Ryan Prior, the director, Co-writer and producer of the documentary Forgotten Plague, begins the film by issuing an invitation: walk a mile in my shoes.
Doing so means enduring a fight with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) beginning in late adolescence. A battle which took Ryan from a highly-active student-athlete to spending most of his time at home, often struggling to leave his room. After a grueling mission to find relief he is finally placed on a treatment regimen which reduced his symptoms and restored some of his mobility. Despite an intense treatment protocol, he continued to experience physical and emotional debilitation.
This is Ryan Prior's story, however, he is not alone.
One million individuals are diagnosed with ME/CFS (commonly called Chronic Fatigue Syndrome) in the United States alone. Total cost when health care and lost wages are considered is said to be 24 billion annually. Furthermore, women, African Americans and Native Americans are said to be at increased risk for developing the disease.
The film also points out inadequacies in diagnosis, assessment and treatment of ME/CFS which are due to several factors including lack of government funding for research on the disease, medical practitioners historical refusal to legitimize the condition, heavily reductionistic focus which often dominates mainstream professional health care practice and subsequently failure of the U.S. (and I would argue most western countries) to integrate so-called non-traditional healing practices into regular treatment recommendations.
Forgotten Plagues is must see TV, particularly when telling the stories from individuals diagnosed with ME/CFS.
One of the most powerful testimonies in the film is that of Jameson Hill; a bright-eyed, personable, physically fit personal trainer. When first interviewed Jameson he has been diagnosed with CFS for four years and discusses his treatment regiment and methods of coping. Although he appears slightly melancholy, his demeanor predominantly exudes hope, optimism and focus. He has a strong voice and occasionally smiles even while describing changes he has been forced to make due to the disease.
A second interview takes place eight months later and Jameson is vaguely recognizable. The immobilizing impact of CFS is apparent and Jameson acknowledged that taking even short walks are now exhausting. During the interview he is shown slouching in a chair with his feet reclined. His facial expression is tired, heavy eye lids nearly covering his eyes, his voice lowered and speaking pace dramatically reduced. Although Jameson never reported experiencing depression, his body language, tone of voice and posture indicate emotional debilitation. He has lost his job and his romantic partner due to the disease and one cannot help wondering if Jameson is also losing hope.
Jameson's case is not the most severe or longest course presented in the documentary. There are interviews with individuals suffering for more than 20 years. Later we are presented with an individual for whom sound, light, or touch intensifies his pain. Still, other individuals have gone from highly functional to experiencing too much pain to get out of bed. Also important is the impact ME/CFS has on families and friends watching their loved one deteriorate, feeling helpless to intervene.
"It's been slow to gain credibility as a real disease in public and more disturbingly for sufferers, among doctors."
In addition to coping with disabling pain and emotional trauma, sufferers are too often viewed as 'faking it' or psychologically disturbed by a public lacking awareness on the disease. As one person in the film stated "sometimes I even hope that I get cancer" at least then his suffering would be met with understand and compassion as opposed to marginalization. This is another strength of Forgotten Plague, providing education on the nature and multi-fold impact of ME/CFS which directly contradicts existing stigmas and stereotypes. Those afflicted are not faking it, or lazy and the pain is not 'all in their head'. They are overcome by a debilitating disease which varies in symptomology and has shown remarkable resistance to treatment.
Forgotten Plague also offers a coherent description of the signature features of the disease which include neurological, autonomic, endocrine, and immune dysfunction. This description alone is a far cry from conventional thinking that this condition is little more than occasional fatigue. Still individuals with this disease are also at risk for developing depression and other mental illnesses due to the debilitative nature of ME/CFS. As a result this documentary is critical for enhancing public and healthcare awareness of ME/CFS; I believe Forgotten Plague is a must watch for these reasons.
Forgotten Plague balances scientific data with personal narrative and socio-historical context providing moving stories and up to date information about ME/CFS. To be clear, Forgotten Plague is easily relateable lending itself to the public at large. The documentary sheds light on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a complex disease which is not well understood despite the fact that millions are diagnosed with this debilitating condition. The film breaks down contemporary scientific understanding and treatment of ME/CFS offering hope of relief for sufferers. 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.
For more information on the documentary "Forgotten Plague" visit http://www.forgottenplague.com/
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