Parallel to the rise of depression in the second half of the twentieth century, an even more explicit concern with exhaustion began to emerge under the label chronic fatigue syndrome (CFS), once again under the banner of somatic diseases. It was first named and defined in the 1980s and is also known as myalgic encephalomyelitis (ME), postviral fatigue syndrome (PVFS), and chronic fatigue immune dysfunction syndrome (CFIDS).
1 Mental and physical fatigue, postexertion malaise, a perceived sense of effort that renders many everyday activities impossible, and difficulties with concentrating, cognitive tasks, and short-term memory are among its cardinal symptoms. It remains a controversial diagnosis and has in recent decades prompted fierce debate among medical practitioners and patients.
2 It has also attracted considerable media attention: the press contributed substantially to the popularization of the condition and polarized the debate further by repeatedly reporting on allegedly “groundbreaking” medical discoveries of definitive organic causes, on the one hand, and by coining unsympathetic labels such as “yuppie flu” and “lazy cow syndrome,” on the other.
3 Some physicians, researchers, and the majority of patients with CFS argue strongly for the somatic origins of the condition. Most commonly, viral infections, immune dysfunctions, and central nervous system or metabolic disorders are thought to trigger the illness. Others, however, have dismissed the validity of these biological explanations and argue that CFS is primarily a psychosomatic or a behavioral problem, closely related to depression and anxiety, and should therefore be classified as a psychiatric disorder.
4The prehistory of CFS began in the United States and Great Britain in the 1950s with reports of epidemic episodes of viral infections. These included “polio-like” outbreaks of viral illnesses in a psychiatric hospital near Washington, D.C., in 1953, and in Punta Gorda, Florida, in 1956. There had also been a previous outbreak at the Los Angeles County Hospital in 1934, during which similar symptoms were described. Patients complained about motor and sensory symptoms, fatigue, muscle pain, and cognitive impairment.
5 In 1955 in Britain, an infectious epidemic struck 192 members of the medical staff in the Royal Free Hospital in London. They experienced extreme fatigue and severe muscle pain, as well as stiff necks and abdominal tenderness. The syndrome was initially called encephalomyelitis in Britain and, in 1956, benign myalgic encephalomyelitis. The medical historian Edward Shorter explains: “It was ‘benign’ because nobody died and there were no pathological findings, ‘myalgic’ because of muscle pain, and ‘encephalomyelitis’ because the brain (encephalo-) and spinal cord (myelo-) were presumably inflamed.”
6 However, the adjective “benign” was later dropped, and the condition became known as ME. Rheumatologists referred to a very similar symptom cluster as fibrositis, or fibromyalgia. They, too, assumed that the condition was caused by organic and/or external factors, such as viral infections. Yet even the discussion of these early epidemics in the 1950s was already polarized: some researchers considered them instances of mass hysteria, while others argued fiercely for the organic and infectious origins of these outbreaks.
In the 1960s and 1970s, patients who had not been directly exposed to these epidemics began to report similar symptoms. While the earlier epidemic cases were deemed infectious and acute, the newly emerging sporadic cases tended to be noncontagious and chronic. In the 1980s and 1990s, media interest in the condition surged dramatically, partly in response to medical papers published on the illness and partly to widely read patients’ illness accounts, which chimed with the personal experiences and symptom perception of many readers.
7 Support, lobbying, and activist groups soon began to proliferate, and physicians were confronted with a rapidly growing number of patients who were convinced that they had CFS.
8In 1964, Michael Epstein and Y. M. Barr discovered a virus that came to be called Epstein-Barr virus (EBV). The symptoms produced by this virus include lassitude, aching legs, fatigue, and mood disorders, and it was later established that it causes mononucleosis. In the 1980s, many researchers assumed the existence of a direct causal connection between EBV and CFS, but the evidence linking the two was subsequently problematized. Many researchers still believe that viral infections, such as EBV, hepatitis, and meningitis, trigger the onset of CFS symptoms, but they also propose that psychological, behavioral, genetic, and immunological factors play a significant role in the development of the illness.
9 At present, most researchers in the field accept that CFS is the result of a complex and heterogeneous network of causes and agree that there is no persuasive evidence for any of the definitive monocausal explanations of the condition that have been suggested in the past, and nor are there any conclusive biomarkers.
10The Centers for Disease Control and Prevention (CDC) case definition from 1994, which many clinicians still use to diagnose the illness, states that in order to be diagnosed with CFS, patients must meet three criteria. First, they must have experienced severe chronic fatigue for six or more consecutive months, and the fatigue may not be explained by ongoing exertion or other medical conditions associated with fatigue. Second, the fatigue must interfere significantly with their daily activities and work. Third, the individual must also suffer from four or more of the following eight symptoms: postexertion malaise lasting more than twenty-four hours, unrefreshing sleep, significant impairment of short-term memory or concentration, muscle pain, joint pain, headaches, tender lymph nodes in the neck or armpit, and a frequent or recurrent sore throat.
The currently most widely accepted clinical understanding of CFS is that the syndrome often has a microbiological trigger (such as EBV), but that social, behavioral, and psychological factors may contribute to perpetuating the illness and to a patient’s inability fully to recover from the viral infection. Patients frequently cite viral infections as having caused the condition, and recent research has also established that many CFS patients have immunity dysfunctions, endocrine abnormalities, and cardiovascular irregularities.
11 CFS is generally considered a syndrome with either potentially many causes or a single cause that has not yet been established. The latter option is, of course, a genuine possibility, and one in which many CFS patients believe firmly. Many feel extremely frustrated about the lack of progress in identifying the underlying organic factors and blame the government and the medical establishment for failing to direct more funds to CFS research. At present, the only available (and moderately efficacious) therapeutics offered to those with CFS include cognitive behavioral therapy (CBT) and graded exercise, both of which focus on symptom relief only.
How does living with chronic fatigue actually feel? How do those who experience it describe their illness, their everyday life, and their ongoing struggle with this often highly debilitating and chronic condition? The Scottish writer Nasim Marie Jafry has turned her own illness history into a fictionalized narrative,
The State of Me, which allows readers glimpses of the experiential dimension of the condition. Jafry’s semiautobiographical heroin Helen Fleet, a promising, active, and energetic student, falls ill on her year abroad in France and, after months of being in the dark about her disconcerting condition, is finally diagnosed with the rare Coxsackie B4 virus in 1984, and later with chronic postviral ME. The narrator tells us: “Her symptoms have signed a lease behind her back and moved in permanently. They like living in her muscle tissue. It’s nice and warm there.”
12Helen suddenly finds herself transformed from an ambitious student into a housebound, permanently exhausted woman dependent on disability allowance and the care of others, for whom ordinary mental and physical activities require a superhuman effort. She constantly has to economize her very limited supply of energy:
I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all next day because you went. They don’t see you leaning on walls at bus stops because you can’t stand for more than five minutes. They don’t see how tired your arm gets after beating an egg. They don’t know you almost always have poison in your calves when you wake up. They don’t see you weeping because you’re so tired of it all.
Helen, however, gradually learns to live with her condition, finds love, and generally approaches her difficult life with a healthy and often humbling dose of humor. Moreover, she learns to find pleasure in the more mundane aspects of life: “[I]f you’re chronically ill you just survive it. You start to appreciate small things. It’s what gets you through.”
13Jafry vacillates between using a first- and a third-person voice to describe Helen’s experiences, showing her struggle alternately from the inside and the outside, and includes various imaginary dialogues with interested strangers, who quiz Helen on her mystery illness. These “frequently asked questions by well-meaning strangers in the late 80s” include:
STRANGER: What did you do today?
ME: I had a shower and made a cup of tea.
STRANGER: Is that all?
ME: I tried to wash my hair but my arms were too weak to lather.
STRANGER: That’s a shame. Are you able to read to pass the time?
ME: Sometimes, but my arms get exhausted holding the book. They feel like they’re burning. And my head feels like it’s being sawed….
STRANGER: I feel tired all the time. I think I’ve got the mystery illness.
ME: It’s much worse than feeling tired all the time. You feel like toxic waste and you have to have the symptoms for six months before they’ll diagnose you….
STRANGER: Is it like flu?
ME: It’s like flu (without the mucus) PLUS glandular fever PLUS a vile hangover every day. You have to stay in bed. Your life stops and you can’t function. There are subsets of symptoms within symptoms. You discover new kinds of pain, new kinds of weakness, neurological sensations you didn’t think possible. And if you’re lucky, you might have irritable bowel syndrome, allergies and tinnitus thrown in…. [I]f you climb the stairs you feel like you’ve run a marathon—your muscles burn, they think they’ve done much more than they actually have. And they don’t recover normally.
14
In addition to struggling with her symptoms, Helen struggles with the unsympathetic views of “non-believers.” She reacts particularly scathingly to medical professionals who suggest psychiatric treatments:
STRANGER: Why do some doctors not believe you?
ME: I honestly have no idea. Maybe because there’s no single diagnostic test and because they’re arrogant. They don’t understand it, so it’s easier to blame the patient, label them as depressed, neurotic, lazy etc. They say people are jumping on the ME bandwagon, but how can you jump on a fucking bandwagon that you didn’t know existed?!…I think there should be a mass crucifixion of all the GPs, psychiatrists and journalists who don’t believe it is a physical illness. These people are so powerful and are causing so much damage by not believing us. They should be made to pay. They’re making people more ill, forcing them to keep going.
STRANGER: Do you feel that strongly?
ME: Well, I’m against the death penalty but I’d be happy if they all got ME themselves. That would be enough. They would soon believe in it, within twenty-four hours of having it. I’ll tell you that for nothing.
15
Jafry has no time for Freudian or even only remotely psychological explanations of her illness—all such approaches are anathema. A strong, at times even violent, antipsychiatric and antipsychoanalytical stance is in fact a defining characteristic of many CFS patients and activist groups. Jafry not only wishes that doctors who suggest graded exercise or CBT would fall ill with ME themselves but also includes a passage in which she appears to mock the idea that childhood experiences or infantile trauma may have contributed to her illness in some way:
I’m reading one of Sean’s psychology books, about traumas in childhood causing problems later on. I think of my childhood traumas and wonder if my immune system could’ve been damaged. Possible events were:
1) The sofa with the swirly brown and orange cover. I hated the feel of the nylon against my skin, but I would make myself rub my hands along the cushions.
2) Shitting myself in primary one because I was too scared to tell the teacher that I needed the toilet—I sat at my desk playing with rods (the colourful wooden units we learned to count with) and said nothing. I waddled home, a navy gusset sticking to me.
3) Sean peeing on me from halfway up the Michael tree. I can still feel the warmth of my brother’s urine on my scalp. He cried later and denied it.
4) Divorce of Rita and Peter.
16
Although on the surface the passage appears to satirize psychoanalytical narratives, many would consider the final point to be a potentially traumatizing event for a child. Has the divorce of her parents crept unconsciously onto her list, or is its inclusion a gentle hint that, perhaps, Helen’s fiercely antipsychiatric and antipsychoanalytical rhetoric may function as a defense mechanism designed to shield her from confronting painful and unwelcome emotions and experiences? Her parents’ divorce is the only one of the four points on which she does not elaborate.
At the center of the controversy surrounding the CFS diagnosis is the question of whether psychiatric factors contribute to, or even cause, the development of the condition, or whether depression, anxiety, somatization, and other affective and mood disorders, which often accompany CFS, are merely a secondary reaction to the chronic and often debilitating illness. Just like Helen, many patients react angrily, and some violently, to suggestions that their illness might not be organic in nature and feel that the offer of CBT and graded exercise as the only viable therapeutics is demeaning. Most patient pressure groups embrace fiercely antipsychiatric rhetoric and sometimes attack and insult psychiatrically oriented researchers who, they feel, call into question the reality and severity of their suffering by suggesting that it is “all in the head.” Psychiatrists have responded to this challenge of their authority by declaring that the firm belief in the organic origins of their illness, as well as antipsychiatric attitudes, are in fact to be counted among the characteristic “illness beliefs” of this particular patient cohort.
Jafry, for example, who also writes a blog, fiercely objects to the “psychosocial brigades” and even the label CFS, which she considers to be a nebulous term preferred by a “psychiatrically” oriented school of physicians and which denies the neuro-immunological nature of ME. In her view, the cardinal features of ME are postexertional malaise, or postexertional neuro-immune exhaustion, which are caused by viral triggers. “If I were mentally ill,” she writes, “I’d happily be referred to a psychiatrist, but I’m not, so I prefer to stick with neurologists, virologists, immunologists, etc.—the people who may actually be able to help me.” She is particularly scathing about the British psychiatrist and professor of psychological medicine Simon Wessely, one of the most important CFS researchers in Britain, accusing him and his followers of “stealing neurological illnesses and labelling them as psychiatric.” According to Jafry, they “will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves—with their loveable, eccentric and conflating notions of ‘false illness beliefs’ and ‘chronic fatigue syndrome.’…It truly beggars belief that an individual doctor can seek—with catastrophic results—to overturn the reality of so many patients, and the reality of other doctors and researchers.”
17Others with CFS/ME, and pressure groups, too, have targeted Wessely, who has even received death threats. It is ironic that Wessely should have become such a hated figure in the CFS/ME community, as he repeatedly emphasizes that the label “psychiatric” pertains to symptoms and does not in any way include a judgment on the patients’ culpability or responsibility. And neither does the label suggest that the symptoms that patients experience are made up, hysterical, or “all in their minds.” His position is much more nuanced. He does not even deny the possibility that external factors cause CFS:
We suggest that agents such as EBV or viral meningitis can lead to the experience of abnormal symptoms, such as fatigue, malaise, and myalgia. However, the transition from symptoms to disability may be more closely linked to cognitive and behavioural factors. Hence interventions such as CBT designed to reduce disability and counteract maladaptive coping strategies ought to be more effective in reducing disability than symptoms. The evidence so far supports this model—many patients do show considerable improvements in disability and everyday functioning, but are not rendered symptom free by cognitive or behavioural interventions.
18Here and elsewhere, Wessely proposes that, since it has so far not been possible to identify and treat any potential underlying microbiological causes of the condition, it should instead be a priority to help patients with this chronic and debilitating disease to cope better with and to regain some control over their symptoms.
Other researchers and theoreticians would have been more understandable targets for the wrath of the patient lobby. The literary critic Elaine Showalter, for example, discusses CFS alongside other syndromes and phenomena as a modern version of hysteria in
Hystories: Hysterical Epidemics and Modern Media (1997).
19 The medical historian Edward Shorter is certain that CFS is a purely psychosomatic disorder and that patients “choosing” this label deliberately adopt highly subjective symptoms such as fatigue and muscle pain because they cannot be medically disproved. He, too, considers CFS to be a twentieth-century successor of classical hysteria and its motor-sensory symptoms, such as fits, convulsions, and paralysis. Shorter proposes that somatizing patients always adapt their symptoms to fit with the medical thinking of their times, so that they conform to what medical professionals consider “legitimate” diseases. CFS symptoms correspond to what “doctors under the influence of the central-nervous paradigm expected to see,” and its predominantly sensory symptoms were also “almost impossible to ‘disprove.’” “The saga of chronic fatigue syndrome,” Shorter writes, “represents a kind of cautionary tale for those doctors who lose sight of the scientific underpinning of medicine, and for those patients who lose their good sense in the media-spawned ‘disease-of-the-month’ clamor that poisons the doctor-patient relationship.”
20He describes CFS as an “epidemic of illness attribution,” or “epidemic hysteria.” “A whole subculture of chronic fatigue has arisen,” he asserts, “in which those patients too tired to walk give each other hints about how to handle a wheelchair and exchange notes about how to secure disability payments from the government or from insurance companies.” This remark, and the implication that CFS patients might be malingerers and benefit scroungers, is very reminiscent of the antishirker rhetoric that was used in the 1920s to dismiss the cases of shell-shocked veterans and of neurasthenics. Shorter seems particularly disturbed by CFS patients’ disrespect for medical expertise and the fact that they appear to elevate the “subjective knowledge of their bodies to the same status as the doctors’ objective knowledge.” He emphasizes that the rejection of psychiatric diagnoses by chronic fatigue patients is much more violent than “are the normal reactions of medical patients to psychiatric consultation, and is itself a characteristic of the illness.”
21 In other words, he turns the antipsychiatric rhetoric into a full-fledged CFS symptom in its own right.
CFS patients, in Shorter’s view, are particularly susceptible to media reports and willing constantly to change their symptom attributions to make them fit with new diagnostic fads. He concludes his unsympathetic account of the CFS “subculture” with the socially conservative diagnosis that loneliness and a general loosening of familial and social bonds in our modern, anticommunal, and self-centered age are to blame for a widespread loss of common sense regarding the perception and interpretation of bodily symptoms. Lonely people, he suggests, have significantly higher rates of somatization because they are deprived of “feedback loops”—that is, access to the collective wisdom on health and illness of others, who might be able to correct or challenge their perhaps exaggerated subjective fears and anxieties. Our age, marked by the “triumph of the desire for individual self-actualization over commitment to the family as an institution,” fetishizes above all personal growth, to the detriment of communitarian objectives. Pain and fatigue, then, are the characteristic and entirely logical complaints that define our times:
It is the lonely and disaffiliated who give us the image of our own times, who are the latter-day equivalent of the hysterical nineteenth-century woman in her hoop skirts and fainting fits…. The development of psychosomatic symptoms can be a response to too much intimacy or too little. And if our forebears of the “modern” family suffered the former problem, it is we of the postmodern era who endure the latter.
22While there might be truth in Shorter’s remarks on the power of the media in shaping and perpetuating symptoms, and in a resulting transformation of the doctor–patient relationship, it is very noticeable that he—just like George Cheyne, George M. Beard, Jonathan Crary, Alain Ehrenberg, and many other theorists of exhaustion syndromes before him—essentially subscribes to a nostalgic, idealized vision of a better, more community-oriented past. It is clear that he mourns the decline of traditional social structures and despises the rise of a new brand of individualism, which focuses, above all, on self-realization and personal growth. Ultimately, he holds these wider postwar developments responsible for the spread of fatigue illnesses such as CFS and, like his predecessors, thus pathologizes specific sociocultural changes that he deems problematic.
Chronic fatigue syndrome rose to prominence in the 1980s and continued to attract considerable media coverage in the 1990s. Although the actual number of CFS patients has not lessened in the twenty-first century, media attention has now shifted to other exhaustion syndromes, above all depression, stress, and burnout. The British ME Association estimates that 250,000 people in Great Britain are affected by CFS, and the CDC estimates that more than 1 million Americans are currently experiencing the illness. CFS thus still affects more people in the United States than multiple sclerosis, lupus, and various forms of cancer.
23 But why did CFS preoccupy the cultural imagination in the final decades of the twentieth century, and with which historically specific anxieties and preoccupations did it chime? What are the dominant metaphors, imagery, and scientific concepts that are deployed in the popular writings on the syndrome?
In both Britain and the United States, the 1980s saw the rapid rise of neoliberalism. The governments of Margaret Thatcher and Ronald Reagan sought to implement a range of policies to ensure a free-market economy that could become global in its scope. A reduction in government spending, tax cuts, privatization, the disempowerment of the unions, and a privileging of economic growth over social equality lay at the heart of a socioeconomic revolution. In popular culture, the 1980s were often represented as the age of greed, in which materialism became a universally acceptable raison d’être, and in which figures such as the ruthless investment banker Gordon Gecko (
Wall Street, 1987) were either openly or covertly venerated. In some ways, then, CFS can be viewed as an (albeit unconscious) form of protest or backlash against the prevailing ethos of achievement, constant high-level performance, and the pressures of self-optimization.
24 Statistics do indeed show that the majority of typical CFS patients used to be unusually active, successful, and perfectionist before they fell ill.
The 1980s were also marked by growing concerns about the environment, and in particular about nuclear energy, the ozone layer, climate change, dwindling natural resources, and large-scale industrial pollution—concerns reflected in anxieties about pollution and purity, chemical sensitivities, allergies, food additives, the adverse effects of antibiotics, and auto-intoxication in many popular accounts of CFS. Patients frequently voice fears about modern “toxic lifestyles”—poisonous substances to which they are exposed in their daily lives and that they may even ingest in the form of food and drugs. An anonymous commentator, for example, claims: “Never in history have people been exposed to greater assaults on their bodies by environmental pollution. Food additives and drugs may also harm the body and adversely affect the immune system. Certain doctors even claim that long term antibiotics depress the immune system.”
25 In addition, yeast infection, or candida, was a very popular topic in the CFS community for many years. It was thought to be promoted by the use of antibiotics, and patients were advised to cut out various food groups that were presumed to aggravate yeast-based toxicity.
In
Chronic Fatigue and Its Syndromes, Wessely and his coauthors establish some fascinating parallels between CFS and neurasthenia. Those who theorized both syndromes claimed that the conditions were absolutely modern and new, and the result of specific sociocultural developments: “Just as CFS today is the price paid for pollution, exhaust fumes, food additives, aerosols, antibiotics, and so on, neurasthenia was the price to be paid for industrialization, the rise of capitalism, and the consequent strains to which the business and professional classes were exposed.”
26 Both conditions also feature a list of similar associated symptoms, and even some of the therapeutic suggestions are alike in that CFS activists, too, argue that rest is the only effective coping strategy for those affected by the illness, thus evoking the ghost of Silas Weir Mitchell and his infamous “rest cure.” The ME Action Campaign 1989, for example, suggests: “For the majority of M.E. sufferers, physical and mental exertion is to be avoided, and adequate rest essential. Important: if you have muscle fatigue do not exercise, this could cause a severe relapse.”
27The big new medical paradigm of the postwar decades was immunology, in part as a result of the discovery of human immunodeficiency virus (HIV) and the anxieties associated with the epidemic spread of AIDS. Shorter describes immunology as the new “queen bee of the medical sciences,” a medical holy grail, which became invested with high hopes and quickly turned into a symbol of all that was new and groundbreaking.
28 References to defective immune systems appear repeatedly in the CFS debate, and many commentators were keen to embrace immunological explanations of their condition. A patient writes, for example: “ME is very much a disease of our time—an attack on the immune system exacerbated by stress, pressure and the demands of twentieth century life.”
29 One often encounters military metaphors in immunological arguments—the words “attack” and “pressure” are often used. Within the immunological paradigm, the body is frequently imagined as a battlefield invaded by viral or toxic enemies, while the immune system is seen as a kind of “patriotic defense unit.”
30Wessely and his colleagues draw attention to yet another link between CFS and neurasthenia, and their observations apply to many other exhaustion-based diagnoses, too: most popular writings on fatigue-related syndromes draw on metaphors and concepts borrowed from the latest scientific and medical discourses. While Beard’s texts on neurasthenia were written in the wake of a general preoccupation with nerves and electricity, CFS commentators frequently reference the latest immunological and virological concepts, as well as pollution, toxicity, and allergies.
31 The medieval theorists of acedia, in contrast, structured their arguments around free will, divine grace, and demonic influences, while Marsilio Ficino presented a mélange of humoral, astrological, and magical explanatory models that were popular in his age.
It is, of course, not entirely surprising that commentators should adjust their jargon and pepper their accounts with references to the latest medical discoveries; after all, these are simple strategies designed to enhance credibility and to make them sound up-to-date. All of us, moreover, operate within certain scientific paradigms and within the limits of what Michel Foucault describes as “epistemes.” Epistemes are configurations of knowledge and discursive structures that determine not just which propositions are deemed acceptable (scientific or otherwise) at a given historical moment but what kind of ideas can be developed in the first place: each episteme entails limits that are based on a set of fundamental ideological assumptions specific to a historical moment, which might not always be obvious.
What is perhaps most surprising about the CFS controversy is that many patients consider a “psychiatric” diagnosis and the offer of “psychiatric” therapeutics as anathema to and an attack on the legitimacy of their experience. Regardless of the evidence for and against the organic origins of the illness, one would have thought that the bias against the perceived stigma that comes with mental health diagnoses would have substantially declined after Sigmund Freud, especially in the Western world. Yet the fiercely antipsychiatric stance of the patient lobby is reminiscent of the nineteenth-century neurasthenia debates, in that all causation is assigned exclusively to external or organic factors. In some ways, this position represents a distorted reflection of the current state of a strictly biomedically oriented psychiatric and medical establishment. After the Second World War, a second “biological turn” took effect, which reinforced an outdated nineteenth-century mind–body dichotomy, a neo-Cartesian splitting that many hoped had been overcome and that repressed rather than sublated the achievements of the psychoanalytical paradigm. Once again, mental illness was (and in many cases still is) seen purely as a disease of the brain, an idea first introduced by the German neurologist and psychiatrist Wilhelm Griesinger in the mid-nineteenth century.
Many other patient groups readily accept psychogenic theories about their conditions. The relative openness to psychosomatic explanatory models may also partly be determined by different personality types and cognitive and attributional styles—some patients, for example, do not mind self-identifying as depressed, while others prefer diagnoses structured around external agents, such as CFS, stress, and burnout, as they are thought to carry less stigma and suggest blamelessness. Wessely and his coauthors argue that the belief in external causes for patients’ conditions may serve the function of protecting self-esteem, guarding them against self-blame and guilt (which are key symptoms of depression and notably absent in CFS), “but at the cost of increased helplessness in the face of an invisible, external adversary.” Avoidance behavior, the reduction of mental and physical activity, and certain illness beliefs, they argue, are not what triggers CFS but precisely what keeps it going.
32The debate over the biological or psychogenic origins of CFS may sound academic, even obscure. However, the ways in which we imagine and represent our illnesses, the narratives we tell ourselves and others about them, and the etiological theories in which we believe do matter. Beliefs, internal representations, and metaphors affect how symptoms are experienced, how we cope with them, and how we interpret bodily signals. Such beliefs can, of course, also be damaging or self-perpetuating; for example, the assumption that one’s condition is incurable and possibly even fatal, and that rest is the only way to manage one’s symptoms, can become the cause of anxiety and depression and perpetuate behavior that may aggravate or complicate the development of an illness.
33In
Why Do People Get Ill?, Darian Leader and David Corfield present compelling evidence for the ways in which our minds can affect our bodies and the symptoms we develop. They explore some unsettling research on the impact of psychological factors on what we tend to think of as purely physical illnesses. Patients who are less able than others to engage with and express loss and trauma, they argue, often translate their losses directly into certain diseases: “
The body responds here with an answer when the symbolic universe doesn’
t.” As they observe, a symptom “can be a form of language, an appeal which aims to make someone else recognize one’s distress.” The compelling evidence they present in their study questions the monocausal, antiholistic illness models and the fragmented view of the body that is dominant in the Western world and that the CFS patient lobby appears to have embraced with particular eagerness. Leader and Corfield relate this Cartesian splitting to the fact that modern medicine is largely determined by economic interests, and that two-thirds of clinical studies are funded by drug companies, which have no interest in promoting psychological techniques.
They analyze the bacterial-infection model as an example of a monocausal illness theory and present evidence on various bacterial illnesses that show that the matter is, in fact, more complicated: a surprisingly large percentage of children and adults, for example, carry the bacteria that cause tuberculosis, malaria, ulcers, and gastritis. However, a significantly smaller number actually develop the diseases. Psychological factors play a crucial role in whether the body is able to fight off these bacteria: “The bacterial model, after all, conceives of illness as a single, discrete entity, and it is suspiciously close to the ancient idea of illness as an autonomous entity which is visited upon one, like a demon. The discovery of microscopic organisms and infection processes did not dispel these archaic fears but rather gave them a new, scientific veneer.” The belief in purely external agent–driven illness models, Leader and Corfield argue, constitutes a form of splitting. Moreover, it is in fact a defense mechanism aimed at shielding not only patients but also culture as a whole from certain troubling insights: as they observe, the split between mind and body “is in fact itself
a defence mechanism against recognizing how disturbing, excessive or unprocessable ideas affect us.”
34Shorter, too, suggests that in the case of psychosomatic illnesses, our unconscious plays a major role in the shaping of our symptoms: it is the unconscious that orchestrates our bodies’ responses to unhappiness or stress. But the unconscious mind is influenced by the surrounding culture and is able to read current medical models of “legitimate” and “illegitimate” symptoms. According to Shorter, most organically based symptoms would currently fall into the former, and most psychogenic symptoms into the latter category. Medical discourses shape symptoms, in that they provide culturally determined templates, or a “symptom pool,” of legitimate illness behavior on which the unconscious draws. The unconscious wishes to ensure that the patient’s distress will be considered sympathetically: “The unconscious mind desires to be taken seriously and not be ridiculed. It will therefore strive to present symptoms that always seem, to the surrounding culture, legitimate evidence of organic disease. This striving introduces a historical dimension. As the culture changes its mind about what is legitimate disease and what is not, the pattern of psychosomatic illness changes.”
35It seems that CFS patients occupied a contested liminal space from the very start, one that even today challenges the cultural and medical limits of that which is considered legitimate and illegitimate illness behavior. While many diagnoses located in the mind–body borderland fall from favor at some point and are subsequently replaced with different ones, no other diagnoses have been greeted with so much hostility and disbelief from the outset. Ironically, it is precisely the insistence on the organicity of their condition—originally, of course, a strategy to secure a sense of legitimacy and proper medical recognition—that has backfired spectacularly: in the age of the biomedical paradigm, only measurable biomedical evidence is considered legitimate proof of organic disease. Until that is discovered, it is unlikely that the CFS controversy will be resolved.