An Open Letter Accuses Netflix's 'Afflicted' of Abandoning Ethics and Science - Pacific Standard

An Open Letter Accuses Netflix's 'Afflicted' of Abandoning Ethics and Science

The new documentary series promised compassion for sufferers of poorly understood chronic illnesses. Instead, it peddled the tired narrative that their suffering is "all in their heads."
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Afflicted.

Afflicted.

Last month, Netflix released a new docuseries, Afflicted, which follows "seven people suffering with bizarre chronic illnesses."

There's Jamison, a bodybuilder now too weak to speak due to myalgic encephalomyelitis/chronic fatigue syndrome. Pilar, an actress confined largely to her apartment after developing multiple chemical sensitivity after an undetected gas leak. Jake, a composer derailed by episodes of depersonalization and a host of other disabling symptoms perhaps due to Lyme disease. Carmen, a Spanish teacher considering moving to a cell phone-free town to get relief from her electromagnetic hypersensitivity. Jill, a therapist with multiple chemical sensitivity and mold toxicity. Star, who has the movement disorder dystonia and several other conditions, including multiple autoimmune diseases. And Bekah, an artist suffering from Lyme disease, mold and chemical sensitivities, and an immune deficiency, who has fled to a van in the California desert.

The participants were told the series would explore their conditions—some of which are poorly understood conditions that are sometimes described as "contested illnesses"—through a "compassionate lens." And before its release, there was cautious optimism among patient communities that the series—released on a platform with 300 million viewers worldwide—would bring greater empathy and understanding for those suffering from these extremely marginalized conditions. But once released, those hopes were dashed.

On Tuesday, I joined a group of physicians, scientists, filmmakers, and writers—including Lena Dunham, Monica Lewinsky, and Mario Carpecchi, a Nobel Laureate in genetics—in signing an open letter to Netflix detailing many ethical missteps, scientific errors, and omissions evident in the series. Allowing Afflicted to remain on the widely watched platform, the letter states, "will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people." Multiple petitions have been launched calling on Netflix to remove the series.

Five of the seven subjects of the series have written essays on Medium about their experience. They say their stories were misrepresented through deceptive editing techniques that seem more befitting a reality show than a documentary series. "The most serious and central flaw of Afflicted is the way it frames our conditions—which impact millions of people around the world—as psychosomatic or psychiatric disorders," they wrote in a collective essay. "It does this in part by carefully excluding facts, which show that, yes, while there is a lot that science does not understand about our conditions, they have an 'organic' basis."

Before agreeing to take part in the project, many of the participants directly asked producers whether Afflicted would suggest that their illnesses were psychosomatic. Despite the producers' assurances to the contrary, the central question that drives the series is whether the subjects' illnesses are "real" or "all in their heads." Participants' past mental-health problems and stressful events preceding their illnesses are brought up repeatedly to imply that they could be the causes of their symptoms. Footage of the subjects is intercut with loved ones wondering if they are perhaps psychiatrically troubled, exaggerating their symptoms, or, as one says, "imagining this to the point that it becomes real."

The problem is not that the series included these skeptical views. To be sure, one of the most difficult parts of being ill with these "contested" conditions—or, for that matter, even a well-accepted but "invisible" chronic disease—is contending with such doubts, which are pervasive among friends and family, the media, and the medical profession at large. But according to the participants, in many cases, interviews with their family and friends were deceptively edited to make them appear more skeptical than they actually are. In some cases, clips in which family members acknowledged they'd wondered if their loved one's problem was psychological early on in their illness were taken out of context to imply they still harbored those beliefs. In others, producers seem to have put words into their mouths: According to Jamison, interviewees were asked to start their answers by repeating the question they had been asked. This is how the producers managed to get a clip of his mom seemingly questioning if "hypochondria" was a component of her son's illness.

Indeed, the editing choices in the series not only fail to challenge these armchair diagnoses but often seem to actively support them. For example, a scene showing Star, who suffers from dystonia as well as several well-accepted autoimmune diseases, at her birthday party is intercut with an interview with her brother. After he recalls wondering if her illness is perhaps a "cry for attention," the shot cuts directly to her opening a gift and saying: "When you're healing, you gotta look hot."

Even more irresponsible is the inclusion of such psychological speculation by various unqualified doctors. Presented as experts despite the fact that they have not examined the participants and are not specialists in their particular conditions, they muse vaguely about the power of the mind to produce physical symptoms. A single psychiatrist, who has never evaluated any of the subjects, is quoted extensively throughout. In Episode 4, which is entitled "The Mind," he gets right to the point: "Statistically, it's more likely that the cause of the problem is a common psychiatric problem more than it is an unknown or uncatalogued physical illness. You can be deluded that you're sick, meaning you can believe you're sick when in fact you're not sick."

The show implicitly endorses this view by simply omitting salient facts that would challenge it. You wouldn't know from the show that, according to the five subjects who've publicly responded, they'd all previously seen mental-health professionals who'd concluded that their symptoms weren't attributable to psychological problems. In fact, all were required to undergo and pass a psychiatric evaluation to even be part of the series. The show also glosses over the fact that, while some of the participants' diagnoses are conditions that currently lack biomarkers, many of them, in fact, have documented, objective abnormalities or well-accepted diagnoses that are not in the least bit controversial.

Most damning of all, Afflicted failed to include any of the scientific evidence that would have served as the most persuasive counterpoint to those skeptical that the contested illnesses it highlights are real and serious organic conditions. Although medicine lacks—to greater and lesser degrees—a good understanding of their pathophysiology, there are scientists and clinical researchers who have been studying their biological underpinnings for decades. Any serious journalistic account genuinely seeking to fairly present the debate over these conditions would have included the voices of these specialists well-equipped to make the case for their physiological basis.

It's not like Afflicted producers lacked access to such experts. For example, a crew filmed prominent ME/CFS researchers at a Stanford University symposium on the "molecular basis" of the disease and even conducted interviews with several of them. Yet none of this footage made it into the series. Even the participants' own conventional medical doctors weren't included. Instead, the primary voices insisting on a physical cause for their illnesses in the show are the patients themselves and alternative health practitioners. And the latter's seemingly wacky and often expensive therapies—which some participants say they were encouraged or even pressured by the show's producers to pursue—serve as yet another means of casting doubt on the participants' sanity.

In the final minutes of the series, Afflicted ends on an ostensibly agnostic note about the root causes of their illnesses. "Whether it's from bacteria or parasites or viruses or fungus or if it's in your head ... it's just as real," one doctor says. "There are plenty of people who have physical symptoms that are being generated by their brain," the series' ever-present psychiatrist reiterates. "When people are suffering, they are suffering," adds another expert. "[We need to] be willing to open our minds to saying, 'We don't know what's going on, but these people need help,'" concludes a third.

These empty platitudes elide the real issues entirely. Certainly, anyone suffering—whether their illness is, at root, physical or psychological—deserves sympathy and care. And no one who has been touched by mental illness would deny how very real and devastating it can be. To get these patients the help they need, though, it is essential not just to validate their suffering but to have an accurate understanding of its cause. But over seven episodes, the show has systematically stacked the deck in favor of the hypothesis that the cause of their symptoms is, in fact, "all in their heads." Doing so is irresponsible not because there's anything shameful about mental illness but simply because it's very likely not true.

The boatload of scientific research the show left out supports physiological explanations, as does modern medicine's long and ignominious history of erroneously assuming that illnesses whose underlying mechanism is not yet understood are psychiatric. Yet Afflicted is as lacking in historical context as it is in science.

This pattern is particularly common when it comes to illnesses that disproportionately affect women, which is true of most of the conditions highlighted in Afflicted. It's a fact that goes unmentioned in the series. I covered the sexist histories of a few of them in my book: In the '80s and '90s, ME/CFS was labeled "yuppie flu" in the media, and the medical literature claimed it was a psychosomatic problem of "educated white women"—particularly working mothers struggling to "have it all." Early cases of multiple chemical sensitivity were dismissed as "hysterical housewife syndrome." Chronic Lyme disease was stereotyped as an invented affliction of affluent, hypochondriacal women hypervigilant about every minor threat in their "suburban splendor."

Patients suffer grave material harms from this misunderstanding of the nature of their illnesses—not least of which is ineffective or inappropriate treatment. But perhaps the most damaging consequence of this belief is that it discourages scientific study. The assumption that any condition that biomedical science cannot yet explain must be "all in your head" means there's little interest and funding for research—research that would explain it. In other words, psychosomatic theories have proved to be a powerful impediment to doing precisely what the series suggests is a necessary first step: admitting that "we don't know what's going on." As a researcher on multiple chemical sensitivity noted in the book Explaining Unexplained Illnesses: "We are in a catch-22 situation. It is difficult to attract research money for a controversial condition and it is difficult to resolve the controversy without the necessary research."

Yet Afflicted fails to emphasize how severely under-researched these conditions are. (ME/CFS, arguably the best-funded of them, gets only $15 million annually from the National Institutes of Health, a minuscule figure that is double what it was a few years ago.) The average uninformed viewer is thus left to assume that mainstream medicine knows little about these conditions because there is nothing to know. In reality, these conditions are poorly understood because medicine has invested next to nothing in researching them—in large part because of the very attitudes perpetuated by the series.

When I emailed the show's executive producer, Dan Partland, for a response to the criticisms made in the open letter, a representative replied with a statement saying they are "saddened and upset" by some of the reactions to the series. "Our intention was to give the world a compassionate window into the difficulties of patients and families suffering from elusive and misunderstood illnesses, to humanize their struggle, and to show that struggle in all its complexity."

If compassion was the goal, the series seriously missed its mark. On Twitter and Reddit, the participants have received ridicule—even physical threats—from viewers, including doctors, nurses, and other medical professionals. Partland called this online abuse "heartbreaking." "There are no villains in these stories; the patients just want to get well, the loved ones just want to support them, and the doctors just want to help; and they all deserve our compassion."

Given the participants' charges of manipulative editing and the willful omissions of scientific research, it's difficult to believe that Afflicted didn't set out to advance a particular narrative. But if it's true that producers did not intend to reinforce the stigma against extremely marginalized patients, that only underscores one of the points made in the open letter: "The inclusion of people with disabilities in the telling of their own stories is essential to the creation of compelling, ethical, authentic cinema." It's hard to imagine that Afflicted would have turned out the way it did if chronically ill people had been involved at all levels of the production and editing process.

Instead, a show that had great potential to be a major step forward in raising awareness about the plight of patients unlucky enough to be suffering from conditions that medicine doesn't yet understand became, as one viewer put it, "every chronic illness patient's worst nightmare."

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