The movie is called “Unrest.” The unrest of the title is one of the many symptoms of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, often expressed as ME/CFS. It is at one level a touching love story and at another, where its real purpose lies, a cry to be heard.
This mysterious, debilitating disease affects maybe 1 million Americans and has no cure, is hard to diagnose, and there is no therapy other than attempts to alleviate the worst symptoms. It is a disease of the immune system. To get it to have normal life confiscated and replaced with bare existence, pain, confusion and fatigue, which is not ameliorated by sleep, hence the unrest.
Dr. W. Ian Lipkin, who directs The Center for Infection and Immunity at Columbia University, and who has been described as the nation’s leading virus hunter, says that ME/CFS may be like cancer: one disease in many forms.
Dr. W. Ian Lipkin, who directs The Center for Infection and Immunity at Columbia University, and who has been described as the nation’s leading virus hunter, says that ME/CFS may be like cancer: one disease in many forms.
“Unrest” is not the first ME/CFS documentary but, to me, it is the most compelling. Actually, it is a compelling movie in its own right and someone with no interest or knowledge of the disease would find it engrossing — and damn good entertainment.
The movie, which has been entered for an Oscar in the documentary category, and premiered at the Sundance Film Festival, is the work of Jennifer Brea and a team of very able professional moviemakers. But Brea is the star, the producer and the director. She also is a severely impacted victim of ME/CFS, and the suffering you see on the screen is not a reenactment.
The key to the movie is home footage shot by Brea and her husband, Omar Wasow, as she fell ill. It opens with Brea in extremis crawling across a floor, flattened and in pain. It has a fine admixture of the horrors of the disease and the joy and love of her restricted life with Omar.
The key to the movie is home footage shot by Brea and her husband, Omar Wasow, as she fell ill. It opens with Brea in extremis crawling across a floor, flattened and in pain. It has a fine admixture of the horrors of the disease and the joy and love of her restricted life with Omar.
The film scores many firsts, one of which, to the best of my knowledge, is it has been certified for continuing education credits for doctors. For a movie that is entertaining as well as instructive, this is an achievement. At an upcoming showing in Atlanta, the audience will be made up entirely of medical professionals getting continuing education credits.
This is major because the disease is not part of normal medical education syllabuses, greatly exacerbating the diagnosis problem. The film makes a strong point about the inclination of medical establishments to treat this very awful physical disease, with its endless suffering, as a psychological one. One of the most harrowing scenes in “Unrest” concerns the arrest in Denmark of a wrongly-diagnosed patient, Karina Hansen, who was forcibly removed by the police and confined in a clinic without recourse for three years. Her parents were denied access for the first year. This is an extreme example of the cruelty when somatic diseases are diagnosed as psychosomatic.
For seven years, I have covered ME/CFS and its devastation: the broken marriages, teenagers who cannot go to school, and patients who must lie in dark silent rooms, wondering why they must live. In the course of my reporting, I have received thousands of emails from around the world, describing the loneliness and the daily hell of living with ME/CFS. Most patients I find go through periods of extreme incapacity and then a life where every effort has its price: One woman in New York knows that dinner with friends will bear a price of three or more days of exhaustion and bed confinement.
I have interviewed young women who clearly will never see a wedding day, men who may never know the enchantment of love, and parents who suffer the special agony of having to take care of children who cannot help in any profound sense.
Because of the ignorance of ME/CFS in the medical profession, the minuscule funding for research from the government, through the National Institutes of Health and the big foundations, I salute the arrival of a movie that may shake up a complacent world.
Some years ago I started, along with my friend and ME/CFS suffer, Deborah Waroff, the YouTube channel ME/CFSAlert. Our motto was comfort the patients, educate the doctors and shame the government.
“Unrest” does the job on a grand scale.
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It is not difficult to diagnose M.E.
According to Dr Charles Shepherd (ME Association) if you have a patient, usually in 20s or 30s (although children can be affected too) is struck down with a flu like virus and never recovers; is exhausted from very little exertion, has muscle pain, unrefreshing sleep etc and this all lasts more than 6 months (with no other explanation) you are looking at M.E
I am so grateful that this film has been made.
Brilliant article . The state of denial is worse in uk with the CFS psychiatric mafia of simon wessley , peter white and michael sharpe constantly telling the establishment its all in the mind . Its really trrrible to see the effect of this on ME patients
Thank you for an accurate and well written review of a profoundly important film.
Thank you this article is spot on. My sister suffered from ME for 30 years and we were on a lost lonely journey. She recently oassed and I know she is cheering this movie on from the heavens.
A very well written commentary about our illness(es). So many of us are also impacted with other very serious problems…in my case cysts form inside my spinal cord & I had a condition wherein the skull was too small to hold the brain and it had to be enlarged. For a long time I kept thinking the latter conditions caused so many of my problems. 30 yrs. later I still suffer and probably will until the end of my life. I’m in the 70+ age now, so anything I do is for those who are younger than I am. I so want them to have the lives they should be having. This documentary is the first really hopeful sign I’ve seen in all of these years. It’s a tough thing for us to live with, but it’s also devastating to our families. Shame on the CDC & NIH…so many wasted years and wasted lives.