“Broken Battery”-A Story about ME/CFS
BY : ADMIN January 28, 2018
Dec. 10th, 2017
It was November 12th, Robie Robitaille woke up in the basement at her parents’ house and was ready to go for the screening of “Unrest”, a newly released documentary about Chronic Fatigue Syndrome, also known as ME/CFS. Former Harvard Ph.D. student Jennifer Brea documented her struggles in the film, as the disease was often mistaken as a psychological issue and was thus neglected by the medical world.
The same disease struck Robitaille 15 years ago when she was 26 years old, but not until two years ago did she confirm the diagnosis, through the Internet, by herself. Robitaille was in Texas by then, pursuing a master degree as a mental health counseling student. Though she only took one class each semester to lower the burden, cognition inability still affected her. “I could not read one sentence to another. So I had to drop out at the end of the semester,” she said.
She was also forced to leave her favorite jobs as a nutrition consultant and a yoga trainer. Tiredness attacked her all day long. Eventually, she couldn’t even work part-time as a waitress. Not able to earn a living, Robitaille moved from her urban apartment to a rural farm where she could live for free.
“My whole life purpose was to help people get stronger bodies and stronger minds,” she said, bearing tears in her eyes. “And this part is sad because that part of my life is completely gone right now.”
Her father, Bob Robitaille, flew over 1,734 miles to pick her up. She moved into her parents’ house nearby Boston, MA. At one point, the family thought that there would be some solution to her disease since Massachusetts was considered to have the most developed health system in the nation. But that was not the case. There were few doctors who had knowledge of ME/CFS. While there were too many patients asking for help, they refused to take any more.
“Doctors who get a reputation for being empathic, sympathetic, listening, actually trying to help and understand ME/CFS are very few in the state, maybe 30, in Massachusetts,” said Charmian Proskauer, the president of MassCFIDS, a non-profit organization advocating for recognition of the disease. Relatively, there are estimated 28,000 patients in the state who are in the same condition as Robitaille. But that is only a vague number while 84% to 90% patients are under diagnosis according to a 2015 report from National Academy of Medicine.
Proskauer contributed the lack of research partly to insufficient funding. “The disease has been underfunded for decades. Advocates like to say that NIH (National Institutes of Health) gives more money for the study of hay fever than it does for ME/CFS,” she said. Though NIH has doubled its funding allocated to ME/CFS research this year, Proskauer still feels the amount is far from enough. “They doubled it from pittance to a penny,” she said.
MassCFIDS rely hard on volunteers, most of whom are somewhat related to an ME/CFS patient. The Robitaille family have been volunteering in the organization for almost one year after they found the information online. They were excited by the release of “Unrest”. Robie Robitaille’s parents, Kathy Robitaille and Bob Robitaille, drove for nearly two hours to the Regent Theater in Arlington, and volunteered to register and guide audience at the screening.
Over 360 people came to watch the film. Among them, there were 75 healthcare professionals.
Dr. Michael VanElzakker is a researcher from Martinos Center, a research center affiliated with Massachusetts General Hospital (MGH). He has been studied on ME/CFS for over two years. After speaking at the panel after the screening, he got emails from physicians who he had never met with.