Two professors from Cornell University and Ithaca College are combining on a study taking on one of the world’s strangest ongoing medical phenomena, a disease that affects more than a million people in the United States yet largely remains a confounding mystery.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, commonly referred to as ME/CFS, is a debilitating disease that can often leaves its victims bedridden for months and years on end, without much hope in sight. Patients suffer a range of symptoms, marked most prominently by severe fatigue, chronic pain and flu-like symptoms, which must last at least six months before ME/CFS can be properly diagnosed. The nature of the disease, and the behavior it manifests, lends itself to doubt from observers. Victims are dismissed as dawdling layabouts, suffering from a lack of motivation or laziness instead of an actual medical condition, leading to a lack of attention and funding to address and investigate the illness.
Cornell’s Maureen Hanson and Ithaca College’s Betsy Keller, who received a $9.4 million grant from the National Institute of Health to establish a center of research on ME/CFS, may be part of a changing tide. They are one of three center grants that were funded by NIH, which is also sending money to The Jackson Laboratory in Connecticut and Columbia University in New York for research into different aspects of the disease.
Hanson, who will serve as Principal Investigator, and Keller, who will head the center’s clinical core, have assembled a team of doctors and patient advocates to recruit and examine patients with ME/CFS, and will focus on one particular portion of the disease, known as post-exertion malaise (“Post-exertional malaise” is the widely-accepted term within the science community, though patients have begun to push back against the phrase in favor of terms like “post-exertional relapse”). Both have extensive experience with ME/CFS and have spent years trying to reveal answers for those suffering.
Patients will be tested before and after exercise, in particular their blood (in Ithaca) and their brains (at the Cornell Medical School in New York City), to detect exactly what changes in the bodies as a result of the exertion and the possibility of metabolic influences, Keller said. Additionally, they will be looking at genetic material, examining the exertion’s impact on DNA and RNA transcription patterns.
Hanson said this is one of the more frustrating parts of the illness, in which exerting energy, even minimal amounts and not necessarily physical, can exhaust a patient for days afterward. It’s one of the reasons why exercising is essentially impossible while suffering from ME/CFS, and it severely impacts a patient’s ability to do seemingly small things that are necessary both to sustain themselves and try to deal with their condition.
“It’s one of the most intriguing aspects of this disease, and it’s also one of the most disabling,” Hanson said. “If even going to the grocery store or visiting the doctor makes you sick in bed for the next couple days, it’s terribly disabling.”
Hanson said traditional stigma against mental illness has hurt the public perception of ME/CFS, despite the fact that the disease isn’t even mentally based. The tide of public opinion has started to shift recently on the disease, most notably in the form of increased funding from NIH as well as cultural events like the 2017 release of Unrest, a successful documentary self-shot by a ME/CFS patient that chronicles her daily life from the beginning of her symptoms to present day. There currently aren’t any approved cures or even treatments for ME/CFS, with patients having to resort to a list of fairly random suggestions from the CDC to treat symptoms or risk following the recommendations of others with the disease.
The Solve ME/CFS Initiative, a Los Angeles-based patient advocacy organization that was included in the NIH center grant to Hanson and Keller, will serve in an advisory role for the research team particularly dealing with patient issues. After so many years of neglect, Solve Me/CFS President Carol Head said, patients know the optimism that comes with new research funding and larger budget allocations is accompanied by wariness of past failures. While she trusts Hanson and Keller, she also knows that any research now has a lot of catching up to do to other diseases of its size and severity nationwide.
“This disease has been ignored, denigrated for decades with virtually no CDC attention and virtually no NIH research funding,” Head said. “On the other hand, in the last two years we have seen some movement, so we are hopeful. But it’s just starting from such an egregiously low starting-point.”
The aura of mystery surrounding the disease is perhaps no better signified than by an epidemic of ME/CFS that actually sprung up near Tompkins County. About 90 miles north, in Lyndonville, New York, a bizarre three-year outbreak of the illness saw 214 people diagnosed from 1984 to 1987, including 46 pediatric patients. Several of those who were diagnosed at the time, by ME/CFS pioneer pediatrician David Bell, still experience symptoms to varying degrees today, and the cluster of cases, which has also occurred elsewhere, has fueled speculation that the disease is caused by an underlying virus. Other evidence points to possible genetic factors, such as certain mother-daughter connections or a group of siblings all being diagnosed.
It all feeds into the urgency of Keller and Hanson’s research, knowing full well that while they work, the plight of those with the disease goes on mainly unabated, without much in the way of relief.
“Hopefully we’ll catch something in our net here that will give us a better idea of the root cause of this, or at least help us in terms of targeting better treatments, because they’re really just aren’t good treatments out there,” Keller said.