Staci Stevens is not your typical researcher. For one thing, she’s had ME/CFS – a very well controlled case of ME/CFS, as she puts it, but ME/CFS nonetheless – for more than 20 years.
And secondly, she’s engaged in research that could have profound effects on how the disease is understood and defined.
Staci grew up absorbed in athletics. A three-sport athlete in high school, she went to the University of the Pacific on a basketball scholarship. ME/CFS put a big dent in her own athletic activities, but not in her fascination with athletic performance. Her undergraduate degree was in Sports Medicine and her graduate degree (MA) at the University of the Pacific was in exercise physiology.
At first glance, it would be hard to come up with a more disparate career focus for an ME/CFS researcher. The world of the exercise-challenged ME/CFS patient and the athlete seemingly couldn’t be at more odds.
But as a former athlete and now an exercise physiologist with ME/CFS, Staci would tie those two worlds together.
Her insight that the standard tools of exercise physiology might be used in a unique way to illuminate the performance deficits in ME/CFS is unmasking one of the central mysteries of the disease. And in doing so she has managed to both carve a niche for herself in an unlikely research field and excite the attention of her peers – a rarity in CFS research.
Throughout her academic career Staci Stevens has had her eyes on the prize – understanding ME/CFS.
• As a graduate student in exercise physiology, she enlisted her graduate advisors in work to take a first peek at ME/CFS.
• And upon graduating with an MA in exercise physiology in 1997, she formed the Workwell Foundation, a non-profit organization that would prove crucial in her efforts to direct funds to ME/CFS research and form strategic alliances with outside partners such as the CFIDS Association of America and the University of the Pacific.
• She cut her professional teeth on ME/CFS working as a clinical exercise physiologist developing innovative rehabilitation programs with Dr. Daniel Peterson of Sierra Internal Medicine.
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• From 2001 to 2006 she coordinated the exercise testing for the multi-center Ampligen ME/CFS drug trial.
• From 2004 to 2006 she worked with the CFIDS Association of America and the Centers for Disease Control to develop the curriculum for their health care provider treatment course.
• Recently she completed a study at DePaul University in Chicago, examining the effectiveness of anaerobic exercise in ME/CFS.
• Outside the ME/CFS field, she developed fire fighter fitness and wellness programs at the North Lake Tahoe Fire Department.
• As assistant Strength and Conditioning Coach at the University of the Pacific, she developed conditioning and fitness programs for Division I NCAA athletes.
• In 2007, now a faculty member of her alma mater, she and her former graduate advisor, Dr. Christopher R. Snell, along with Dr. J. Mark VanNess, established one of the first university-affiliated ME/CFS labs in the country, the Pacific Fatigue Lab at the University of the Pacific in Stockton, California.
In 2007 the Pacific Fatigue Lab team oversaw the exercise testing associated with the first ever placebo-controlled antiviral trial (of Valcyte) in ME/CFS at Stanford. It is the first facility in the country to provide ME/CFS patients with two-day comprehensive disability examinations.
With funding from the CFIDS Association of America, the Pacific Fatigue Lab initiated the first repeat exercise (“test-retest”) trials undertaken in ME/CFS. Their findings, which suggest ME/CFS patients have a unique inability to regenerate their energy stores after exercise, may have profound implications for many areas of the disease including research, diagnosis, the disease’s definition and treatment.
The potential of these trials was quickly perceived, and independent attempts to replicate them are underway in Canada and Europe.
Besides her educational and research activities, Staci Stevens has contributed heavily to patient education and advocacy; she speaks regularly at patient events, has penned articles for the CFIDS Association’s quarterly Chronicle, served a three-year stint on the federal advisory committee on CFS (CFSAC: 2003-06), and is currently an IACFS/ME Board Member.
With regard to the name ‘chronic fatigue syndrome’, Staci Stevens is clear that it makes her work to advance ME/CFS patients’ interests in the academic arena just that much harder. “There’s no question that the name is not taken seriously,” she says. “When I start my talks on ‘chronic fatigue syndrome’, everyone’s saying in the back of their minds, ‘I’m tired, too.’ Changing the name will help legitimize the illness and foster more compassionate care for patients.”
* Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS (http://www.phoenix-cfs.org) and publisher of the bi-monthly Phoenix Rising Newsletter.