Tireless work on chronic fatigue syndrome ic news ithaca college

In the early 2000s, seven decades after chronic fatigue syndrome (CFS) was first recorded by doctors , those who suffered from the disease still struggled to convince the world th at something was physically wrong with them. Then as now, the disease — known outside the U.S. as myalgic encephalomyelitis ( ME ) — had no diagnostic test, no biomarker or telltale biological sign that the sufferer was ill, and no treatment approved by the Food and D rug Administration .

But in Southern California, a group called the Workwell Foundation had been success fully ver ifying ME/ CFS by having patients complete two consecutive standard VO2 max tests , which measure the maximum amount of oxygen a person can use during intense exercise, to gauge cardiovascular fitness and aerobic endurance .


Where healthy people and those with other illnesses are able to reproduce their first-day performance on day two , those with ME/ CFS ha ve significant drop – off s .

For patients, the se results can provide proof of the illness to medical professionals and the insurance companies that oversee disability policies. Word of the approach’s success spread quickly among ME/ CFS sufferers. Among them was a friend of IC exercise and sport sciences professor Betsy Keller . Keller and her fri end had been out of touch for a while when in 2003 the friend approached Keller about conducting a VO2 max t est. The friend believed she had ME/ CFS , but couldn’t afford or physically endure a trip to California, the nearest place that offered the test .

Keller agreed to have her in for dual sessions on the e xercise and s port sciences department’s VO 2 max test equipment . “On day one, she tested like a low fit ness person who was inactive and not doing too much,” Keller said. “On day two, I looked at the data and immediately checked the equipment thinking it was out of calibration. The test made no sense. How could measurements drop so precipitously? But in fact, the equipment was not out of calibration. What I was seeing was real. ”

“That was the beginning,” Keller said. Fifteen years later, she has tested about 150 patients giving her a depth of experience with the disease that is shared by a select few . Now she is among the leaders of a new ME/CFS collaborative research center based at Cornell University and encompassing seven other institutions, including IC, funded with a five-year , $9.4 million grant from the Nation al Institutes of Health (NIH ). The center at Cornell is one of three that the NIH estab l ish ed last fall ; the other two are based at Columbia University and the Jackson Lab oratory for Genomic Medicine in Farmington, Conn ecticut . A D ata M anagement and C oordinating C en ter at Research Triangle Institute (Research Triangle Park in North Carolina) , has also been awarded an NIH grant to manage the findings of the three centers.

T ogether t he centers are undertaking a multifaceted five-year study that is arguably the most comprehensive research effort to date — some would say the first comprehensive research effort to date — to find the cause of the disease. Keller leads the “clinical core ” of the Cornell center’s initiative, leading a team that will collect VO2 max test and other data at t he t hree sites — including IC — to feed three investigations , two at Cornell and one at Weill Cornell Medicine in New York City.

ME/CFS appears to be only slightly discriminant regarding it s victims . S ufferers come from all region s of the world. Whites are diagnosed more than other ethnicities, but all are affected . Many with the disease are undiagnosed, especially among minorities. The average onset age is between 40 and 60 , but the disease can affect people at any age . There is a significant population of patients who became ill as children. More than two-thirds are women, but that imbalance could be caused by a greater reluctance among men to be tested. And while the disease was first identified in 1934, historical evidence suggest s it’s been around much longer than that.

Of course , the diagnosis also has its downside. W hile r ecovery has been documented in some who contracted the disease in pre-adolescence, no evidence exists of full recovery by those who were afflicted as adults. Some achieve a semblance of recovery , Keller said, by treating the symptoms, such as improv ing their sleep and learning to manage their energy in hopes of avoid ing the post-exertion malaise that can put them out of commission for days.

“I call it living circularly versus linearly,” Keller said. “Healthy people do tasks A , B , C , D and E , then go to bed. [ ME/CFS sufferers ] do task A , then recover, task B , then recover, and so on, making sure they have intermittent recover ie s so t hat t hey don’t exacerbate their symptoms. Knowing their threshold tolerance for exertion is important, and that’s part of what we learn through the exercise test.”

As for finding the cause, a lot has been learned about ME/CFS in recent years. The disease affects the autonomic nervous system — things such as blood pressure, gastrointestinal activity, sensory stimuli and the immune system . What throw s off the system is difficult to pin point, but e vidence exists for a number of possible physical contributors .

Many contract the disease after exposure to certain viruses, such as Epstein Barr virus, the cause of mononucleosis, or an other viral infection . The fact that not everyone w ho has those virus es comes down with ME/CFS suggests that genetic s play a role. And the significant immune system response, particularly in the disease’s early phase s , suggests that it, too, play s a role.

In the study, Keller and Geoffrey E. Moore , an Ithaca physician and adjunct graduate faculty member in IC’s Department of Exercise and Sport Sciences , are responsible for orchestrating three years of VO2 max testing at three locations . Moore’s role is to lead the screening of test subjects — 10 each year who meet the study’s diagnostic criteria for ME/CFS and 10 healthy control subjects. Keller oversees testing and management of the test data and samples collected at all three sites: a n infectious disease clinic in greater Los Angeles, the Weill Cornell M edicine in New York City and the Robert R. Colbert Sr. Wellness Clinic in IC’s Center for Health Sciences , where she also conducts the testing . Each year, 20 subjects will be tested at each site.

For each subject , blood and urine samples are taken before and after each exercise session , and vital sign s are measured during the workouts — including electrocardiogram , blood pressure, oxygen saturation and expired ventilatory gas readings , to determine peak oxygen consumption . At the New York City site, subjects also receive brain scans with an MRI (magnetic resonance imag ing ) equipment and a positron emission tomography ( PET ) scanner before and after each session.

Maureen Hanson, Cornell professor of molecular biology and genetics and principal investigator of the grant — who is also the leader of the Cornell-based ME/CF S collaborative research center — oversees a team that is investigating the role of extracellular vesicles . These structures carry proteins, lipids, hormones and ribonucleic acids ( RNAs ) that can influence cell function. Hanson’s team will examine this content before and after exercise to determine any role the vesicles might play in the disease , and also study a vast array of metabolic products.