User:Asanc445/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 was 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.

Written, directed, and produced by Ryan Prior and Nicole Castillo, the film was released on May 12, 2015. It is distributed by Amazon Prime Video.

Synopsis
Co-director Ryan Prior, as a journalist, sets out to investigate the reality of patients struggling with myalgic encephalomyelitis (ME) which has become to be known as chronic fatigue syndrome (CFS) after enduring a journey of his own with the disease. In 2006, Prior was suddenly impacted by the symptoms of ME; however, in the beginning, the dozens of doctors he visited were unable to diagnose or treat him adequately. After years of intense treatments prescribed by Dr. Karen Bullington, Prior was able to recover significantly from his conditions. He decides to share his story and to examine why the Center for Disease Control (CDC) has kept its research of ME/CFS at a low-scale. Throughout his investigation, Prior travels across nine states in the United States to interview various "doctors, scientists, journalists, and patients.” Prior receives information on emerging research and chilling revelations on the severity of patients’ suffering who feel disconnected from society and ultimately 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.

Prior interviews journalist and author of Osler's Web, Hillary Johnson, who provides historical insight on the investigation of ME/CFS in the 1980s by the CDC. She states that in the 1980s, the CDC reported that the samples of patients they reviewed were cases of hysteria, which was then backed by other scientists, physicians, and the media.

According to Johnson and Dr. Anthony L. Komarof f, the attempt appeared to be making ME/CFS disappear from the public eye. Dr. Komaroff was one of the few doctors in the 1980s that was interested in researching the disease and its patients in-depth. During the interview, he discusses how, after two years, he was able to publish a groundbreaking paper that studied the biological abnormalities of ME/CFS patients. Similarly, in the 1980s, Dr. Nancy Klimas published a journal stating that ME/CFS was a disease of acquired immune deficiency due to the low amounts of natural killer cells in patients.

Johnson mentions that the research journals published by Dr. Komaroff and Dr. Nancy Klimas, were ignored by the government and not covered by mainstream media. She concludes that this left the general public unaware of the reality of the disease.

Prior then includes in the documentary that because of the government's ignorance, CFS hastily got its name, which in his opinion, poorly represents the community. He explains the consequential cycle that occurs because of a poorly chosen name for a disease. A poorly-chosen name creates stigma towards a community, which leads to a lack of interest in the scientific community, which then means that inefficient research is more likely to occur. Inefficient research ends up with no new biomarker being developed to learn more about the disease, which finally leads to the inept name for the disease remaining and boundlessly repeating the cycle.

The film portrays how activists are protesting for more government attention towards CFS/ME. Protesting is shown to be difficult most of the time. ME/CFS patients depend on others to protest for them because many of them are bedridden. Therefore, the part ends with Prior reminding the audience that the only way to reveal the mysteries of ME/CFS, more passionate and empathetic people are needed for research.

Part 3: Paradigm Shift
The documentary begins to explore the process of how scientific research progresses, and how different research perspectives can attribute to improved and more informative results in research. Prior refers to philosopher Thomas Kuhn’s idea that scientific breakthroughs in research occur through paradigm shifts. The paradigm shift Prior refers to in the film is systems biology. Systems biology is the study of how components of the body, such as DNA, RNA, proteins, and other chemicals, interact with one another and how they affect an organism’s entire biological infrastructure.

With scientific research shifting more to the “integrated approach” of systems biology, more complex diseases can be studied accurately, because it allows researchers to identify trends within the changes of components’ communication relates to the development of certain diseases. In the documentary, Dr. Klimas is presented as one of the pioneers of systems biology-based research at Nova Southeastern University in Florida. She and her team are experts in genomics, super-computing, immunology, and biophysics to investigate the core, genetic issues of complex diseases.

Part 4: True Men of Science
Prior begins the fourth part of the documentary introducing Dr. Gordon Broderick, a computer scientist at the Institute for Neuro-Immune Medicine in Florida. Dr. Broderick studies ME/CFS and its close relative, Gulf War Syndrome in veterans by implementing integrated scientific techniques. He states that it his journey has not bee smooth, for he has had to deal with the consequences of insufficient funding for his research. Broderick reminisces back to a time where the shortage in funding was so severe, that he was considering research in another field. He shares the reason why he stayed in the field was because of the encounter of a tearful veteran who was grateful for Dr. Broderick’s interest in researching ME/CFS and Gulf War Syndrome.

Dr. Broderick, for his research, uses about 10,000 processing units of supercomputers to model all the different signals that are sent out across the body between its systems which he refers to as the “internal telecommunications system.” The supercomputers mimic the signals that are sent in the body by using electrical signals. Ultimately, these machines are mapping the internal pathways of the body, which Dr. Broderick has hope that it will allow them to analyze and identify areas in need of treatment.

Afterwards, Prior travels to Boston, Massachusetts to meet with Dr. Michael VanElzakker, a neuroscientist at Tufts University to discuss his published hypothesis on the pathogenesis of ME/CFS. Dr. VanElzakker hypothesizes that ME/CFS could be possibly caused by a variety of pathogens that simultaneously attack the vagus nerve in the brain. The vagus nerve, Dr. VanElzakker states, is a highway of information for areas in the body that commonly are in contact with foreign pathogens; therefore, an infection on this nerve is believed to develop a multi-system disease due to the hypersensitivity of cytokines.

Prior later visits Dr. Ronald W. Davis, Director of the Stanford Genome Technology Center at Stanford University, to discuss his involvement in ME/CFS research. Dr. Davis begins by explaining one of his main motivations to start researching ME/CFS years ago was because his son, Whitney Dafoe, was diagnosed with the disease. From there, the documentary shifts to present the current situation of Dr. Davis’ family regarding his son’s severe condition. Whitney’s family, individually describe how his physical abilities have steadily declined to the point that he has lost his ability to speak, eat, and move independently. Prior and his co-director partner, Nicole Castillo are allowed to visit Whitney in his room and observe how dire his situation is.

Part 5: The Future of Medicine
Prior interviews two scientists, Dr. Leonard A. Jason and Dr. Jose Montoya, to discuss how the future of medicine will progress with the help of new technological innovations and tools.

Dr. Jason explains that by having computers develop algorithms, technology is allowing humans to make well-informed decisions. He elaborates that computers, unlike humans, can view problems in a sophisticated manner with greater depth with the help of artificial intelligence. Afterwards, Dr. Montoya elaborates that these computational systems will allow thousands of components of the immune system to synthesize data that is waiting to be analyzed simultaneously and efficiently. Thus, they both believe that with advanced computing technology, the traces and issues of ME/CFS can be identified clearly, which would allow for improved treatments for patients.

Both scientists mention that to make a change in order for biomedical breakthroughs to be made, the mindset of how research is being funded for must change. Therefore, they explain that people, if they want a change in how biomedical research is being conducted, they must unite together and stand up to big companies. According to Dr. Montoya, effective treatment depends on the amount of resource and time involved during the research process.

Prior closes the documentary by highlighting the power of science to improve the quality of life of patients of all kinds of diseases, all through researching the forgotten realities found in the patients’ immune systems. According to Prior, the most fascinating medicine of all can be found within the immune system.

Production
Prior was inspired to film a documentary about ME/CFS in 2012, after a series of articles he published about the disease for USA Today received national attention after being "shared over 2,000 times" among readers. 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.

Funding for the film was initially covered through a Kickstarter campaign that Prior had established. In a span of a few months, Prior and Castillo were able to crowdfund $18,000 for the film. Donations to the non-profit organization, The Blue Ribbon Foundation, also funded the film. 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. In total, the film had a budget of $120,000.

The film was filmed from July 2013 to November 2014, a total of 16 months. 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. 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. 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. 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.

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." Llewellyn King of the New York Times stated that Prior's goals in the film to bring awareness to ME/CFS "is desperately needed." 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."

On IMDb, the film has 8.0 out of 10.0 rating, in which 76.6% of its users give the film positive reviews. On Amazon Prime Video, 67% of users who have watched the film have given it five stars, with user reviews stating that the film was eye-opening and life-changing.

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.

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, and the #ME Action Network was promoted. The Blue Ribbon Foundation's mission is to advocate for ME/CFS and encourage future scientists to research the nature of neuro-immune diseases. 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." The #ME Action Network is an international organization that supports advocates of ME/CFS. It supports the movement by having people recognize and understand it as a legitimate disease to promote research so that one day patients can receive "compassionate, effective care."