Press Release on Special Airing of 'Unrest'

The award-winning documentary, "Unrest," showed on Independent Lens in January 2018. But Alabama Public Television did not air it on their main channel in prime time, meaning many in Alabama did not have the opportunity to see it.

Some Alabama ME/CFS patients contacted the program director, Mike McKenzie, and asked him to find another day to show it in prime time. He watched the movie and was so impressed he decided to air it on the APT Main channel on March 23 at 9 pm.

Alabama Patients then helped him to advertise this unusual event. The press release is below.

March 15, 2018
Contact: Michael McKenzie
205-451-0123 / mikemckenzie@apt.org
UNREST
Stunning First-Person Account of "Invisible" Disease
Friday, March 23, at 9 pm
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.
From the Centers for Disease Control and Prevention:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.” https://www.cdc.gov/me-cfs/index.html
 
BIOGRAPHICAL INFORMATION
 
Filmmaker Jennifer Brea
Jennifer Brea is an independent documentary filmmaker based in Los Angeles. She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. In the aftermath, she rediscovered her first love, film. Her feature documentary, Unrest, premiered at the Sundance Film Festival in January, where it won a Special Jury Prize. She is also co-creator of Unrest VR, winner of the Sheffield Doc/Fest Alternate Realities Award. An activist for invisible disabilities and chronic illness, she co-founded a global advocacy network, #MEAction, launched a global day of protest, #MillionsMissing, and is a TED Talker.

Jarred Younger
Jarred Younger, PhD, is director of the Neuroinflammation, Pain and Fatigue Laboratory (aka Younger Lab) at UAB. He moved here from San Francisco / Stanford University to set up this research in 2014. The illnesses he studies are primarily ME/CFS, fibromyalgia, Gulf War illness and rheumatoid arthritis. These are complex, multisystem diseases that cause chronic and sometimes debilitating pain and fatigue. https://www.uab.edu/cas/psychology/people/primary-faculty-directory/jarred-younger and https://cas.uab.edu/younger/

Tina Tidmore
Tina Tidmore started coming down with myalgic encephalomyelitis, aka chronic fatigue syndrome or systemic exertion intolerance disease, in 2003. She lives in Clay, Alabama. She now serves on the US Chronic Fatigue Syndrome Advisory Committee Physician Education Work Group. She has had to greatly reduce her communications services business due to her disability. She runs a Facebook support group for Alabamians with the disease. She can be reached at tina@tidcom.net.

Dr. Charles Lapp
Dr. Lapp is nationally recognized as a medical consultant to industry and the medical profession. He has written numerous articles on diverse subjects and has spoken widely, especially concerning Chronic Fatigue Syndrome and Fibromyalgia. He has been active in both civic and professional activities, the state and county medical societies, as well as the American Medical Association and the Academy of Family Physicians. In 1985, the Department of Family and Community Medicine at Duke University voted him Clinical Professor of the Year. Dr. Lapp has been a board member of the American Association for CFS and the American Fibromyalgia Syndrome Association, advisor to ProHealth Incorporated, medical advisor to both the CFIDS Association of America and the National Fibromyalgia Association.