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 that 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 Drug Administration.
But in Southern California, a group called the Workwell Foundation had been successfully verifying 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 have significant drop-offs.
For patients, these 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 friend had been out of touch for a while when in 2003 the friend approached Keller about conducting a VO2 max test. 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 exercise and sport sciences department’s VO2 max test equipment. “On day one, she tested like a low fitness 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 National Institutes of Health (NIH). The center at Cornell is one of three that the NIH established last fall; the other two are based at Columbia University and the Jackson Laboratory for Genomic Medicine in Farmington, Connecticut. A Data Management and Coordinating Center 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.
Together the 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 the three sites — including IC — to feed three investigations, two at Cornell and one at Weill Cornell Medicine in New York City.