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Forgotten Plague: A Movie Review

July 4, 2016

 

 

And now for something completely different: a movie review! I’ve recently become aware of several documentaries that have been made about chronic pain and illness, so I figured a viewing was in order. Since I live with and write about myalgic encephalomyelitis (ME) regularly, why not review a movie about ME? Forgotten Plague is a film about:

 

  • Myalgic Encephalomyelitis (ME)

  • aka Systemic Exertional Intolerance Disorder (SEID)

  • aka Chronic Fatigue Immune Deficiency Syndrome (CFIDS)

  • aka Chronic Fatigue Syndrome (CFS)

 

To give you some background, here is the filmmaker’s summary of the movie:

 

“Forgotten Plague is a journey into the hidden world of [ME]. 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.”

 

If you’re interested in watching the trailer, here it is:

 

So what did I think of this movie?

 

My first thought on watching it was that, if you have ME, it would be a great film to show people in your life in order for them to better understand what you are going through. We don’t generally know much about ME in North America because it really is an invisible illness and a hidden disease . People with ME tend to stay at home, conserve their energy and retreat from life (not by choice, but by necessity). And there is very little in the way of activism or awareness campaigning around the illness, after all, we’re all too tired to protest, shout, walk, demonstrate, or take action!

 

My second thought was that this movie focuses a lot on worst case scenarios. I have ME, but it’s not nearly as severe as it is for many people in the movie. I though the movie could have addressed the fact that the illness exists on a spectrum, and that a) there are people who do recover to some extent, and b) we can go into periods of so-called remission for various lengths of time.

 

That being said, I do think it is important to show just how serious this condition can get, because many people (including doctors) still believe ME is something that’s “all in our heads” and that we “just need to get over it.” It is an eye-opener as to just how devastating the illness can be.

 

 

This documentary was created and narrated by Ryan Prior, a lovely man who suffers from ME. He brings a lot of warmth and compassion to this project, and has created quite a remarkable work, especially considering his health condition. I found him to be very relatable, articulate and insightful.

 

Here are a few more points that struck me about the movie:

 

  1. This movie brought up the feelings in me that I had when I first developed ME – the sadness, confusion, fear, uncertainty, helplessness and frustration. The enormity of it struck me all over again.

  2. Seeing the touching concern and strong support of parents whose children have ME really hit me in a soft and very sore spot. It was heartening to see that many people with ME have such wonderful support and advocates, which is in stark contrast with the reaction and treatment I received from my family.

  3. ME tends to occur more commonly in women, but it is not exclusive to us. In this documentary, quite a few men where shown suffering from the illness, which is helpful in challenging the stereotype that this is a “woman’s disease.”

  4. I really wish the healthcare system in Canada were more proactive in doing more extensive medical testing. I would be really curious to find out more about what is happening biologically in my body. Unfortunately we’re a bit behind in Canada when it comes to diagnosing and treating ME. I am hopeful that this is on the verge of changing.

  5. Research is being done, even if I’m not always hearing about it. At least one biomarker of the illness has been identified (ME patients have a low anaerobic threshold – patients crash if their hearts reach a certain rate). It’s progress. There are scientists and researchers out there who are working to help all of us with ME, and knowing that is encouraging.

 

All in all, I thought this movie was well done, and would recommend it to anyone living with ME and their loved ones. The more we get the word out there and increase awareness, the more likely we will find a cure.

 

You can find out more about the movie and watch there whole thing it HERE

 

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