Forgotten Plague

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. 🙏🏼🙏🏼🙏🏼🕊

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.

I know it's about real people with real problems and real suffering, and it might seem cruel to analyse this title merely for its content, but good documentary filmmaking is about getting to the core of the subject, while keeping it interesting as well as informative to the viewers, even when the subject is dense, complex and dull, like this, which is all 3. Still, this movie fails in every aspect. Furthermore, the quality of editing, video and audio is beyond amateurish. crossing into "just bad" territory. Enduring through all the technical flaws, what is left is a bunch of people whining about not enough being done, while showing a lot actually being done.

Very poor and very patronizing towards the patients. Mr Prior seems to think he is the only one who can write and that he alone represents the ME community. "I had the skills to tell this story" Most people do not have access to the doctors he had access to. It is also not the first film to tell the CFS story as claimed.All that has been well covered. Camera work blurred and overexposed in places

Documentaries such as this which focus on patients are of little use. They are not scientific and record mostly subjective patient experiences with clips of doctors now and then. What is needed is a scientific documentary focusing on the research and maybe a clip of patient now and then

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.