Moving On Up

For years, the Pacific Fatigue Lab at the University of the Pacific has done the best research on exercise and ME/CFS. Staci Stevens, Dr. Chris Snell, and their collaborators perfected the use of two-day cardio-pulmonary exercise testing (CPET) in people with ME/CFS. Last week, Dr. Snell announced at the FDA meeting that the University had closed the Lab but that the work will continue at new locations.

Snell and colleagues have done more research documenting abnormal CPET results in ME/CFS than anyone else in the field. Beyond documenting abnormal results, the group has also proposed physical therapy regimens based on the metabolic dysfunction revealed in the tests. The Pacific group understands ME/CFS. They do not believe we can exercise our way out of the disease, but they do recommend staying as active as possible within limitations. Stevens was the first to recommend using a heart rate monitor for pacing, and her method is still one of the best out there. When I sought my own exercise testing, I relied on the protocol devised by this group.

So why would the Lab close when it has been such a successful pioneer in this area? Dr. Snell did not elaborate at the FDA meeting, but Stevens says the answer lies in patient services. The Lab has provided exercise testing and disability evaluation to ME/CFS patients for years. I personally know several people who succeeded in disability claims because of the assessments they received in the Lab. Stevens told me that University constraints would no longer allow the Lab to provide this essential service to patients. In order to continue the disability evaluation practice, the Lab had to leave the University.

Stevens created the Workwell Foundation fifteen years ago, and it was structurally meshed with the Fatigue Lab at the University. When the decision was made to close the Lab, Workwell became the backbone of the new effort. Disability evaluation and exercise testing will now be performed in two locations: the XCEL Physical Therapy Clinic in Ripon, California and Sierra Internal Medicine in Incline Village, Nevada (Dr. Dan Peterson’s clinic). Stevens says that the relocation actually enhances the quality of care that Workwell can provide patients. Working in Dr. Peterson’s office will not only offer patients access to his expertise in ME/CFS, but patients can receive IV saline to help them recover from the CPET. That’s an option I wish I had immediate access to last year. At the XCEL clinic, patients will have access to massage therapy to help with recovery, and there is the potential for rehab services in the future. Working with the XCEL Clinic also creates the opportunity for educating rehabilitation professionals, something that Stevens has been doing for years. Stevens says that leaving the University will improve the quality of Workwell’s services because “our new partnerships bring greater diversity, more experience, enhanced services and additional professionals to help with patient care.”

Beyond the disability evaluations, Stevens says that research will continue as well. To me, this is a critical priority. Stevens, Snell and the rest of the team have done excellent work in this area and it needs to continue. Research funding has been and remains a challenge, but Workwell is pursuing grants and other funding in order to continue this research. The research team remains intact. Snell, Dr. Todd Davenport, Dr. Mark Van Ness, and others from the University of the Pacific are staying involved in Workwell. Stevens has also added a Scientific Advisory Committee to Workwell’s structure. Separating from the University may create new challenges for Workwell in terms of grant and research administration, but Stevens says that the team is committed to continuing research in this important area. Several manuscripts are in progress, and members of the team continue to speak at conferences and meetings, including Snell’s presentation at the FDA last week.

Workwell’s goal is “to facilitate an understanding of the biological basis for fatigue and provide objectively determined therapeutic interventions that will improve quality of life” for people with ME/CFS. Fee-for-service exercise testing will provide the basis for disability evaluations, and will help fund more research. Workwell will also continue to educate researchers, health care providers, and policy makers about evaluating and treating people with ME/CFS. Stevens told me that, “We have the same personnel with the same services at nicer facilities.” This change is a new chapter for Stevens and her team, and new challenges will certainly arise, but the core team remains committed to helping people with ME/CFS.