J William M Tweedie
Well-Known Member
Andrew Scull, PhD
June 18, 2015
In late March, the singer Joni Mitchell was found unconscious at home and rushed to a Los Angeles hospital. In celebrity-obsessed Tinseltown, this was front-page news.
Fortunately, Mitchell recovered quite rapidly, but her hospitalization brought to mainstream attention a hitherto obscure ailment that has been dubbed "Morgellons disease." Sufferers report intense itching, a sensation that something is crawling under their skin, and lesions that will not heal, and that fibers extrude from their sores. Often, these mysterious chronic symptoms are accompanied by listlessness, chronic fatigue, and problems with memory and concentration.
Middle-aged white women seem particularly prone to the condition, and among those afflicted with it, the usual suspects are invoked to explain what is going on: an autoimmune disease; Lyme disease; environmental pollution; viral infections; or that all-purpose bogey that circulates in some circles, the side effects of vaccines.
A decade or so ago, the Charles E. Holman Morgellons Disease Foundation was established "to play an integral role in spreading the understanding of Morgellons Disease to others." The foundation, and those suffering from the syndrome, face an uphill battle.
Mainstream medicine is dismissive. In 2012, the Centers for Disease Control and Prevention (CDC), in partnership with Kaiser Permanente of Northern California, published the results of a careful study[1] of what they called "an unexplained dermopathy." The authors acknowledged that those who claimed to be suffering from Morgellons disease had "a significantly reduced health-related quality of life," but they rejected the claim that their suffering had any somatic cause, infectious or otherwise. The mysterious fibers, they found, were most likely composed of cotton that stuck to the sores created when the patients repeatedly scratched their skin.
The researchers could find no evidence of bacterial, fungal, or parasitic infection, and concluded that Morgellons was instead a psychiatric disorder, "similar to more commonly recognized conditions, such as delusional infestation" (an unshakeable yet erroneous delusion that one's skin is infested with bugs or parasites). The CDC pronounced the issue closed as far as it was concerned, archived the study for historical purposes, and declined to take matters any further.
The Morgellons community has not been amused, to put it mildly. They denounce the medical establishment in harsh terms (a representative headline is "CDC Creeps Formally Call Morgellons An Hallucination"), and many invoke conspiracy theories to explain findings they cannot accept. The idea that they suffer from a psychiatric condition, not a "real" physical illness, is anathema to them, and websites have proliferated to advance the cause.
Victims travel from doctor to doctor seeking validation that their condition is "real." A handful of physicians have accepted their claims and are embraced by the community, who rush to be treated by them and to cite their opinions—the only problem being that some proffer antifungal therapies and others antibacterial or antiparasitic pills, whereas still others urge a regimen of "natural" foods and detoxification via the wonders of colonic irrigation. Adding to the sense of confusion, these medics' theories of what precisely is organically wrong run the gamut, with their only common feature being an insistence that the disease has organic roots.
"The Napoleon of the Neuroses"
For a medical historian, the whole debate is an example of déjà vu all over again. Over the past three centuries, in particular, there have been many examples of similar squabbles. And although it has become fashionable to denounce an imperialistic medical profession, the reality is that very often it is bands of sufferers who combine to insist on the reality of their troubles, and to search out compliant physicians who will validate their claims.
The language of "nerves" had begun to enter medical discourse in the late 17th century. Gentlemen, and especially ladies, of quality in the years that followed swiftly adopted the new language, which claimed many converts. As George III, the last king of North America, began to lose his wits, he famously informed anyone who would listen that "I'm nervous. I'm not ill, but I'm nervous; if you would know what is the matter with me, I am nervous." But he wasn't. He was mad.
Other wealthy sufferers had less serious troubles that did not condemn them to the tender mercies of the "mad-doctors." Decades before the king became insane, the nervous ladies and gentlemen of fashionable London had found a champion in the transplanted Scottish physician, George Cheyne, who pronounced their ailments to be as real as smallpox or fever.
Molière might dismiss such complaints as Le Malade Imaginaire—a view shared by many of Cheyne's professional competitors, and common among the public at large. But the Scot's flattery of his patients—nervous complaints, he insisted, were to be found almost exclusively among the most refined and successful, whose nervous systems were equally delicate and refined—was combined with an equally confident claim that they deserved the dignity of the sick role, not the opprobrium meted out to counterfeits and frauds. Cheyne's reward was a doubling and tripling of his practice, as dukes, bishops, lords and countesses flocked to his consulting rooms.
A century and a half later, tout Paris was drawn to the weekly lectures, the leçons du mardi, offered by the man who reveled in the title of "the Napoleon of the Neuroses": Jean-Martin Charcot. Charcot had built his reputation as a neurologist on his skill at delineating a whole string of debilitating neurologic disorders: disseminated multiple sclerosis, aphasia, amyotrophic lateral sclerosis (better known to most Americans as "Lou Gehrig disease"), Tourette syndrome, chorea, locomotor ataxia (a complication of tertiary syphilis, as would become apparent in the early 20th century), and so on. But what drew his audience to his lectures was not these unfortunates, but another sort of patient—those suffering from what became the iconic disease of the late nineteenth century, hysteria.
Hypnosis and Hysteria
Most French physicians were loathe to admit hysteria to the status of a legitimate disease. It was a wastebasket category. Its alleged victims, as most medical men saw it, were parading their deceit and acting out a shameful falsehood while demanding to be recognized as genuinely ill. It was a status Charcot marshaled his prestige to grant them. Hysteria, he insisted, was an organic disease, just like the other neurologic ailments he had discovered. His primary therapy for his patients was to mesmerize them—or rather, to hypnotize them, as the treatment had been relabeled. (Mesmer had long been dismissed by his medical brethren as a charlatan and a fraud.)
At first blush this was odd, because the hypnotic trance was surely a form of psychological intervention or manipulation. Not so, Charcot countered. Hypnotism only worked with the susceptible, and that susceptibility in its turn reflected their biological defects.
As for the audience—male and female, demi-mondaine and ultra-respectable haute bourgeoisie alike—it was these hypnotized patients that they had come to see. The hysterics created and recreated the spectacle and circus: Scantily clad young women disported themselves on the lecture platform in unmistakably erotic and sensual poses, responding obediently to the commands of the somber, gray-coated master of ceremonies, the great Charcot himself. Masculine dominance and female foolishness were equally on display.
Charcot's insistence on the neurologic reality of hysteria did not long survive his death. Even his own disciples swiftly turned on the now safely silenced bully who had cowed any dissent. Shame-faced (or not), they dismissed the whole exercise as a sham and an exercise in delusion and folly.
Hysteria lingered, however, now passing into the hands of a Viennese doctor who had journeyed to Paris to study at Charcot's feet, and who now began to advance a thoroughly psychological theory—not just of the origins of hysteria, but of other neuroses as well. Indeed, in the end, he ended up offering a theory of human psychology tout court, one that saw madness and sanity as a continuum, not as discrete entities. As he did so, Sigmund Freud abandoned hypnosis for a more elaborate "talking cure," embarking upon his famous embrace of free association on the psychoanalytic couch as the road to exploring and rearranging the unconscious. Remarkably, and unusually, patients did not desert him.
Three quarters of a century later, psychiatry deserted hysteria. Or rather, the new official Bible of psychiatric diagnoses, the third edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-III), could find no place for hysteria in its elephantine array of disorders. Relentlessly shifting back to a biological model of mental disorder, the bulk of the profession shuffled this embarrassing relic of what it saw as an embarrassing embrace of psychodynamic accounts of madness off the stage. Mental illness, its acolytes insisted, was biological and nothing but. If hysteria didn't fit this profile, so much the worse for it. It could no longer be accorded the legitimacy of an official disease label.
Making Sense of Morgellons
Where has all the hysteria gone? One suggestion, fiercely resisted by its sufferers, is that it (or some portion of what was once labeled "hysteria") has undergone a metamorphosis and reemerged as that cluster of mysterious ailments variously referred to as "chronic fatigue syndrome," "fibromyalgia," "neuromyasthenia," "postviral fatigue syndrome," or sometimes as "myalgic encephalomyelitis" (often shortened to its perhaps unfortunate acronym, ME). Skeptics for a time preferred the derogatory term "yuppie flu."
Like Joni Mitchell's Morgellons disease, these ailments (assuming that the disparate labels refer to the same thing) occupy a highly ambiguous status in the medical firmament. Once again, there are no characteristic laboratory abnormalities that serve to identify cases of ME or chronic fatigue syndrome, and many are inclined to doubt the disease's physical reality, suggesting rather that it is a form of psychiatric disorder. No obvious and uncontested biochemical or metabolic abnormalities correspond to patients' subjective symptoms. Nor does this condition correspond to any known neurologic disorder. Sufferers complain of muscle pain, persistent headaches, unrefreshing sleep, sore joints and throats, impaired memory and generalized malaise, not to mention impaired ability to think and to concentrate—and even this extensive list fails to include the full panoply of symptoms some patients experience.
What are we to make of it all? It is clear what those complaining of these syndromes want. Bitterly, the fatigued denounce their critics, the worst-placed rattling their wheelchairs in lieu of shaking their fists, accusing doctors of being "lamentably ignorant of the most basic facts of the disease." Proudly they rededicate themselves to what one of the targets of their ire, the British psychiatrist Sir Simon Wessely, has suggested that they consider: "the long uphill battle against ignorance and inertia."
Pesticides, hormones, chemicals, bacteria, viruses: Something must surely be responsible for these patients' suffering, and if modern medicine pronounces itself unable to oblige with a physical account of their troubles and proposes to ship them off to the tender mercies of the psychiatric profession, then they are off elsewhere. Off to self-help or to holistic practitioners, who are happy to display more sympathy and faith in the physical reality of their disorder, and to link it to the perils of civilization, only this time in the guise of a poisoned modern environment. Off to online support groups, where they can multiply their tales of woe and sense of grievance.
The verbally and sometimes (ironic as that would be) almost physically violent response of many of these patients to the suggestion that their symptoms are psychosomatic, or "all in their heads," is impossible to miss. Those who question their insistence that their disease is "real"—that is, rooted in the body—are deluged with abuse.
Wessely, for example, who was last year's president of Britain's Royal College of Psychiatrists, once worked extensively on chronic fatigue syndrome. Although he was willing to consider the hypothesis that viral or other unknown infections might initially trigger the disease, he proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life. His mail has had to be X-rayed, and at times he has had police protection. Not entirely surprisingly, he has ceased further research on the subject.
Dubbed by the tabloids "the most hated man in Britain," Wessely's experiences are testimony to how desperately many of the afflicted want a neurologic diagnosis. That diagnosis will validate the reality of their disorder, and legitimize their suffering. But the neurologists who have grown to professional maturity in the post-Charcot world evince little or no interest in their troubles. Pausing only long enough, in the most plausible of cases, to subject them to batteries of tests and scans before pronouncing them physically normal, they suggest these nuisances go to see a shrink. That, as we have seen, is the last thing these patients want.
June 18, 2015
In late March, the singer Joni Mitchell was found unconscious at home and rushed to a Los Angeles hospital. In celebrity-obsessed Tinseltown, this was front-page news.
Fortunately, Mitchell recovered quite rapidly, but her hospitalization brought to mainstream attention a hitherto obscure ailment that has been dubbed "Morgellons disease." Sufferers report intense itching, a sensation that something is crawling under their skin, and lesions that will not heal, and that fibers extrude from their sores. Often, these mysterious chronic symptoms are accompanied by listlessness, chronic fatigue, and problems with memory and concentration.
Middle-aged white women seem particularly prone to the condition, and among those afflicted with it, the usual suspects are invoked to explain what is going on: an autoimmune disease; Lyme disease; environmental pollution; viral infections; or that all-purpose bogey that circulates in some circles, the side effects of vaccines.
A decade or so ago, the Charles E. Holman Morgellons Disease Foundation was established "to play an integral role in spreading the understanding of Morgellons Disease to others." The foundation, and those suffering from the syndrome, face an uphill battle.
Mainstream medicine is dismissive. In 2012, the Centers for Disease Control and Prevention (CDC), in partnership with Kaiser Permanente of Northern California, published the results of a careful study[1] of what they called "an unexplained dermopathy." The authors acknowledged that those who claimed to be suffering from Morgellons disease had "a significantly reduced health-related quality of life," but they rejected the claim that their suffering had any somatic cause, infectious or otherwise. The mysterious fibers, they found, were most likely composed of cotton that stuck to the sores created when the patients repeatedly scratched their skin.
The researchers could find no evidence of bacterial, fungal, or parasitic infection, and concluded that Morgellons was instead a psychiatric disorder, "similar to more commonly recognized conditions, such as delusional infestation" (an unshakeable yet erroneous delusion that one's skin is infested with bugs or parasites). The CDC pronounced the issue closed as far as it was concerned, archived the study for historical purposes, and declined to take matters any further.
The Morgellons community has not been amused, to put it mildly. They denounce the medical establishment in harsh terms (a representative headline is "CDC Creeps Formally Call Morgellons An Hallucination"), and many invoke conspiracy theories to explain findings they cannot accept. The idea that they suffer from a psychiatric condition, not a "real" physical illness, is anathema to them, and websites have proliferated to advance the cause.
Victims travel from doctor to doctor seeking validation that their condition is "real." A handful of physicians have accepted their claims and are embraced by the community, who rush to be treated by them and to cite their opinions—the only problem being that some proffer antifungal therapies and others antibacterial or antiparasitic pills, whereas still others urge a regimen of "natural" foods and detoxification via the wonders of colonic irrigation. Adding to the sense of confusion, these medics' theories of what precisely is organically wrong run the gamut, with their only common feature being an insistence that the disease has organic roots.
"The Napoleon of the Neuroses"
For a medical historian, the whole debate is an example of déjà vu all over again. Over the past three centuries, in particular, there have been many examples of similar squabbles. And although it has become fashionable to denounce an imperialistic medical profession, the reality is that very often it is bands of sufferers who combine to insist on the reality of their troubles, and to search out compliant physicians who will validate their claims.
The language of "nerves" had begun to enter medical discourse in the late 17th century. Gentlemen, and especially ladies, of quality in the years that followed swiftly adopted the new language, which claimed many converts. As George III, the last king of North America, began to lose his wits, he famously informed anyone who would listen that "I'm nervous. I'm not ill, but I'm nervous; if you would know what is the matter with me, I am nervous." But he wasn't. He was mad.
Other wealthy sufferers had less serious troubles that did not condemn them to the tender mercies of the "mad-doctors." Decades before the king became insane, the nervous ladies and gentlemen of fashionable London had found a champion in the transplanted Scottish physician, George Cheyne, who pronounced their ailments to be as real as smallpox or fever.
Molière might dismiss such complaints as Le Malade Imaginaire—a view shared by many of Cheyne's professional competitors, and common among the public at large. But the Scot's flattery of his patients—nervous complaints, he insisted, were to be found almost exclusively among the most refined and successful, whose nervous systems were equally delicate and refined—was combined with an equally confident claim that they deserved the dignity of the sick role, not the opprobrium meted out to counterfeits and frauds. Cheyne's reward was a doubling and tripling of his practice, as dukes, bishops, lords and countesses flocked to his consulting rooms.
A century and a half later, tout Paris was drawn to the weekly lectures, the leçons du mardi, offered by the man who reveled in the title of "the Napoleon of the Neuroses": Jean-Martin Charcot. Charcot had built his reputation as a neurologist on his skill at delineating a whole string of debilitating neurologic disorders: disseminated multiple sclerosis, aphasia, amyotrophic lateral sclerosis (better known to most Americans as "Lou Gehrig disease"), Tourette syndrome, chorea, locomotor ataxia (a complication of tertiary syphilis, as would become apparent in the early 20th century), and so on. But what drew his audience to his lectures was not these unfortunates, but another sort of patient—those suffering from what became the iconic disease of the late nineteenth century, hysteria.
Hypnosis and Hysteria
Most French physicians were loathe to admit hysteria to the status of a legitimate disease. It was a wastebasket category. Its alleged victims, as most medical men saw it, were parading their deceit and acting out a shameful falsehood while demanding to be recognized as genuinely ill. It was a status Charcot marshaled his prestige to grant them. Hysteria, he insisted, was an organic disease, just like the other neurologic ailments he had discovered. His primary therapy for his patients was to mesmerize them—or rather, to hypnotize them, as the treatment had been relabeled. (Mesmer had long been dismissed by his medical brethren as a charlatan and a fraud.)
At first blush this was odd, because the hypnotic trance was surely a form of psychological intervention or manipulation. Not so, Charcot countered. Hypnotism only worked with the susceptible, and that susceptibility in its turn reflected their biological defects.
As for the audience—male and female, demi-mondaine and ultra-respectable haute bourgeoisie alike—it was these hypnotized patients that they had come to see. The hysterics created and recreated the spectacle and circus: Scantily clad young women disported themselves on the lecture platform in unmistakably erotic and sensual poses, responding obediently to the commands of the somber, gray-coated master of ceremonies, the great Charcot himself. Masculine dominance and female foolishness were equally on display.
Charcot's insistence on the neurologic reality of hysteria did not long survive his death. Even his own disciples swiftly turned on the now safely silenced bully who had cowed any dissent. Shame-faced (or not), they dismissed the whole exercise as a sham and an exercise in delusion and folly.
Hysteria lingered, however, now passing into the hands of a Viennese doctor who had journeyed to Paris to study at Charcot's feet, and who now began to advance a thoroughly psychological theory—not just of the origins of hysteria, but of other neuroses as well. Indeed, in the end, he ended up offering a theory of human psychology tout court, one that saw madness and sanity as a continuum, not as discrete entities. As he did so, Sigmund Freud abandoned hypnosis for a more elaborate "talking cure," embarking upon his famous embrace of free association on the psychoanalytic couch as the road to exploring and rearranging the unconscious. Remarkably, and unusually, patients did not desert him.
Three quarters of a century later, psychiatry deserted hysteria. Or rather, the new official Bible of psychiatric diagnoses, the third edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-III), could find no place for hysteria in its elephantine array of disorders. Relentlessly shifting back to a biological model of mental disorder, the bulk of the profession shuffled this embarrassing relic of what it saw as an embarrassing embrace of psychodynamic accounts of madness off the stage. Mental illness, its acolytes insisted, was biological and nothing but. If hysteria didn't fit this profile, so much the worse for it. It could no longer be accorded the legitimacy of an official disease label.
Making Sense of Morgellons
Where has all the hysteria gone? One suggestion, fiercely resisted by its sufferers, is that it (or some portion of what was once labeled "hysteria") has undergone a metamorphosis and reemerged as that cluster of mysterious ailments variously referred to as "chronic fatigue syndrome," "fibromyalgia," "neuromyasthenia," "postviral fatigue syndrome," or sometimes as "myalgic encephalomyelitis" (often shortened to its perhaps unfortunate acronym, ME). Skeptics for a time preferred the derogatory term "yuppie flu."
Like Joni Mitchell's Morgellons disease, these ailments (assuming that the disparate labels refer to the same thing) occupy a highly ambiguous status in the medical firmament. Once again, there are no characteristic laboratory abnormalities that serve to identify cases of ME or chronic fatigue syndrome, and many are inclined to doubt the disease's physical reality, suggesting rather that it is a form of psychiatric disorder. No obvious and uncontested biochemical or metabolic abnormalities correspond to patients' subjective symptoms. Nor does this condition correspond to any known neurologic disorder. Sufferers complain of muscle pain, persistent headaches, unrefreshing sleep, sore joints and throats, impaired memory and generalized malaise, not to mention impaired ability to think and to concentrate—and even this extensive list fails to include the full panoply of symptoms some patients experience.
What are we to make of it all? It is clear what those complaining of these syndromes want. Bitterly, the fatigued denounce their critics, the worst-placed rattling their wheelchairs in lieu of shaking their fists, accusing doctors of being "lamentably ignorant of the most basic facts of the disease." Proudly they rededicate themselves to what one of the targets of their ire, the British psychiatrist Sir Simon Wessely, has suggested that they consider: "the long uphill battle against ignorance and inertia."
Pesticides, hormones, chemicals, bacteria, viruses: Something must surely be responsible for these patients' suffering, and if modern medicine pronounces itself unable to oblige with a physical account of their troubles and proposes to ship them off to the tender mercies of the psychiatric profession, then they are off elsewhere. Off to self-help or to holistic practitioners, who are happy to display more sympathy and faith in the physical reality of their disorder, and to link it to the perils of civilization, only this time in the guise of a poisoned modern environment. Off to online support groups, where they can multiply their tales of woe and sense of grievance.
The verbally and sometimes (ironic as that would be) almost physically violent response of many of these patients to the suggestion that their symptoms are psychosomatic, or "all in their heads," is impossible to miss. Those who question their insistence that their disease is "real"—that is, rooted in the body—are deluged with abuse.
Wessely, for example, who was last year's president of Britain's Royal College of Psychiatrists, once worked extensively on chronic fatigue syndrome. Although he was willing to consider the hypothesis that viral or other unknown infections might initially trigger the disease, he proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life. His mail has had to be X-rayed, and at times he has had police protection. Not entirely surprisingly, he has ceased further research on the subject.
Dubbed by the tabloids "the most hated man in Britain," Wessely's experiences are testimony to how desperately many of the afflicted want a neurologic diagnosis. That diagnosis will validate the reality of their disorder, and legitimize their suffering. But the neurologists who have grown to professional maturity in the post-Charcot world evince little or no interest in their troubles. Pausing only long enough, in the most plausible of cases, to subject them to batteries of tests and scans before pronouncing them physically normal, they suggest these nuisances go to see a shrink. That, as we have seen, is the last thing these patients want.