Forgotten Plague

Forgotten Plague is a 2015 short documentary film which explores the current situation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the United States. Co-director and journalist, Ryan Prior, interviews leading experts, scientists, clinicians, and ME/CFS patients. As a ME/CFS patient who has recovered significantly, Prior is motivated to share the details of the "great under-reported medical story of our times" for the patients who cannot make their voice be heard. Prior divides the film into subsequent parts and discusses human suffering because of ME/CFS, the historical and political insight between ME/CFS and the medical community, and the future of scientific research focused on systems biology in order to yield meaningful results. Prior receives information on emerging research and revelations on the severity of patients’ suffering who feel disconnected from society and abandoned. The documentary reestablishes the idea that more awareness of ME/CFS should be present in medical practice and research.
Plot
The documentary is divided into five parts, where Prior introduces a new theme. Within each part, Prior goes out and interviews the respective individuals related to the part's theme.
Part 1: Quiet Desperation
Prior primarily visits three ME/CFS patients, Matt Wray and begins noting how unique each case is to the patient. Through his observations, it is noted that each patient’s case develops and escalates differently from one another. Additionally, each patient reacts differently to the current treatments for the disease.
Matt Wray
Prior starts by visiting North Carolina to meet Matt Wray, who has been sick for seven years at the time of encounter. Wray has reached to the point that he mostly spends his time on a wheelchair. When Prior first interviewed him, Wray was only able to walk 100 steps a day; exceeding the amount would exhaust him completely. Due to his condition, Wray depends on his girlfriend, Charlotte, for most tasks. Not only does Prior notice that ME affected Wray’s physical condition, but it also affected the stability of his relationship.
Liz Burlingame
Prior returns to Atlanta, Georgia to meet with Liz Burlingame. Prior is greeted by Burlingame’s mother and is immediately redirected to her bedroom, because Burlingame is unable to get out of bed. Before being diagnosed with ME/CFS, Burlingame was a physically active individual who lived independently. Her days now consist of lying flat in the bed and writing, but sometimes writing is too tiring for her. Burlingame has visited dozens of doctors and has undergone various treatments; however, due to her current state, she currently depends on her parents to help her.
Jamison Hill
Prior then visits Santa Cruz, California to meet Jamison Hill. Out of the three first patients to be interviewed, Hill was independent and in a more active state. Before being diagnosed with ME/CFS, Hill was an advent weightlifter and athlete; however, his physical stamina began to decrease once he got sick. What caught Hill off guard was that at the beginning of his illness, he physically did not appear to be sick. However, simultaneously, his energy was quickly drained.
During his visit to meet Hill, Prior gets the opportunity to interview two scientists who have been researching a new biomarker for ME/CFS. According to Dr. Chris Snell and Dr. Staci Stevens, the new biomarker measures the anaerobic threshold of the patient. Measuring the anaerobic threshold allows them to measure when a patient reaches their maximum capacity when doing physical activity and how quickly their bodies recover.
Hill, a 23-year-old man, had the anaerobic threshold of a person who has a heart disease when his heart is completely healthy. For Hill, his anaerobic threshold is 110, and by just standing up from sitting increases his heartbeat to 92 beats per minute. Hill continues to explain that by doing light activity, he uses up most of his energy.
Prior visits Hill eight months later to follow-up with him, and by then most of Hill’s condition had decreased immensely, and social routine had fallen apart. Hill lost his job, his relationship, and does not have the energy to do much anymore. What bothered Hill the most was the lack of empathy and understanding from the public towards his condition.
Part 2: A Better Government
According to various news clips from American news programs such as The MacNeil/Lehrer NewsHour, showed how ME/CFS has been slow to gain credibility in the medical field in the 1980s and 1990s, for scientists and physicians alike have been skeptical. Dr. Marian Sonnenfeld, a radiologist from Boston, who at the time of Prior's interview had been suffering with ME/CFS for 22 years, expresses her overall frustration. She is frustrated with the lack of awareness and attention from the government and scientific community towards the severe suffering the ME/CFS community deals with.
Prior goes on to analyze the economic impact of ME/CFS in the United States by comparing it with Parkinson's disease. According to the statistics presented in the documentary, about 1 million Americans are diagnosed with ME/CFS, and the yearly economic losses due to the patients' inability to work are around $24 billion, which is roughly equal to the $25 billion cost of Parkinson's disease on resource loss. However, despite their similar cost on the economy, the annual National Institute of Health (NIH) funding for public research differs significantly. The documentary highlights that Parkinson's receives $139 million for research, while ME/CFS only receives $5 million, 28 times less than Parkinson's disease annual public research fund. Originally, Prior was thinking about publishing a book. However, he decided that a documentary film would be best to present the story to the audience.<ref name=":5" />
Funding for the film was initially covered through a Kickstarter campaign that Prior had established.<ref name=":6" /> In a span of a few months, Prior and Castillo were able to crowdfund $18,000 for the film.<ref name":2" /> Donations to the non-profit organization, The Blue Ribbon Foundation, also funded the film.<ref name":6" /> More than 300 individuals who donated and promoted the documentary such as journalist Llewellyn King and the executive producer of the film, Mona Eliassen-Taliaferro.<ref name":2" /><ref name":6" /> In total, the film had a budget of $120,000.<ref name=":2" />
The film was filmed from July 2013 to November 2014, a total of 16 months.<ref name":6" /> Prior and Castillo, as a two-person crew, interviewed 100 individuals across the United States who ranged from inter-disciplinary experts, top ME/CFS researchers, and ME/CFS patients.<ref name":5" /><ref name":2" /> Throughout their interview process, the filmmakers prioritized in building trust with their interview subjects because, according to them, allowed for a smoother interview where more information might be obtained.<ref name":2" /> Additional to organizing interviews, Prior and Castillo were also in charge of other essential filming tasks such as directing, producing, filming, and overseeing other employees.<ref name=":2" /> During the filming of the documentary, Prior had to visit the emergency room twice because of his slight, yet sudden relapses of ME/CFS.
The title of the documentary was influenced by the emotional experiences Prior and Castillo had while filming. The title, Forgotten Plague, was Prior's decision because he believed that it fitted for a disease that, according to him, is so severe and yet has a lack of awareness in the medical community.<ref name=":5" />
Reception
Critical
Reviews on the film began to be posted soon after the film's initial release on May 15, 2015. Bill Johnson II of the Huffington Post called the film "a must-see documentary," stating that "Forgotten Plague is at its absolute best when offering a window into the lives of those living with this condition, providing 'unheard voices' an opportunity to tell their story."<ref name=":4" /> Llewellyn King of the New York Times stated that Prior's goals in the film to bring awareness to ME/CFS "is desperately needed."<ref name":2" /> Erica Verrillo of ProHealth believes that the awareness raised by the film will inspire further research about complex diseases which "will hold the key to recovery for millions of people who have long been forgotten."<ref name":0" />
Impact
Prior ensured to send DVDs of the film to the Congress of the United States and the CDC in order to increase ME/CFS awareness. Both pledged to have their scientists and policymakers to watch the film.<ref name=":6" />
According to Prior, the documentary's story is not just a film, but it is a "movement." As a result of the film's production and release, The Blue Ribbon Foundation and The Blue Ribbon Fellowship were established.<ref name=":2" /> The Blue Ribbon Foundation's mission is to advocate for ME/CFS and encourage future scientists to research the nature of neuro-immune diseases.<ref name":2" /> The Blue Ribbon Fellowship focuses on educating future physicians about ME/CFS by including it in medical students' curricula during the summer. As a result, The Blue Ribbon Fellowship obtained "a pledge from the Dean of Nova Southeastern University."<ref name":6" />

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