More Than a Gut Feeling
Chronic fatigue patients raise funds for microbiome study by Ian Lipkin
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.
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
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
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."
Donate to Dr. Lipkin's ME/CFS study.
* Sarah is a pseudonym.