Forgotten Plague

I was happy to see Michael Van ElZakker interviewed by Ryan Prior so he could explain his Vagus nerve hypothesis. The illustrations of how the Vagus nerve works were accompanied by animation so you could understand the hypothesis without having to be science literate.

David Tuller, a Berkley Professor, made an appearance since he was the journalist who exposed the PACE Trial to a wider audience. He stated that the criteria was bringing depressed people into the study, (who suffer from Chronic Fatigue and not the grossly misnamed disease Chronic Fatigue Syndrome) and that once the Lancet or other high profile journal picks up on a bad piece of science there isn't much that can be done about it. (It is rumored David Tuller will be speaking at the Forgotten Plague Amsterdam International Screening.) Hillary Johnson, who wrote Osler's Web, gives the viewer an excellent lesson of how the CDC and other government organizations wanted to make this disease go away, the renaming process from ME to CFS and money supposedly allotted to CFS research disappeared. Dr. Komaroff apologized for his part in renaming the disease which only helped to trivialize patient suffering. He is a good doctor who wanted to do the right thing then and the right thing now.

Nancy Klimas is a former HIV/AIDS researcher and she is now working to resolve ME/CFS, GWI and FMS. Biologists, computer scientists and engineers are all working together with super computers to understand how body cells and processes speak to one another.

In 67 minutes, (not 81 as indicated on IMDb) this video can leave a viewer with an understanding of just how an illness so severe can end up not thought of being more than a mental health issue, mostly self imposed. (This is shameful to the ME/CFS patient and those who suffer from mental health issues.) This also happened to MS, Epilepsy and even AIDS. It has been happening to ME/CFS for decades.

As a note: OP pointed out blurred camera or shadows. These were patients that recorded on their own camera phones or laptops their personal experiences and are brief. Also, they could not barrel into patient homes with bright lighting as the patient most likely could not bare up under the ocular insult. There is also old news footage. Most of this shoestring $120k start to finish documentary is very clear and well lit. Additionally, any more depth to this documentary and the general public would have no interest. This is an extremely complicated disease and political issue and to cover just what happened at Incline Village and the CFS name emerging, this alone would take 1 1/2 hours.

This is the history of the disease and its politics in a nutshell. And this is just the US story.

This film is an honest, grass roots attempt to unveil a highly unknown disease to the world. Forgotten plague, despite it's inevitable flaws as a low-budget work is undeniably an incredibly beautiful film; all its inner parts (cinematography, soundtrack, patient interview, art design) work seamlessly together to tell a story from an intimate yet global perspective; a story necessary, controversial, and haunting.

I am so happy to have seen this film, and had no idea of the extent of suffering those with Chronic Fatigue Syndrome have experienced silently all around us.

Please watch this film. It is vital to our country and worlds medical and moral future, and the majority of those involved had never been part of making a film prior to Forgotten Plague.

Bravo to all those involved with Forgotten Plague. The world is bettered by your selfless contribution to those fighting with ME/CFS.

As a sufferer of ME/CFS for 11years, I was very pleased to find this film and felt affirmed, reassured, validated and hopeful after watching it! I wonder if the cluster phenomenon has been explored enough?? The Royal Free Hospital outbreak in 1955 would not have been at the newer hospital in Hampstead (opened in 1974) shown in the film but it would have been at the original hospital in Grays Inn Rd, Kings Cross which opened in 1828. Therefore shouldn't environmental factors also be considered not only for that outbreak but also for other cluster locations? The parts of this doco which spoke of the poor name for this illness "Chronic Fatigue Syndrome" are SO true! The name is insulting, offensive, misleading and an utter trivialisation of this terrible, life-altering illness!!! I just pray that those heroic, compassionate doctors and scientists continue their difficult courageous work and that their numbers increase around the World! Most of all I pray for all sufferers of this awful, invisible but life-altering disease and those loved ones who support, care for and encourage them. May hope and love increase for you and may there be real, life-restoring help in the very near future. 🙏🏼🙏🏼🙏🏼🕊

Before I saw Forgotten Plague, I was only vaguely familiar with Chronic Fatigue Syndrome (CFS). I assumed CFS was simply a feeling of constant tiredness: something that certainly had a very real and substantial impact on your life (imagine how productive you are after a sleepless night or two compared to after a good night's sleep), but one that still allowed sufferers to live normal lives. How wrong I was. In the film, one of the people responsible for naming the disease "Chronic Fatigue Syndrome", a faculty member at Harvard Medical School, apologized on camera for giving it that name, as it trivialized this debilitating disease and led uninformed people like me to vastly underestimate the severity of the illness.

The film follows young journalist Ryan Prior, a sufferer of CFS, as he travels around the country trying to understand the origins of his illness and why it has been ignored and woefully underfunded by the medical community for so long. The film points out that while CFS causes the same amount of lost economic productivity as Parkinson's, CFS research receives a paltry $4 million in annual funding, compared to over $100 million in annual funding for Parkinson's. For the one million people suffering from CFS in the United States, that's grim news.

Forgotten Plague masterfully interleaves commentary from experts and researchers on the history and genesis of the disease with heartbreaking stories from its victims. There's no barrier between policy and its effects here. One moment, we hear from research scientist about the political and bureaucratic hurdles preventing any funding increases, and the next we hear from a woman who contemplates suicide and begs for a return to a normal life. An interview with a doctor who first noticed CFS in the 1980s is interspersed with that of a young weightlifter who now struggles to even stand. For perhaps the first time, policymakers can see the firsthand results of their refusal to fund CFS research.

For us on the outside, it's easy to think of medicine as this relentless, advancing automaton that is indefinitely self-improving. Forgotten Plague shows us just how arbitrary research funding can be, and just how important it is for us to care about it. If you or a loved one suffers from an incurable disease, this affects you too. Watch this film.

As an Incline Village survivor and prototype for CFS, I felt that the film was a good representation of the disease, but very shallow on its stated mission of finding out why this disease is so neglected.

Forgotten Plague didn't cover any new ground, or ask any tough questions. Rather, simply accepting Dr. Komaroff's bland apology for a poor choice of naming the syndrome at face value... then blaming the name for all the trouble.

Dr. Komaroff's own testimony of his 1987 Low Natural Killer cell function paper proves that no one ever thought fatigue was a primary issue.

It is fairly common knowledge that, as Hillary Johnson explains in the film, that the CDC and Stephen Straus of the NIH set out to deliberately trivialize the disease out of existence... and as Hillary Johnson said, the Komaroff paper and Dr Klimas finding the same thing again in her 1992 paper, "which made her famous" was more than enough to impel medicine to move beyond any misrepresentation of CFS as little more than fatigue, or that this is a disease about which nothing is known.

Both Osler's Web by Hillary Johnson and the 1990 documentary by Kim Snyder "I Remember Me" are much more historically accurate.

If Forgotten Plague inspires people to take interest in the hidden history of CFS, it will be a good effort.

But if people accept the simple "bad name" explanation at face value without question, this documentary will actually be helping to cover up the way this disease was plagued by the CDC/NIH to be forgotten.