[I sent this op-ed to various news outlets, but none saw fit to publish it. More’s the pity, because the perpetuation of the idea that those who have been shunned by conventional medicine are “hysterics” harms millions of people every year, and not just those with “mysterious” diseases. When one group is singled out for ridicule, we all suffer.]
On August 10, Netflix premiered a new docuseries, Afflicted, about seven people suffering from mysterious illnesses that medical science has been unable to unravel. The series was to follow these patients in their search for answers, documenting their quest as the seven “afflicted” delved into diagnosis and treatment, with the goal of finding a cure. I cannot speak to the diseases suffered by six of the seven, but among this group was a young man, Jamison Hill, who had been diagnosed with an illness that I am intimately familiar with, after having written two books on the subject, and which is, in fact, not “mysterious” in the least.
In 1955, an epidemic of what would be called myalgic encephalomyelitis (ME, also known in the US as “chronic fatigue syndrome”) broke out in Royal Free Hospital in the UK. In spite of the fact that there were close associations with polio, which was epidemic at the time, and that the Royal Free outbreak was well documented by Dr. Ramsay, an infectious disease specialist, within a few years it was dismissed as a case of “hysteria,” simply because the majority of the victims happened to be female nurses. That designation did not prevent the disease from spreading. Throughout the 1980s it gathered steam, until more than 60 outbreaks had been recorded. The notion that there could be a worldwide epidemic of “hysteria” strains even the most fevered imagination, especially when epidemics of this magnitude and scope are always associated with a pathogen.
The weight of medical science, not to mention logic, was not enough to counteract the absurd notion that so many people could develop such a devastating disease in so brief a period of time. And so the ridiculous notion that sufferers of this disease were “malingering” persisted, to the point that it was codified as a psychological ailment — without a single shred of evidence to back up that claim. On the contrary, there have been thousands of studies demonstrating immune abnormalities, endocrine disruption, and neurological impairment among the ME patient population.
Nevertheless, the NHS in the UK, as well as several US institutions, including the Mayo Clinic, have adopted the stance that the disease is the result of “false illness beliefs,” largely based on a highly flawed study called the PACE trial. Their treatment recommendations? Therapy and exercise, the two bulwarks of medical advice when doctors haven’t a clue. And like Multiple Sclerosis, a disease which was called “hysterical paralysis” until the invention of MRI showed physiological damage to the nervous system, the patients were blamed.
Jamison Hill, the young man featured in Afflicted, is among the most severe ME cases. He is entirely bedridden, cannot speak above a whisper, and is in near constant pain. Yet he agreed to participate in the Netflix documentary because he believed it would illuminate the plight of over 17 million sufferers worldwide. His expectations were shattered when the docuseries aired and it became apparent that the producers had no interest in exploring the medical reality of the disease. Their focus was not on the diseases of the seven people in this series, but on whether the people suffering from them were actually sick. Interviews with knowledgeable medical professionals were cut, replaced by a psychologist with no experience in these diseases who expounded on hypochondria. In short, these patients were presented as “hysterics.”
The producers clearly knew what they were doing from the start. Their transformation of the real human experience of chronic illness into a sensationalist reality TV show was not due to laziness or lack of expertise, but rather to sheer opportunism of the basest kind. They took advantage of a vulnerable group of people for personal gain. The producers lied to them, misled them, and exploited them.
My sincere hope is that this series will simply die, unwatched, unhonored and unsung, and that Jamison Hill and the other people who participated in Afflicted will receive from Netflix the apology they so rightly deserve.
Erica Verrillo is the president of the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society, a 501(c)(3) nonprofit serving the needs of ME and CFS patients (AMMES.org). Ms. Verrillo is the author of the definitive guide for treating ME/CFS Chronic Fatigue Syndrome: A Treatment Guide, 2nd edition. She also maintains a blog, Publishing … and Other Forms of Insanity, which provides essential resources for up-and-coming writers.