May 12, 2014—Sarah*, an MIT computer science grad, first got sick while working on a software project for an international NGO. Severe cognitive and gastrointestinal symptoms were the first sign of what would eventually be diagnosed as chronic fatigue syndrome. “I went from running a triathlon to being unable to sit up for more than 15 minutes,” she remembers. “I had a promising career working and volunteering in areas that I was passionate about, and now my life has primarily become about survival.”
Sarah is one of more than 17 million people, including one million Americans with the disease, which is also known as myalgic encephalomyelitis, or ME/CFS. On May 12, patients and their families mark International ME/CFS Day, but sadly there is almost nothing known except that the disease involves the immune system and comes on with flu-like symptoms or collapse following exercise. The medical community remains baffled, and some even deny it exists or pigeonhole as a psychological disorder.
Donors from 20 countries have given to the patient-driven campaign at MicrobeDiscovery.org
Patients want answers. Battling through debilitating exhaustion and “brain fog,” Sarah and a group of patients around the world are rallying to raise funds for an ambitious new study led by Ian Lipkin, MD, director of the Center for Infection and Immunity at the Mailman School. So far, they have brought in more than $55,000 from nearly 400 donors in 33 states and 20 countries through the website MicrobeDiscovery.org.
In 1997, Dr. Lipkin was recruited by scientists at the Centers for Disease Control and the Karolinska Institutet to lead a study looking at whether Borna Virus was the cause of ME/CFS. It wasn’t, but Dr. Lipkin was struck by the fact that three-quarters of the patients had evidence of immunological abnormalities. “I was intrigued, and thought that resources should be invested in looking at other infectious triggers of disease,” he says. More than a decade later, in 2010, Dr. Lipkin was called on again, this time by the National Institutes of Health, to analyze prominent studies that had implicated two viruses—XMRV and pMLV. Like borna virus, they were ruled out. But Dr. Lipkin’s search has continued, funded by the Hutchins Family Foundation.
The clues have been leading to the little-studied ecosystem of microorgansisms we carry around in our guts known as the human microbiome. Dr. Lipkin’s team has already found microbiome abnormalities in colon cancer, stillbirth, and autism, and he believes the microbiome is a fertile area for ME/CFS for the reason that the gastrointestinal tract is important in modulating immunity and has been implicated in several autoimmune disorders. The ambitious new study, already outlined in detail, would examine viruses, bacteria, and fungi that may play a role. Once the culprit is identified, new treatments using drugs, probiotics or a modified diet could come quickly. "I think that the microbiome is going to be where the action is,” says Dr. Lipkin. “I am really eager to pursue that work."
Patients, many who have gastrointestinal symptoms, are convinced that the microbiome will bring answers. Amy, a former occupational therapist from New Zealand and member of the fundraising team, says, “I don’t think the gut and immune system connections have been looked into enough in general and also the gut-brain axis. This is an exciting area of research and we get to be part of it.”
* Sarah is a pseudonym.