Forgotten Plague

 (147)
7.91 h 7 min2015NR
An afflicted journalist embarks on a quest to find out why the CDC and medical system have neglected his disease and left millions sidelined from life.
Rentals include 30 days to start watching this video and 48 hours to finish once started.
Watch Trailer
Watch
Trailer
Add to Watchlist
Add to
Watchlist
Watch and chat with others
Watch Party
By ordering or viewing, you agree to our Terms. Sold by Amazon.com Services LLC.
Write review

More details

Supporting actors
Hillary JohnsonNancy KlimasDan PetersonGordon Broderick
Producers
Travis PrestonGiridhar Subramanian
Studio
Blue Ribbon Foundation
Purchase rights
Stream instantly Details
Format
Prime Video (streaming online video)
Devices
Available to watch on supported devices

Other formats

Reviews

4.3 out of 5 stars

147 global ratings

  1. 71% of reviews have 5 stars
  2. 10% of reviews have 4 stars
  3. 4% of reviews have 3 stars
  4. 6% of reviews have 2 stars
  5. 9% of reviews have 1 stars
Sorted by:

Top reviews from the United States

CalliopeReviewed in the United States on September 13, 2016
5.0 out of 5 stars
ME/CFS is a real disease. This film will help others understand what we are too sick to tell them.
Verified purchase
Estimates as high as 2.5 million people in the US, with around 80% still un-diagnosed. My daughter-in-law watched the film two nights ago and alerted me. It is a clear look at what too many of us go through. The fact that it's free to Amazon Prime members is a boon. My husband and I gave Ryan Prior some money this past January towards getting it distributed and I'd hoped other patients might be granted free access to it once it became available online. I pray that families, friends, employers and co-workers of people with ME/CFS, government disability specialists and educators in all medical and care-giving professions are encouraged to watch it because they've only seen us when we've spent weeks pulling ourselves together sufficiently to pretend we're OK and then, only for brief visits. It's barely mentioned in the very few medical textbooks that list it at all.

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!
3 people found this helpful
John P. Jones IIIReviewed in the United States on July 5, 2020
5.0 out of 5 stars
“It is just all in your head”…
Verified purchase
A dreadful assessment when it comes from family or friends; even more so, when it comes from a medical professional. It is a frequent answer for medical anomalies – the patient does not fit a checklist of symptoms – worse still, there is no neat laboratory test that can provide a diagnosis with a suitable insurance code.

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.
2 people found this helpful
SullyReviewed in the United States on April 24, 2020
5.0 out of 5 stars
Wonderful Overview
Verified purchase
Unfortunately, one hour isn't enough time to go in the many details and history of this disease. This is an excellent way to crunch many of the important aspects into a single summary.

The failures of both the CDC and NIH with this disease can never be stated enough to provide due justice. We don't need to discover the cause to change the name of this horrible disease. Simply call it "Ramsey's Disease" in honor of the tireless efforts by infectious disease Dr. Melvin Ramsey who educated doctors around the world on this communicable disease and visited many of the roughly 100 documented outbreaks around the world. Make this change immediately to start the motion of getting things right in the medical community with this highly debilitating disease.

What this documentary failed to have enough time for is to educate the audience on the fact that we have many biomarkers for this disease, even if those biomarkers aren't unique enough from other diseases to create a diagnostic test.

Another issue not addressed is the thousands of victims of this disease who are not only affected by neglect in the medical community, but their own families. Their families do tremendous harm to the lives of those suffering because of the name of this disease, lack of informative information or misinformation disseminated, or just a cynical mistrust because of the delayed response in the body to activity or exertion. Again healing can start in these families when this disease is given a serious name.

I was completely abandoned by my family and left for dead. I’m currently homeless and severely disabled to the point I’m bedridden on average 23 hours per day. Please help keep me alive by donating to paypal.me/SaveSully and your money will go immediately to saving my life after my entire future has been destroyed by this horrible disease.

Please share this documentary with those you know as these are many of the best research doctors from around the world included in this film. Understanding of this disease starts with proper education.
Lara D HendersonReviewed in the United States on May 2, 2017
5.0 out of 5 stars
Educate yourself then Demand compassionate adequate care!..Demand to be HEARD! #MEACTION #BELIEVEME
Verified purchase
This movie saved my life last year. After many many long years of suffering.im still fighting to survive in the face of a system people directly fighting against me. I just happened across it when I felt like giving up and It saved my life and I finally got diagnosed. Though I don't know for how long bc the system is still the same and the same people still fight against me to sabotage my health and benefits. Though I know the legislators strong arm the physicians too and threaten them too but legislators have no business between a doctor and their patient's care or creating a 'database if names' to discriminate against you and if your family Disney support you and works against you it makes it akmost impossibke to survive.
If you've been sick , in pain for years with no relief, with the 'reduce your stress' or 'it's all in your head' prescriptions'. and searching for answering answers in a broken system and ignored, disbelieved or downright had physicians, friends, family, employers etc work against you, Just watch it. Migraines, IBS and Fibromyalgia are just fancy names on TV to sell medications until you really find a doctor that LISTENS and tests you properly and explains what is really happening. 15 minute medicine is killing us! Active Myalgc Encephalomyelitis (inflammation of the brain and spinal cord) can attack your thyroid, your liver, your kidneys, your brain, your ovaries, your pituitary..it can attack all your major systems. That's the Encephalopathy part....try not to wait to late.... you need a functional medicine doctor that know ME if you live in a place that doesn't have doctors that know it. They call it 'Chronic Fatigue SYNDROME' bc 'Syndrome' means a collection of symptoms...not a diagnosis of disease.... that's how the legislators get around covering you for insurance and disability.benefits. The more we learn, the faster we can affects changes for our children.
7 people found this helpful
Night owlReviewed in the United States on August 2, 2017
3.0 out of 5 stars
and a complete waste of taxpayer dollars given that both are entirely driven ...
Verified purchase
It's an important subject, certainly, but the writer/ director is no filmmaker, and should have consulted with one before putting this together. The painfully loud, mournful background music makes understanding those being interviewed near impossible, especially for those of us with the disease. I had to mute it and watch it with captions instead. The documentary (muted, with captions) does an OK job of highlighting the need for more funding and research by the CDC and NIH, which are both a joke in this Country, and a complete waste of taxpayer dollars given that both are entirely driven by the bloated egos of a few government employees, and not by solid science. The government needs to clean house and get LOTS of fresh new talents and faces involved, while putting all the current CDC/ NIH "leaders" into retirement.

What the documentary doesn't give us is information on treatments, it only seeks sympathy for sufferers instead. I've had this illness since 1979, and I have no family to help me, so I'd worked hard to find answers on my own. So far the most effective treatments for me have been bee venom therapy (using live bees, no other types of venom works), eating an anti-inflammatory "clean" vegetarian diet free of wheat, sugar, processed foods, synthetic anything, and alcohol, taking vitamin D3, mushroom elixirs and Gingko, along with handfuls of other herbs and vitamins, eating a fist sized portion of sweet potatoes daily, using a grounding/ earthing mat when around electronics of any kind, and at night, taking a magnesium supplement called "natural calm" before bed, hot epsom salt soaks, sometimes with baking soda, and micro-dosing with magic mushrooms for a week or two every few years, but be very careful about your sources for that! Due to all of these things I can remain living on my own and working part time. I wish all my fellow suffers and I will find a CURE soon, because this is no life, for anyone!
4 people found this helpful
T. J. P. HerlinghettiReviewed in the United States on May 31, 2019
2.0 out of 5 stars
An important story that’s unfortunately hard to hear, which diminishes it’s message.
Verified purchase
As a person who has been disabled for 14 years, I was looking forward to watching this, having read some positive reviews. This is obviously an important subject for me. I’m a college professor who had his career put on hold indefinitely.

My specialty is audio, music recording and audio for video. The production suffers from basic common errors made by beginning filmmakers. The music runs throughout, constantly and unnecessarily, and the level in the mix is too high. When you’re trying to hear someone speak, you need to fade it under so we can hear the dialogue and narration more clearly. At times it drowns out the . Music should be used for a reason, to add some emotional tone, make scene transitions flow, and so on. In this film it’s as though it doesn’t know if it wants to be a recording of piano instrumentals or if wants to be a film.

The narration is at a pace that makes some of it difficult to understand. For example, He said Newsweek magazine but I thought he said Music magazine. It was only when the Newsweek logo appeared onscreen that I realized what was said.

The story is well-structured and showing how this illness has ruined people’s lives is a powerful message. But the flaws in the soundtrack blunt the effectiveness of the story. Most of the information presented in this documentary comes from the spoken word, but here it’s plainly just hard to hear. It’s easily fixed. Hire a professional film soundtrack mixer, someone who can put it in music when it’s called for and just as important, when it isn’t. The film would even work better if there was no music at all. Redo the narration, and slow down.

Is my criticism harsh? Yes, but if you make a film for general release your audience gets to critique it. What I’ve written as a critical response is exactly what I would write for a student’s rough cut that I’d expect to be fixed in the final cut. I wanted this film to tell this story, it’s my own story too, and I want people to hear that story. Unfortunately, it’s hard to hear it being told.
19 people found this helpful
C CurtisReviewed in the United States on May 31, 2016
5.0 out of 5 stars
Forgotten Plague is Apt Name
Verified purchase
Millions of good people are being incapacitated by this "syndrome," yet research into the causes, let alone treatments and cures, is woefully, notoriously, even criminally underfunded. For years - decades even - AIDS research received all the attention and all the money. Only relatively recently did Hepatitis C, for example, receive the attention and funding it deserved but still too late for how many millions of loved ones? This documentary provides a glimpse into the marginalized lives of ME/CFS sufferers, their families and the few doctors and medical researchers who are trying to help. The CDC, NIH and WHO have shown a staggering, almost contemptuous, lack of interest in this illness and others like it; one has to wonder if it is because they dare not open what they suspect is a Pandora's Box of causes for which they themselves are responsible; for example, no one has ever so much as mentioned, in even the slightest whisper, the possibility of a link between ME/CFS, FMS or other modern autoimmune disorders and, dare we say it lest we be ostracized from here to kingdom come, vaccines? Certainly not. That would be career suicide in today's politically-charged scientific research communities. Whatever the cause, here's hoping this film inspires the funding and scientific focus and inspiration required to if not eradicate from the face of the earth, then effectively treat ME/CFS and other autoimmune disorders.
13 people found this helpful
Mary SchweitzerReviewed in the United States on July 15, 2016
5.0 out of 5 stars
A must watch for anybody concerned about public health
Verified purchase
This is a very important work about a disease outbreak that has been completely buried by NIH, CDC, and the UK's NHS. CDC admits that at least 1 million adult Americans have it (they have estimated 4-6 million, but I think that's too high) - and 30 years after they adopted the name "chronic fatigue syndrome" instead of the existing name, Myalgic Encephalomyelitis, 85% of patients HAVE NO DIAGNOSIS AT ALL. NIH spends $5-6 million per year on researching this disease - in contrast to the $350 million they spend on MS, which is comparable in impact but not as prevalent. They have recently announced money for new studies ... of "fatigue." Watch this and see if you agree with NIH and CDC that this disease is all about "fatigue."

From population studies out of DePaul, we know that only 1 in 10 can still work, even part time. 25% are bedridden or mostly bedridden - that's 250,000 people. Recovery is rare. "Forgotten Plague" is a difficult movie to watch to the end - but anybody who cares about public health in this country should watch it. There is good evidence that there is a contagious element to this disease. Believe me: you want to get a handle on this, before your children or grandchildren come down with it.
29 people found this helpful
See all reviews