I’ve watched my fellow patients with myalgic encephalomyelitis, also known as chronic fatigue syndrome, suffer and even die from the ignominy of a suspect disease. Patients often can’t get effective medical care, their disability insurance applications are rejected, their marriages are torn apart, they’re abandoned by their families, they end up in poverty and food insecurity, and sometimes they die, occasionally from the disease itself, more often from suicide.
As terrible as this litany is, nothing has brought home to me the dangers of prejudice against those who are chronically ill like the new Netflix documentary series “Afflicted.”
The television show follows the lives of seven people with “bizarre” health problems, including ME/CFS and mold illness, diagnoses I share. As the series unfolds, the agenda becomes increasingly clear: to show that the primary cause of these diseases is psychological. In Episode 6, each participant is shown while their parents and partners speak: “I wonder, is he imagining this to the point that it becomes real?” “Is this in her head? Is it psychosomatic?” “Some of it’s in her mind, I guess.”
Skepticism chokes the flow of research dollars.
The patients are depicted as bleeding their loved ones dry of money and goodwill, as abandoning reputable doctors in favor of greedy quacks, and as being freaks utterly unlike normal healthy people.
When I finished watching the series, I feared for my fellow patients — for example, for Rebecca Handler, an ME/CFS patient who recently tweeted:
She begged friends to take her in because her parents threatened to put her in a psychiatric ward. And, as she told me, they hadn’t even yet watched “Afflicted.”
Whatever Handler’s parents believe, science is unequivocal about the reality of ME/CFS, as well as many other illnesses depicted in the series.
In 2015, the National Academy of Medicine released a report that called ME/CFS “a serious, chronic, complex, multisystem disease,” rejecting the idea that it is psychosomatic and demanding that doctors take it seriously. Similarly, though chronic Lyme disease is often dismissed as a fake ailment, the science is clear that 10% to 20% of patients who get ideal treatment for documented Lyme infection are nevertheless left chronically ill. Mold and chemical sensitivities can be caused by an illness called mast cell activation syndrome, in which a type of immune cell overreacts to ordinarily benign substances, releasing a flood of inflammatory molecules.
The series says nothing about such studies and findings. Instead, a psychiatrist who hasn’t examined any of the patients featured in “Afflicted” offers explanations for their maladies ranging from past trauma to benefiting from illness to simple delusion. The filmmakers juxtapose these explanations with footage of the participants that suggest the psychiatrist’s musings apply directly to them.
The filmmakers include few interviews with the patients’ mainstream doctors, while highlighting complementary alternative treatments the patients pursued, treatments the filmmakers themselves sometimes arranged at no cost to the participants, according to participant Bekah Fly. Fly says they even pressured her to pursue such a treatment against her doctors’ advice.
Participants have described many more ethical failings, including that the filmmakers deceptively edited footage to make it appear that family members believed their loved ones’ illnesses might be psychosomatic when they emphatically did not.
“Our intention,” protests Dan Partland, executive producer of the series, “was to give the world a compassionate window into the difficulties of patients and families struggling with elusive and misunderstood illnesses.”
Whatever the series’ professed intent, “Afflicted” is a compendium of scientific and ethical flaws. The narrative that emerges is clear: These people are causing their own problems through their bad choices, and they are not like you. “You” are good and normal; “they” are bad and strange.
Unsurprisingly, the series is amplifying the disdain already heaped on patients. Tweets like this one are common:
In a Reddit thread, several doctors confidently assert that the participants must be suffering from psychosomatic illness. And the participants have been deluged with hate mail, some calling on them to kill themselves.
A group of writers, activists, artists, filmmakers, physicians, and scientists — including me — has released an open letter calling on Netflix to take down the show.
Fully dismantling the ableism fueling the series requires us to open our hearts to the awful possibility that we, too, could become horrendously ill with a disease doctors don’t understand. But history shows that there’s a shortcut to stop the disbelief: scientific research. Multiple sclerosis was called the “faker’s disease” until MRI scans showed brain lesions. The understanding of ulcers, breast cancer, tuberculosis, rheumatoid arthritis and many other illnesses developed similarly.
But skepticism chokes the flow of research dollars. ME/CFS, the best funded of the diseases portrayed, gets a pathetic $15 million in research funding per year, according to the NIH — which, given that about 1 million Americans are affected, amounts to $15 a patient.
This is what makes “Afflicted” especially pernicious: Dismissing people like me as “crazy” leaves us unable to figure out why we’re actually sick.
Julie Rehmeyer is the author of “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand.” She is a contributing editor at Discover.
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