Students Hear of Little-Known Illness
Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, is topic at 2019 Caldwell Interprofessional Rounds.
Robie Robitaille and Rivka Solomon certainly looked healthy enough, sitting up on the stage for the MGH Institute’s annual Ann W. Caldwell President’s Lecture: Interprofessional Rounds. But what the school’s several hundred students would hear about their invisibility disability told a different story.
The two women have Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, a disease characterized by extreme exhaustion, sleep abnormalities, pain, and other symptoms that are worsened by physical activity but doesn’t improve with rest. They spend their days, weeks, months, and years primarily homebound and bedridden, sometimes unable to muster the energy to do something as simple as moving into a nearby chair. The disease can be mild, moderate or severe. Some severe patients lose the ability to talk or eat and thus require a feeding tube. Even the smallest of noises or bright light can send them into a long-term crash that can last for weeks. It’s a condition that can rob them of their jobs, social life, and joy.
“I’ve spent the past several weeks resting and getting ready to come tonight, because I know it will drain me of all my energy,” Robitaille told the audience of more than 650 MGH Institute students, faculty, and staff, plus health professionals and advocates for ME/CFS (as the disease is known). After being afflicted with the condition 16 years ago, she was forced to leave her job as a fitness coach and drop out of a master’s program in counseling psychology, eventually moving in with her parents who are her caregivers. “I’m probably not going to be able to get out of bed for a month after this.”
Solomon is a writer focusing on women and chronic illness, the result of almost three decades of being homebound and bedridden much of the time. Like Robitaille, she has become a patient advocate and an event coordinator for the Massachusetts ME/CFS & FM Association. Solomon talked about how she has been treated at times by physicians and health care workers, saying they either had medical misinformation about the disease, misdiagnosed her, dismissed her symptoms, or failed to treat her with respect.
The annual event is named after the MGH Institute’s fourth president. It presents students in six of the IHP’s post-baccaulareate degree programs successful examples of how clinical teams collaborate to provide patient-centered, compassionate care. It’s a key component of the Institute’s mission to prepare health care professionals to advance care for a diverse society.
According to Dr. Ronald Tompkins, a Harvard Medical School professor and co-director of the ME/CFS Collaborative Research Activities at Massachusetts General Hospital and Harvard-affiliated hospitals, total National Institutes of Health funded research on the condition has historically been about $6 million per year. It doubled to $12 million last year, but it’s still woefully underfunded, he said, which makes it extremely difficult to help find relief for the 1 million to 2.5 million Americans – and the 17 million to 24 million people worldwide, according to the Centers for Disease Control – who suffer with the condition.
“We know so little about this that we don’t even know how to treat it,” said Dr. Tompkins. The panelists were quick to state, however, that physicians can still help them a great deal by treating symptoms and co-morbid conditions, such as infections (viruses), orthostatic intolerance/POTS, and sleep difficulties.
Lisa Hall, RN, is a senior nurse at Northampton Integrative Medicine in western Massachusetts. She has spent the past 17 years treating patients with complex chronic illnesses, including ME/CFS, Lyme Disease and Fibromyalgia. “Events like this are very hopeful because we get to explain this to the next generation of health care professionals,” she said. “Hopefully, it will help create momentum that can lead to more research.”
In addition to the panel discussion, the audience viewed a 20-minute clip of the 2017 award-winning documentary Unrest, and submitted questions that the panel answered. Advocates said they believe this was the largest public event ever held focusing on the disease.
Video of the Event
This is the video of the ME/CFS event (everything except the excerpt from the film Unrest). Below the video there is a link to the slides that were shown at the event.