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Friday, March 23 at 9:00pm
Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is often called an “invisible” illness because it has no observable symptoms. According to Dr. Jarred Younger, a researcher at the University of Alabama at Birmingham, at least 20,000 individuals in Alabama suffer from ME/CFS, and the majority of those individuals are not properly diagnosed. In fact, many of these individuals aren’t taken seriously by co-workers or even family members.
One courageous victim of ME/CFS managed to capture her own excruciating battle with the disease in the Sundance Film Festival award-winning film UNREST, which will be broadcast Friday, March 23 at 9:00pm on Alabama Public Television. This gripping, inside look at ME/CFS will open viewers’ eyes to the reality faced by its victims and the enormous difficulties of finding correct diagnosis and treatment.
Filmmaker Jennifer Brea was 28 years old – working on her PhD at Harvard and about to marry the love of her life – when she suffered a series of viral infections over a short space of time that left her incapacitated. She became bedbound, often in excruciating pain, and looking for answers. Disbelieved by doctors and determined to live, she turned her camera on herself and her community, a hidden world of millions confined to their homes and bedrooms by ME/CFS.
Jen began a video diary on her iPhone to convey the seriousness and depth of her symptoms to her doctors. Later, Brea asked her husband Omar Wasow and Directors of Photography to carry on filming. She saw every kind of specialist: infectious disease doctors, rheumatologists, cardiologists, endocrinologists, even a psychiatrist. Her psychiatrist told her, “It’s clear you’re really sick, but not with anything psychiatric. I hope they can find out what’s wrong with you.” Finally her neurologist diagnosed ‘conversion disorder,’ suggesting that symptoms could be traced back to a psychological trigger that she could not remember.
“I couldn’t countenance the prospect of spending the rest of my life in bed,” Brea said. “But more than that, I couldn’t countenance living in a world where we allowed this to happen. What I saw angered me, and I knew this was a compelling story. In making the film I began to uncover the layers of misogyny and assumptions that medicine and society have about female patients being unreliable narrators of their own stories.”
Tina Tidmore, who lives in Clay, Ala., is one of the thousands of ME/CFS patients in Alabama, and she hopes everyone will watch UNREST and learn the truth about the disease.
“In 2004 to 2007, I saw 7 different doctors and ended up at a clinic in Atlanta before I found a doctor who could confidently diagnose my ME/CFS and know what treatments I should have,” Tidmore said. “Surprisingly, despite all the medical and research activity in Alabama, I now must go out of state, to North Carolina, to see a recognized expert. But for many patients in Alabama, they don’t have the resources and are either still undiagnosed, misdiagnosed or not seeing a doctor and not receiving knowledgeable physician care.”
Tidmore says “People may see me attend a meeting or running errands or eating at a restaurant. What they don’t see is that for three days after that activity, I’m in bed debilitated by fatigue, headache, brain fog, and sometimes a sore throat and nausea. I leave the house now no more than twice a week, and most of the time, it’s less than that. When you see me, I look and act normal. This is why this disease is so misunderstood. You don’t see us when we are debilitated from just normal activity healthy people can do without any symptoms. In our case, activity makes us terribly sick.”
Dr. Younger, who is director of the Neuroinflammation, Pain and Fatigue Laboratory at UAB, agrees that individuals in Alabama lack treatment options. “Alabama does not have a dedicated ME/CFS clinic, and it can take years to get into some of the specialized clinics in other states. There are also no FDA-approved treatments for ME/CFS, so primary care physicians have few tools to help these individuals.”
Dr. Charles Lapp, who recently retired from a long career running the Hunter Hopkins Center in Charlotte, NC, specializing in fibromyalgia and ME/CFS, saw a number of patients from Alabama who could not find expertise within state. Lapp highly recommends watching the documentary.
“UNREST is obligatory viewing for anyone with ME/CFS,” Lapp said. “UNREST is not only a masterfully documented overview of ME/CFS, but many will find validation, consolation, and even solutions to their own situations in this documentary. UNREST is also a ‘must see’ for friends, family and caregivers because it is a first-person eyewitness account of what it is like to deal with ME/CFS. This documentary allows one to see ME/CFS from another person’s perspective, which will open your eyes to the severity and utter depravity suffered by persons with this illness.”
UNREST is part of the Independent Lens series seen on Alabama Public Television.