Unrest is Jennifer Brea’s story. She’s a victim of chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME). But it isn’t just Jennifer’s story. She finds a way to connect with other sufferers from around the globe and document their stories, too.
Jennifer Brea was a PhD student at Harvard when a high fever hit her at age 28. It left her bedridden with ME, a condition many doctors don’t consider real. They think it’s mental. Hysterical. A woman’s hysteria.
Jennifer and her husband Omar Wasow, also a Harvard PhD, basically dealt with her condition on their own. They went to many doctors, none of whom were much help. The sad fact is, doctors have no idea what to do about ME. They often consider it untreatable and incurable.
Jennifer began filming herself. She said, “People need to see this.” She used her computer to find others around the world with ME. She began filming them, too. She learned there were millions of people, mostly women, who were confined to their beds like she was.
She talked to doctors and immunologists. Neurologists. Doctors who thought in was all in her head.
She tried all the cures anyone suggested. Green drinks, mold avoidance, certain foods. Those ideas were no more permanent help than the baskets of drugs she had at her bedside.
As Jennifer talked to other ME victims and learned their stories, she realized that millions of people were languishing away in bedrooms, their lives unlived, their dreams unfulfilled. She termed them “missing.” People didn’t even know they existed because they never saw them. ME sufferers never get to do the things they want, go the places they want, be who they want to be.
Places like the CDC provided almost no funding for the study of the disease. In Denmark, people with ME were snatched from their homes and treated as mental patients, not allowed to see their families. The disease is not understood.
Jennifer was moved to try to do something to bring attention to ME, especially to the institutions that could provide funding and research into the condition. She organized a worldwide day of protest. Families, friends, and even some ME sufferers in wheelchairs and on cots gathered in strategic locations around the world. They created a display on the sidewalks of empty shoes. Each pair of shoes had a name attached to a tag that named what they were missing.
The displays were so moving. If you’ve ever seen the AIDS quilt display, you’ll get an idea of the emotion attached to those displays of empty shoes.
Jennifer is still fighting, still hopeful. But as the song that plays over the end credits says, “There is no end to this story.” Jennifer Brea and millions like her are still suffering from a disease that needs research and attention. I urge you and everyone you know to watch this documentary and use it to educate others, especially others in control of the funding to work toward an understanding of ME. Let this film help create change.
And to Jennifer Brea and anyone with ME, hang in there and keep your hopes up. We need you all.
Jennifer Brea and Kim Roberts wrote Unrest. Jennifer Brea directed it.
Discover more from Old Ain't Dead
Subscribe to get the latest posts sent to your email.
I think this is the first blog I’ve seen that specifically lays it out that Jen Brea “tried mold avoidance”,
but it wasn’t a permanent fix.
Which, of course, leads to dismissal as being of limited value.
To me, what is most important that when the CDC and researchers from all over the world were trying to
make sense of the strange disease which often occurred in clusters within certain buildings, none of them
brought up the proposal that mold might be a factor.
When the sick people brought it up themselves, doctors and researchers dismissed it.
Not just while they thought it over for awhile, but for decades, completely shutting down the idea that mold might be more than just an allergy.
But look at where the dreaded “Toxic mold” is today! Possibly just as famous as CFS is.
And yet to this very day, despite the documented presence of Stachybotrys Chartarum in the very places where
the clusters of “Mystery Malady” happened, and that this very substance IS relevant to Jen Brea’s health, at least to some degree…. this component has never been investigated by any CFS researchers at all.
Zero. None.
I’m fairly certain this is not the proper way to “do science”
So many things about this disease, not just the possible mold connection, are untested and unexplored. I think all kinds of research is needed.
Thanks for writing this article and spreading the word about our disease. I would like to provide feedback on a few things. I have ME and don’t like being referred to as a “victim.” I’m a person with ME and fight everyday to stay alive. Also, Millions Missing was the brain child of Stacy Hodges, a woman living with ME. The success of Millions Missing required the work of people all over the world. Unfortunately, that is left out of the film and gives the incorrect narrative about how millions missing happened.
Pingback: Review: Brain on Fire - Old Ain't Dead