ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE
by Giada Da Ros
As patients who suffer from it well know, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a life-altering, debilitating, chronic, systemic disease that frequently and dramatically limits the activities of affected patients (Open Medicine Foundation). In the words of doctor William Reeves, former CDC Chief of the Viral Diseases Branch, “the level of impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease” (US Department of Health and Human Services). Classified by the World Health Organization (WHO) as a neurological disease, ME/CFS is considered a global health crisis that affects an estimated 20 million people worldwide. It can strike anyone, at any time and at any age. Women are three times more likely to be affected than men. Up to 90% of patients are undiagnosed, 75% are unable to work, 25% are housebound or bedridden, and there’s only a 5 to 10% recovery rate (#MEAction).
Despite this, and despite the long list of symptoms that patients experience, ME/CFS has historically been a very controversial disease. I look at early examples of how television news reported on the disease to show how, since the end of the 20th century, the ME/CFS community tried to utilize television spaces to create medical credibility and patient visibility while fighting stigma and prejudice. Their efforts challenged the political system and the philosophical approach we use to think about illness itself, allowing the patient to re-frame the discourse. I will focus on several programs that aired at the turn of the century. This is not just for historical reasons: though it’s true that new spaces, like the internet and social media, have emerged, regular television still maintains a broader and less topic-focused approach that can reach a wider variety of audiences. Additionally, some of the main historical communication issues with regard to ME/CFS still exist today; thus it is worth looking back to draw inspiration from what worked and what should be done differently.
People inside the community are aware of the many challenges faced through the years, issues that are not solely medical. There are no approved treatments for ME/CFS, no cure and, particularly significant for communication, no single test that can diagnose patients. We can mention numerous issues that relate to the disease that make it a prickly topic to handle well. Patients have often been accused of malingering and doctors may dismiss their condition as a somatoform disorder. Patients look healthy because ME/CFS is an invisible disability with a trivializing name: after all, everybody experiences fatigue so it’s easy to think that having ME/CFS means just being too tired. There is not always consensus on case definitions. Some of the vocabulary now used to speak about the disease was not there in the past and we are still refining it. The hallmark post-exertional malaise (PEM) is unpredictable, and exercise intolerance is a topic fraught with controversy. The causes and onset triggers are still uncertain. There is a gender bias. Also, for many, if you can’t see it and you can’t prove it, it doesn’t exist, it is as simple as that. Yet patients and the doctors who believe them know better.
ME/CFS is not taught in most medical schools – as of 2015, the Institute of Medicine report states that fewer than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS. Although many health care providers are aware of ME/CFS, they may lack essential knowledge about how to diagnose and treat it (Institute of Medicine, 2). So, all the more, media is key. We can now list a few documentaries on the topic: Living Hell (1993); I Remember Me (2000); Invisible (2009); Voices from the Shadows (2011); ME: The Toxic Tiredness (2012 – this is a TV documentary); Forgotten Plague (2015); What about M.E.? (2016); Perversely Dark (2017); Unrest (2017); Hope to Our Hands (2017); Left Out (2020). As we can see, there is only one title before the year 2000. Before that time, the ME/CFS community relied on television to make itself visible, to prove its existence to the public. Television itself was the space. It still is. And patients were and are instrumental in this effort.
I look at how the small screen dealt with the topic, with the framework of a cultural approach to health communication: that is, seeing television “as a cultural phenomenon that maintains, produces, and transforms health and illnesses” (Torkkola, 24) and bearing in mind that “health and illness are always historical constructions; all functions related to health and illness, their research, and their treatment are temporal-spatial social and cultural practices” (24). News is the main television genre I take into consideration here, given it was the first that brought ME/CFS to light. Two investigative reports from the 1990s show us how TV journalism was able to reveal the reality of the condition, denouncing the mistreatment of patients and the governmental and medical malpractice and leading the way in battles that are still fought by advocates today.
Primetime Live (ABC, 1989 – 2012), a news magazine television program, aired in 1996 a 12-minute-segment exposé on the Incline Village Outbreak called “Sick and Tired.” Host Sam Donaldson introduced an investigative report by Good Morning America (1975 – present) correspondent Dr. Nancy Snyderman on what had happened in the previous 10 years. The exposé followed the publication of a seminal book on the topic, Osler’s Web, by Hillary Johnson, which anchored what is ultimately the program’s main argument: the government failed to act appropriately. In the US, the neglect of the National Institute of Health is still an issue (Tillman), and the same state of affairs can be observed in most countries.
Announced as “a mysterious ailment that surfaced a decade ago” and later described as one of the most “incredible medical stories of our century,” ME/CFS (at the time just CFS) was positioned from the start as something unusual, strange. The program began by acknowledging that something perplexing had happened. It employed both verbal and visual representations: beautiful crystal-clear imagery of Lake Tahoe was accompanied by a voice-over saying that there were no warnings, no signs in the fall of 1984, nothing looked different. This was followed by a generic but ominous declaration: “For some, a shadow began to fall,” and a cut to the voice of a couple of patients with blurred images of them and the town. Expert Dr. Cheney recalled being “mystified” by the “bad flu” that was turning into something else.
By intertwining a historical reconstruction of events, newspaper headlines, and interviews with doctors and a few patients, the show constructed a timeline, and with it, a collection of voices that clearly supported the idea that something serious was occurring. Cheney and Peterson, the first physicians involved, used their own money to order MRI tests and discovered patients had lesions in their brains. The hypothesis that it was linked to Epstein-Barr virus was discussed. Dr. DeFreitas discovered that patients were positive for a virus that attacks the immune system. Patients and family members shared stories of their struggles, including one of a girl who ended her life after a classmate cruelly suggested she should do just that. A case for the aggrieved was this way established.
With rigorous journalistic reporting, the news program revealed how authorities responded (or failed to respond) to each request for involvement, bringing to light wave after wave of requests for attention met with disinterest or worse, thus creating space for doubt around governmental policies. 1. The CDC didn’t send anyone for months despite being called repeatedly; 2. They didn’t inform Dr. Bell, a physician who was facing something similar on the east coast, about what was happening; 3.They ridiculed the situation, joking about it and implying it was a fake disease; 4. They gave the condition a belittling name; 5. When investigators finally arrived, they only looked at lab tests and charts, collected a few blood tests and didn’t talk to the patients; 6. Despite CFS being all over every major newspaper’s headlines, there was no word from them: “dead silence;” 7. The CDC refused to be interviewed and Reeves, a representative, told the producers of the show over the phone that there was no virus, no immune abnormalities, and no clusters, and that it was just hysteria. Later, another representative said on camera that there were simply conclusions on which not everybody agreed; 8. The NIH believed patients got better by themselves no matter what you gave them and all doctors followed the government’s lead; 9. They were unable to admit that they made a mistake.
It’s evident from this investigative report, which enumerates a list of questionable responses, how authorities’ conduct was erroneous. In outlining these responses, a critique of the hegemony of the biomedical model that only looks at data without even considering patients also emerged. Maturo (2007) explained the paradigm through which we understand ideas of health, illness, and medicine. The biomedical model has a pretension of objectivity; it takes the body as its object, considered separate from the mind, and frames disease as a malfunction of the body-machine. Specialization arises in this model, relies heavily on technology, and grants physicians professional dominance (Parolin). But as Twaddle theorized, in not being well, we should identify three elements: disease, illness, and sickness. Disease is the one covered by the biomedical approach; illness is the objective health state as identified by the patient (the experience of pain, the meaning the disease has for the patient); sickness is the social identity of the disease, how others see it (the institutional recognition and the representation and imagery around the disease). Here, therefore, what is criticized is not only how the government responded, but also its very conception of disease and medicine.
A scathing critique of how medicine is understood emerges explicitly on another program that dealt with ME/CFS even earlier, in an episode from 1993 of BBC4 Frontline (1). Here, journalist/doctor Ann McIntyre admits openly that it’s not just a problem about how patients are treated, it is also that the medical profession can’t admit fallibility. It goes deeper than the prejudice and the stigma, it goes to the core of how illness itself is defined. She therefore challenges the philosophical understanding of disease as something real only if it can be physically tested, as if laboratory proof was a substitute for listening to the patient.
Through television, Dr. McIntyre manages to first look at illness and rewrite the narrative of sickness. She herself does what she believes should be done by all. First, she listens. She interviews patients and carers and, through their testimony, gives value to their experiences: the young woman who isn’t able to eat; the boy who was thrown in a pool while paralyzed to prove he could swim if he wanted; the woman who was disbelieved and told she was a “time-waster,” an “attention-seeker,” a “parasite.” Dr. McIntyre expresses bafflement at these dismissals. Then she looks for evidence to prove they are the victims: a pioneering imaging study that shows there are differences between them and healthy controls; the realization that horses were diagnosed with this and allowed to rest in their stables, while humans were disbelieved; the WHO classification; the historical example of Florence Nightingale who is said to have suffered from the disease.
How we frame health communication produces and maintains health and illness, and thus has the power to transform their construction. Therefore, Dr. McIntyre adroitly uses television also as a space to denounce the media’s treatment of the disease, interviewing the Sunday Times science correspondent who named CFS the “Yuppie Flu” and calling him out on the use of a derogatory term. But most of all, she attacks the psychiatrization of ME/CFS, which is a problem all over the world, but one particularly felt in the United Kingdom, from where she reports. She interviews physicians who bluntly state that this condition is clearly something non-organic, but that there are personality issues in early middle-aged women who have problems with sex, relationships, unhappy marriages, children making life difficult for them, or are prohibited from doing what they want in terms of personal achievements and are therefore unhappy. This attitude corrupts the discourse around ME/CFS.
Misogyny deeply affects the way that sick women are portrayed: hateful attitudes towards women cause them to be dismissed, their symptoms to be belittled, and their complaints attributed to their supposedly feeble minds. Patients actively denounce these attitudes, as exemplified by Jennifer Brea’s TED Talk in 2017 (Brea). At the time, the examples shown by the journalist clearly demonstrate that ME/CFS is not just a disease of unhappy middle-aged women.
Second, patients in general are perceived as “accused.” As Wren wrote regarding autoimmune diseases, which is one of the possible hypotheses for ME/CFS, “the cause and the subsequent relocation of physical manifestations of matters held to be mental and emotional in origin continue to reflect the historical legacy of hysteria” (59), a word that the CDC explicitly invoked. Although the doctor attributing the condition to the psychology acknowledged patients’ suffering, the behavior shown towards patients reveals another truth: this kind of labeling is in the end considered “deliberately fraudulent, no more than the pretense at illness or disability on the part of the patient-cum-perpetrator for personal gain (e.g. financial), in order to avoid (e.g., of punishment or responsibility) or as integral to the process of adaptation (i.e., a matter of personal situations or lifestyles)” and “the false attribution of malingering as a diagnosis carries with it – imposes, as it were – a substantial burden of suffering on a significant portion of the patient population” (59). The program makes us aware of it.
Third, Dr. McIntyre asks her audience to observe how detrimental this abuse of psychologization is. In the case of ME/CFS, it has been repeatedly reported (Gibson and Sherriffs) that the lobby of psychiatrists collectively known as the Wessely School, named for the president of the Royal College of Psychiatrists Simon Wessley, has been and continues to be extremely damaging by hindering the progress of more useful research. Psychologization, according to the host of the show, is also the easy way out. It’s easier and cheaper, but a nosological faux pas. It masks the failure of the medical profession to recognize and acknowledge what they cannot diagnose, even as many medical conditions elude early diagnosis. Therefore what we witness here is the demand for a biomedical approach at the right moment: when it serves to help the sick and find out what ails them, not to undermine and devalue their truth.
What makes Dr. McIntyre’s argument particularly poignant is that she looks straight into the camera and states that she herself is a sufferer. This is unknown to the people she interviews. She tells her story briefly, making the viewer understand there are several degrees of severity for the disease. Patients in ME/CFS are considered very severe if they cannot take care of the basic functions of life (eating, going to the bathroom, washing) by themselves; severe if they are mostly bedridden; moderate if they are housebound, with a reduction of daily activity to at least 50% of their previous levels; and mild if they have maintained a greater level of functionality. Given the stigma associated with the disease, there are many closeted patients. Someone could easily go undetected if they don’t share their diagnosis. But as unrelated studies on homosexuality have argued (Blasius), coming out is a very political act, because it forces recognition and breaks a silence that maintains the chain of cultural subjections. Here Dr. McIntyre does just that and, given that framing in medicine is dependent on cultural constructs (Wren), helps to destroy the stigma of illness. Television in this case becomes a political space that is inherent to the social life and the power structures that pertain to it, but also inherent to identity, that is to someone’s awareness of their own self and their ethics. Recently, Whitney Dafoe, who is already one of the best-known and more visible patients, did something similar with this specific intent: he came out as a patient online (Facebook post).
In the years that followed, other issues regarding ME/CFS arose, even very controversial ones: the infamous so-called PACE trials, pushed by the Wessely school, and the denunciation by patients’ organizations of the irrelevant or negative impact of the proposed Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) as treatments for ME/CFS; the hypothesis of the murine retrovirus XMRV as the trigger of the disease, later proved to be the result of a lab contamination; the emergence of PEM as the prominent symptom and the understanding of it… New research “actors” appeared on the scene and the scene itself changed, with the spreading of YouTube and other venues to disseminate and educate about the disease. Yet, what was done in the past is still relevant, as the two examples showed – situations have not yet been resolved and overcome; all is still significant to the present and they are still very good lessons on ways to educate and expand empathy towards sufferers who are misunderstood, neglected, and rarely depicted. Patients are front and center, then as now, in questioning governmental policies and challenging the conceptions of disease and medicine.
READ PART 2 OF THIS SERIES HERE
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