In late 2006, Ryan Prior, a high school junior in Georgia, got sick. He never recovered.
As a high-achieving student, as well as president of the Warner Robins student council and captain of the cross-country team, Ryan had great plans for his future. He hoped to attend Duke University and to make his mark on the world. But on October 22, all his plans came crashing down.
He felt ill that day, and staggered home with something that might have been a flu. But every morning, after 16 hours of sleep, he woke up exhausted. After two weeks he had to drop out of school. His teachers came to his home to help him with his courses and give him tests, but he could barely stay awake to finish them. Ryan saw 16 different doctors that year, but none of them could figure out what was wrong with him.
Ryan’s story is a familiar one to anybody suffering from ME/CFS – the “flu” that never ends, the confusion of physicians in whom we have placed our trust, and the ending of life as we know it.
Ryan eventually recovered enough to attend college, graduating with high honors in literature and international affairs. And when he got a job at USA Today, he took advantage of its national platform to write an article, “The real story of chronic fatigue syndrome.” The story garnered a flood of comments that astonished Ryan. It was that unexpected response that motivated him to tell his story, and the story of Chronic Fatigue Syndrome, through a medium that would reach an even broader audience: film.
The Forgotten Plague: The Film
“Imagine for a moment you are living an ordinary life … but one day it all comes to a screeching halt. You can’t remember your name, you can’t read a sentence, you can’t even pick your head up.”
With these words, Ryan Prior begins his story, and the story of countless others who have suffered the ravages of ME/CFS. His parents tell of their hopes for their son, and their frustration when physicians fail to find a reason for the sudden change in his health. When he is finally diagnosed with chronic fatigue syndrome, Ryan’s realizes his life is “on a precipice” over which he might fall, and that his entire future depended on finding the answers the medical profession didn’t seem to have.
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At that point, Ryan’s search for the truth begins, not just for himself, but for the millions of people whose voices cannot be heard.
Ryan’s quest takes him across the country, where he interviews severely ill patients, as well as those who care for them. These young people whose lives have been put on hold talk about the uncertainty of their futures, and their continual search for a cure. In several moving segments, parents find themselves unable to speak as they try to describe how the disease has affected their children. Perhaps most tragic is the story of Whitney Dafoe, appearing towards the end of the film. Whitney, a promising young photographer, became so severely ill that he was unable to speak or attend to his basic needs. By the time the film production was complete, his condition had deteriorated to the point that he could no longer eat.
One of the most valuable aspects of this film is its inclusion of interviews with expert physicians and researchers. Dr. Dan Peterson talks about Ampligen, and why is it effective for ME/CFS. Drs. Chris Snell and Staci Stevens discuss a biomarker, the anaerobic threshold, which is both diagnostic of ME/CFS and explains a great many of its symptoms, including exertion intolerance.
Those who were at the forefront during the 1980s, when disease outbreaks were recorded across the country – Drs. Anthony Komaroff, Dan Peterson, Nancy Klimas, and journalist Hillary Johnson – give important insights into the historical and political background of the disease, including its neglect by the CDC, which wanted the disease to “disappear.” The media and physicians cooperated with this view by dismissing the illness as a form of hysteria.
As a case in point, during the course of making this film, Ryan began to feel very ill with chest pains. He went to his physician, who attributed his symptoms to muscle strain and said “You are young, there is probably nothing wrong with your heart.” That attitude nearly led to his demise. He got steadily worse, until finally he was taken to the Emergency Room of a Boston hospital. There, it was discovered he had pericarditis, an inflammation of the membrane surrounding the heart which can be caused by herpesviruses, and Coxsackie virus, two viruses implicated in ME/CFS.
Paradigm Shift: Systems biology
One of the most important aspects of this film is its exploration of breaking research in a style that is accessible as well as highly informative. Through diagrams and on-site interviews with researchers the film presents complicated theories in a way that is easily understood by the lay person. Fundamental to these theories is systems biology, the study of how component parts of cells communicate with one another, as the new frontier for research into ME/CFS.
Researchers at NOVA in Florida are using such an integrated approach, incorporating genomics, immunology and computational biology in the investigation of complex diseases such as ME/CFS and Gulf War Illness. Another systems approach examines how a multi-branched nerve, the vagus nerve, can interact with pathogens to produce a multi-system disease. The vagus nerve infection hypothesis proposed by Mike VanElzakker is now being investigated as the possible pathogenesis of ME/CFS. This is groundbreaking research that holds much promise for people with ME/CFS.
The Forgotten Plague ends on a hopeful note with Dr. Leonard Jason and Dr. Jose Montoya discussing the advancement of scientific understanding through careful research and the use of advanced technology. They believe that ME/CFS can be conceptualized, identified, defined, and treated with the help of computational systems that have the ability to analyze vast amounts of data. What comes out of such research will hold the key to recovery for millions of people who have long been forgotten, but for whom hope remains in the “infinite expectation of the dawn.”
The Forgotten Plague can be purchased in the ProHealth store