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Forgotten Plague DVD (2016)
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Product Description
Ryan Prior’s life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat. Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery. He is shocked that millions globally remain sidelined by the same disease, many bedridden for decades. Forgotten Plague is a journey into the hidden world of myalgic encephalomyelitis (chronic fatigue syndrome). It is a chilling tale of our medical system’s failures in addressing many chronic, complex diseases. Yet it is also a riveting story of science’s remarkable ability to transform medicine and improve human life itself.
Product details
- Is Discontinued By Manufacturer : No
- MPAA rating : Unrated (Not Rated)
- Package Dimensions : 7.1 x 5.42 x 0.58 inches; 2.93 Ounces
- Director : Ryan Prior and Nicole Castillo
- Media Format : Closed-captioned, Subtitled, NTSC, Color, Digital Sound
- Run time : 1 hour and 7 minutes
- Subtitles: : English
- Studio : Reel Picture
- ASIN : B01BUOM4HG
- Number of discs : 1
- Best Sellers Rank: #191,321 in Movies & TV (See Top 100 in Movies & TV)
- #10,013 in Documentary (Movies & TV)
- Customer Reviews:
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The NINDS (HHS's National Institute of Neurological Disorders and Stroke) still doesn't list what we now call ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) or any of its previous names or acronyms ('CFIDS' [Chronic Fatigue Immune Dysfunction Syndrome] and before that 'Ramsey's Disease', 'CFS' in the US and 'ME' or 'CFS/ME' in the UK, then, for a few weeks in 2015, the IOM [Institute of Medicine]'s suggestion - promptly rejected by patients and their advocates as no better than 'CFS' - 'SEID' [Systemic Exertion Intolerance Disease]) in its OWN index of illnesses. We were moved under the NINDS umbrella (from the Office of Research on Women's Health - finally accepting that huge numbers of men suffer with it too) only last year. The work has started. There ARE bio-markers but we'll need larger studies to find the least invasive methods of diagnosis and towards broader research into subtypes and, maybe someday, cures. Our own government has finally accepted it as a physiological illness - as has the WHO (World Health Organization) for years. But we need funding to first increase education for healthcare practitioners and towards the necessary research. This film provides a step towards both.
My daughter-in-law told me she "learned a lot" about my illness and about how "systemic medicine is becoming a thing. The study of how all the systems truly interact with each other seems to be in its infancy". The study of this disease will inform ALL arenas of medical practice because it impacts all our bodies' systems at once. This film was well produced and instructive. We pray its dissemination will have an effect on government funding for research into this horrible illness and that 'Centers of Excellence' we've begged for for decades will be established all over the country for interdisciplinary study, sharing of information with other COEs and with rural and urban doctors. So far all we've seen is last year's little PDF from the IOM called the "MECFScliniciansguide.pdf" to help practitioners diagnose sufferers in their practices.
We've been serially humiliated, dismissed and ignored for far too long and the struggle has worn many of us out. Government funding for our illness was misappropriated (yes, stolen) for years. This is now known to be a physiological illness that has turned us into shadows of our former selves and has resulted in huge losses to the nation in the productivity of the formerly active people afflicted with it. The name assigned to it after the Incline Village outbreak, CFS (Chronic Fatigue Syndrome), was a public relations disaster (as Dr. Komoroff acknowledged in the film) and moved the illness into the realm of Psychiatry to be treated with CBT (Cognitive Behavioral Therapy) to 'help us' address our 'false belief that we are ill' and GET (Graduated Exercise Therapy) which pushed many of us into crashes that have further grossly disabled us for decades. Education and Research will lead to better funding within our government for the larger cohort studies that will duplicate the findings of university and privately funded (mostly by patients and their families) research of the last pitifully few years.
I am grateful to all who worked on this film and to the patients and their families who allowed Ryan and his dedicated crew into their homes. Patient advocates like Ryan and Laura Hillenbrand (in her "New Yorker" interview after her book "Seabiscuit" was turned into a movie) have done more for us than the CDC which had espoused the terribly destructive PACE study's 'results' and suggestions which did many of us great harm. We are bowled over by the fine work Laura & Ryan have been able to produce for the rest of the world, grateful to them and to people without the disease like David Tuller (also seen in the film), whose monumental effort has recently forced a review and re-examination of the flawed data in 'research' called the PACE study, based on the outdated 'Oxford' criteria and which may well have included patients without ME/CFS published in "The Lancet" in the UK which will continue to feed disinformation through more reputable journals to our caregivers until their article is finally thoroughly and publicly retracted.
Please excuse this meandering review. I ran a small successful photographic paper manufacturing company from the mid 1980s until my illness progressed beyond my ability to continue in 1998. We'd sold our products retail online in the US and wholesale throughout the world. It was our little contribution to reducing the trade deficit. Cognitive dis-function, common in ME/CFS, now limits my ability to self-edit. The few words I've just written will have me bed-bound for the next week.
Please see this film and show it to everyone you can!
COVID-19, the most catastrophic event of our lifetimes, has so many elements of uncertainty that medical professionals most often answer honestly: “I don’t know.” Consider: why do some people seem to have it, and show no symptoms?; once one had contracted it, can one contract it again?; will a vaccine be developed?; how many versions of COVID-19 are there?: And how many more mutations might occur over the next year?... the list is long. In general though, few now claim: “It is just all in your head.”
In October 2006, Ryan Prior, a vigorous high school student inexplicably lost his energy and became lethargic. His condition would eventually be labeled “Chronic Fatigue Syndrome,” with its unfortunate connotations. Another term, more medicalese, is also used: Myalgic encephalomyelitis. Prior eventually recovered, he became a reporter, and in 2015 decided to do a documentary on this medical condition which he claims affects 10 million Americans (Wikipedia states somewhere between one and two and a half million). Prior did a good job.
Few things are as compelling as listening to a spectrum of individuals tell their story. For example, there is Jamison Hill of California stating how he could once dead lift 400 lbs. Now, he says he is lucky to lift 40 lbs. Others describe how they too were quite active and suddenly they were spending much time on their backs. One woman describes going to a demonstration, waving a sign, to attract attention to CFS, but then being completely “wiped out” for two weeks. Dr. Ron Davis, who is the Director of the Genome Technology Center at Stanford, has a son who has been severely impacted by CFS, and is trying to determine the genes that might be involved. Prior also interviews Hillary Johnson, author of a ground-breaking work on CFS, “Osler’s Web.”
Prior is not very complimentary of the CDC’s standoffish response. He does go to Harvard, and finds a more sympathetic physician, Anthony Kamaroff, who now tracks the disease, which STILL has no “biomarkers,” and states that the name itself makes it more difficult to secure research funding, vis-à-vis Parkinson’s, for example. One of the interviewees says: “I hope I get cancer so people will be more sympathetic.”
Prior also mentions a couple other medical conditions, due to the anomalies involved, which receive a similar “It is all in your head” treatment: Lyme Disease and the Gulf War Syndrome. I’d highly recommend Andrea Caesar’s “A Twist of Lyme,” with the telling subtitle: “Battling a Disease that ‘Doesn’t Exist’”.
I was impressed that Prior referenced a book I had read long ago: Thomas Kuhn’s “The Structure of Scientific Revolutions.” Things do not change, we do. It sometimes requires a paradigm shift in thinking… which took four decades for Agent Orange. And for COVID-19? Well, we are all in the laboratory, watching this unplanned grand experiment.
Ryan Prior did a very good job covering yet another human aliment that admittedly I had not thought about for a decade or so. 5-stars.


