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The average person knows how debilitating exhaustion can be, but what if the exhaustion never ends? That’s what the documentary, Forgotten Plague, showing at the Madison Arts Cinema on Saturday, March 26, will explore as it investigates the illness know as chronic fatigue syndrome, an illness that affects nearly two million Americans.
Chronic fatigue syndrome (or myalgic encephalomyelitis) causes severe exhaustion that is made worse with physical and mental exertion. While the effects of the illness can be quite extreme, very little is known about the illness in medical communities, a problem Madison resident Laura Furey is working to fix.
Furey, a 2008 Daniel Hand High School (DHHS) graduate, was diagnosed with the illness in her early 20s after many misdiagnoses. She said she has seen first hand how the disease has fallen through the cracks.
“I first got sick after getting mono when I was 20 and it slowly progressed and worsened,” she said. “I then got a stomach virus and after that I was left pretty debilitated. It took me two years to get a diagnosis after seeing many providers from many specialties while my health continued to decline.”
The illness can causes autonomic nervous system dysfunction including sensitivities to light and sound, gastrointestinal problems, orthostatic intolerance, and cognitive issue—and that is just the tip of the iceberg, according to Furey.
“Diagnosis is difficult and takes a long time as it is a diagnosis of exclusion. Many things must be ruled out first,” she said. “There are currently no approved treatments for CFS,” but some patients benefit from treatments that target sleep disturbances, antivirals, immune modulators, vitamins and supplements, and lifestyle modification.
With no clear treatment in place, nearly a third of medical school programs don’t even include the illness in their curriculum, according to Furey.
“I can’t tell you the amount of rude remarks or lack of understanding I have gotten from medical professionals and non-medical professionals alike,” she said. “It has taken years to even get it recognized and there is still a lack of recognition by many in the medical field or it’s simply seen as psychological or just not a true illness. So many people are undiagnosed for this reason and so many don’t have a voice because they are so sick.”
To combat the lack of understanding and raise awareness about this illness, Furey reached out the Arts Cinema to show the documentary in town. Furey says the documentary really dives into the complexity and the mystery of the illness.
“It exposes the devastating effects of the illness as it interviews numerous people affected, doctors, scientists, and patients’ family members,” she said. “It also finds some potential breakthroughs that may help with diagnoses and treatment in the future.”
Furey said she is feeling better now, but is determined to give back. Tickets for the documentary are $5 and all proceeds will go to Solve CFS, a research organization.
“Its so much more than fatigue,” she said. “It affects so many systems in the body. The illness costs up to $24 billion a year in costs and lost productivity. Change is needed.”
Forgotten Plague will be shown Saturday, March 26 at 11 a.m. at the Madison Arts Cinema. Tickets will be sold at the door. Anyone interested in donating or learning more about Chronic Fatigue Syndrome can visit at http://solvecfs.org/donate.
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