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Unrest: a Personal Documentary That Really Hits Home

February 1, 2018

This is a personal and passionate plea for everyone to see the documentary Unrest. It premiered at the 2017 Sundance Film Festival where it won the Special Jury Prize for Documentary Editing. It also made it to the top fifteen shortlist for documentaries eligible for an Oscar. The DVD is available for checkout at the library and is also available on Netflix for viewing. Jennifer Brea, the director, producer and author of the film, shares her journey of living with the medical condition, Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), more commonly known as ME/CFS. This illness impacts every facet of Jen’s life. The view of her personal struggle is heart wrenching and awe inspiring at the same time. She is a champion in my eyes. Knowing her condition as a mother of a daughter who has ME/CFS, one can only be amazed at her inner strength and perseverance to be able to complete this daunting project and to have done it so beautifully. I can’t help but be concerned over what this may have cost her in terms of her own health.

You will be amazed at Jen Brea’s foresight to begin recording early on in her experience with ME/CFS. She holds nothing back. She kept her camera going through her most vulnerable moments. Through her use of the web, Jen enlarged her world exponentially; communicating with others worldwide struggling with this illness (including my daughter), organizing demonstrations to raise awareness, and speaking with researchers about current developments and ongoing funding needs. This documentary has the potential to break down the walls of the medical world and to shake up those who decide how the limited research money will be allocated. The incredible determination of those in this film and the strong woman who created it will hopefully move you to take action.

Right now this illness is going unnoticed by most of the world. That’s why the most recent demonstration of ME/CFS patients was called Millions Missing. At the global protests, pairs of ME/CFS patients’ empty shoes, along with a brief bio, were displayed in front of the Department of Health and Human Services Offices in many cities throughout the world. Patients, Caregivers and family members demanded that this illness no longer be ignored. ME/CFS needs immediate attention. I sent my daughter’s black poke-a-dot shoes to Chicago.People with ME/CFS are often unable to make the herculean effort of demonstrating in person. They struggle with the most basic functions of life. Their voices have gone unheard. They are too ill to get out of bed. 25 percent of ME/CFS patients are housebound or bedridden. Their condition is often brushed off as being psychosomatic. I know it is not that. I witness it every day.

My daughter, Karina, came down with ME/CFS after she was ill with Mononucleosis. That was in 2014. Today she is housebound and frequently bedridden. She hasn’t left the house except for doctor’s appointments since July of 2016, when we took her for a drive to see the sunflowers at Pope Farm Conservancy. I didn’t know that would be the last time she would be able to endure an outing in her wheelchair. She suffers from debilitating pain all over her body. She tolerates neither noise nor stimulation. She is allergic to nearly all foods, scents, chemicals and most of her medications. She suffers from post exertional malaise (PEM). PEM is one of our greatest challenges. The littlest bit of physical exertion will set Karina back for weeks. That last outing to see the sunflowers cost Karina dearly by worsening all her ME/CFS symptoms. Her body just doesn’t use energy the way it should, and yet her mind works and works to solve the mystery of ME/CFS.

Karina is a brilliant researcher. In four years she completed her Bachelors and Masters Degrees, earning degrees in Neuroscience and Biology. She should be in her 2nd year at Tufts University School of Medicine where she was accepted as a sophomore in college on the early assurance program; instead she is imprisoned in a body that fails her at every turn. I won’t go into any more detail. It will only make me weep.

We need to do more than cry. We need help! We need money for research to better understand the pathology and to develop effective treatments. ME/CFS research is underfunded, at only $6.00 per patient. The  National Insitiute of Health’s Research portfolio shows the disparity of funding in great detail. I beg you to see this documentary. Tell your family and neighbors about the documentary. If you are so moved, please support the research effort by making a donation to the Open Medicine Foundation, whose advisory board includes three Nobel Laureates and six National Academy of Science members who are assisting in the search for biomarkers, and treatments for ME/CFS. Visit www.unrest.film/time-for-unrest to see how you can make a difference in the lives of those who suffer from ME/CFS. Please sign the petition insisting that the National Institutes of Health increase research funding for ME/CFS.

If you are interested in reading more about ME/CFS, the Institute of Medicine’s guide will provide more detailed information. I wish I could tell you there is a cure. But to date there is no real treatment or cure. This disease is so complex; it impacts nearly ALL systems in the body, including the circulation, metabolism, digestion, immune system, and nervous system. It impacts all functions of the human body. The exact array of symptoms and limitations manifests itself differently from patient to patient. Universally, everyone gets worse with physical and mental exertion (PEM).

Currently, estimates show that 2.5 million American have ME/CFS. Global estimates are as high as 17 to 30 million. No one is protected from this illness. It can take over your life or the life of a loved one. ME/CFS has claimed my daughter. I want my daughter to have her life back. I want Karina to have a life outside of her small bedroom.

I pray that this documentary will speak for the “millions missing” and their families. To all who hear my cry, to all who know our struggle and have helped us, to all who have already watched the documentary, please know how much you are loved! For those whom I’ve persuaded to view Unrest, THANK YOU from the bottom of my heart.

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2 Comments leave one →
  1. Terri Lannan permalink
    February 11, 2018 5:51 pm

    Just watched Unrest. I can’t believe how little is known about a disease that affects so many! I hope this wonderful movie and the people who are fighting this disease will help to open up the path to finding a cure!

    • Sandy Wagenpfeil permalink
      February 12, 2018 3:30 pm

      Thanks for watching Terri! We really appreciate it.

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