Jennifer Brea was at a restaurant when she experienced a sudden, severe wave of brain fog, and was unable to read the menu – it was like the letters were in a different language. Shortly after this episode, she was afflicted with incapacitating fatigue, part of a debilitating disease that not many people, or even doctors, have heard of – myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). Doctors don’t know what causes it, how to cure it, or even how to treat it.
31-year-old Brea, who was working on a doctorate in political science at Harvard University before falling ill, is now on medical leave. “I can’t drive. I can’t leave my house unattended, and I’m in a wheelchair,” Brea told ABC News. “Even sitting in a wheelchair is taxing for me. It is pretty much impossible for me to do what I was doing before.” She is, however, hoping to put her experiences of the unknown disorder in a documentary, “Canary in a Coal Mine,” that includes the stories of others living with ME. The film has started a Kickstarter page that has already raised nearly $100,000, twice as much as its original $50,000 goal.
The strange disease has been heard of since the 1930s, when it was described as a “polio-liked disease” that affected women. But ME remains nearly as evasive and confounding as it did in the past. Though the illness isn’t easily categorized, the World Health Organization classifies it as a disease of the central nervous system, like multiple sclerosis. In 1980, the Centers for Disease Control and Prevention dubbed it “Chronic Fatigue Syndrome,” or CFS, which it is most commonly known as. But an International Consesus Critera (ME-ICC) study published in 2011 in the Journal of Internal Medicine noted that “it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology.”
According to the CDC, several types of viral infections are listed as being potential triggers of chronic fatigue syndrome, though no studies have actually shown any direct links to these viruses. The Epstein-Barr virus, which causes mononucleosis or mono, is on the list, next to the human herpesvirus 6 infection, Rubella (German measles), bornaviruses, and HIV. Researchers still haven’t identified if one type of infection could lead to ME or CFS. Many diseases caused by the Epstein-Barr virus, Ross River virus and Coxiella burnetti can lead to a post-infection condition that may meet the criteria for ME or CFS, such as weakness and drowsiness, but might not actually develop into it. The main criteria for chronic fatigue syndrome is severe fatigue that lasts over 6 months and interferes significantly with daily activities. Other symptoms include insomnia or unrefreshing sleep, brain fog or impaired memory, muscle and joint pain, as well as headaches. The ME-ICC definition for myalgic encephalomyelitis, however, does not have the 6 month fatigue critera, but lists post-exertional neuroimmune exhaustion (PENE) as the major feature of ME.
Around one million people in the U.S. have chronic fatigue syndrome, the CDC states – afflicting more people than multiple sclerosis, lupus and some forms of cancer. The disorder is more likely to occur in women than in men, though it can affect both sexes – and it’s more likely to occur in people in their 40’s and 50’s, and in any corner of the world.
Though there is no cure or drugs to treat the disease, there are many ways that patients can manage their symptoms, such as monitoring their sleep schedule, controlling noise, light and temperature in their homes, eating a healthy diet, light stretching or exercise if possible, and avoiding caffeine, tobacco and alcohol. There are also cognitive behavioral therapies available to help develop strategies to relieve symptoms and cope with the chronic illness, and support groups that can be very therapeutic.
Dr. Nancy Klimas, a neuro-immunologist who has studied ME at Nova Southeastern University in Florida, told ABC News that the disease is an autoimmune disorder that may be triggered by an infection that was never fully overcome. And she is aware that only a fraction of doctors know of the disorder, and that in the past ME was often considered a fake or made-up disease, a psychological impairment that was all in the patients’ heads. “[T]he most difficult thing to get across to the medical community is how serious this disease is,” she said. “Patients get up for a few hours and look pretty decent and then go back to bed for a couple of weeks.”
“Being tired is not near to what I feel every day,” Jessica Taylor, a 22-year-old living in England, told ABC News. “It’s beyond tiredness. It’s in every cell of my body – a force so strong that it prevents me from doing everything and affects every aspect of my life.” Taylor has one of the most severe cases seen; she’s been in bed since 2006, when she contracted a virus and never recovered. She will be featured in the documentary.
Brea hopes that her documentary will shine light on the “invisible” victims of the disease. “I hope to touch people and in doing so to completely change the perception that the wider world has of this illness,” she told ABC News.