is that naturally acquired disease confers immunity for life, and that if caught when children are between about five and nine, the illness itself is likely to be less severe.” The fact that this theory was total rubbish went unmentioned.

  The government’s campaign also spurred the growth of a citizen-led anti-vaccine movement similar to the one that had taken root in the United States a dozen years earlier. Jackie Fletcher, a suburban housewife who lived about twenty miles outside Manchester, quickly established herself as the movement’s de facto spokesperson. In many ways, Fletcher’s story resembled that of her American equivalent, Barbara Loe Fisher: According to what Fletcher told reporters, her son, Robert, had been a “healthy, one-year-old boy” until he received an MMR shot a year and a half earlier. Soon after, Fletcher said, he began having the seizures that eventually led to diagnoses of everything from encephalitis and epilepsy to speech and learning disabilities. Fletcher first became convinced of the connection between her son’s illnesses and vaccines when, during one of Robert’s frequent trips to the hospital, she met another mother who said her son had also gotten sick not long after receiving his MMR jab. There was no way, Fletcher decided, that those similarities could be mere coincidence. Working with her Community Health Council, she placed ads in local papers in an effort to locate other parents who believed their children had also been injured by vaccines. Several dozen responded, and in December 1992, Fletcher founded Justice, Awareness, and Basic Support—JABS, for short—which she described as a group dedicated to protecting Britain’s children.

  To accomplish this, Fletcher embarked on a strategy that combined public campaigning with legal maneuvering. When Britain’s Legal Aid Board approved funding for investigating MMR injury claims, Fletcher was ready with a list of hundreds of families willing to consider taking part in a class action lawsuit against vaccine makers. Soon, she was working with a solicitor named Richard Barr as he coordinated families’ cases and fed stories to the press. From the outset, Barr claimed that the government’s withdrawal of some versions of the mumps vaccine was evidence that the other two components of the MMR vaccine were dangerous as well: “[O]ut of 170 cases [Barr] has details of, most showed side-effects 14 days or sooner after the MMR vaccination,” The Economist wrote in its October 29, 1994, issue. “That is t
oo soon to have been caused by the mumps virus but plausibly the result of the measles component.” (Unlike many publications, The Economist made clear that “little published data supports this case.”)

  For more than a year, Fletcher and Barr used the media to keep the specter of a massive lawsuit alive. In late 1995, Fletcher told reporters that JABS had assembled a list of dozens of children who had fallen ill as a result of the previous year’s “government mass-vaccination campaign.” According to one typically credulous account, many of the families considering legal action had children who’d “contracted debilitating, crippling and, in some cases, life-threatening diseases.” (The coverage was at times unintentionally humorous: The headline on a Daily Mirror story read, “My Son Went Bald After His Measles Jab; Mirror Health on How a Simple Injection Has Changed a Young Boy’s Life Forever; Doctors Say His Hair May Never Return.”) At the time, it wasn’t clear how these threatened vaccine-related lawsuits would proceed: Since 1979, the only outlet families in the U.K. had had to recover damages was the Vaccine Damage Pay Unit, where the burden of proof was high and compensation was capped at £30,000. In late 1996, Barr let the press in on his legal strategy: He was going to use the Consumer Protection Act, a European Union law that established no-fault liability, to sue the pharmaceutical companies directly.

  Barr and Fletcher both knew that would not be an easy feat. As Fletcher’s husband, John, told The Guardian, “[The pharmaceutical companies] say prove it and argue that it was coincidental.” In order to establish cause and effect, the Fletchers would need more than stirring anecdotes—they’d need something that looked like scientific proof. As it turned out, they’d already begun collaborating with a researcher who would provide them with that very thing.