Working Well For ME/CFS (Still) – ‘Pacific Fatigue Lab’ (Workwell) Continues On After University Cuts Them Loose
By Cort Johnson
WORKING WELL FOR ME/CFS
Our 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 this population. Staci Stevens, Program Director for Workwell
The’ Pacific Fatigue Lab’ – now the Workwell Foundation – has left one home (the University of Stockton) and built two others. Workwell has a remarkable legacy in history of chronic fatigue syndrome. Staci Stevens, an exercise physiologist with ME/CFS, started the ball off rolling when she, working with Dr. Peterson, figured out to document the mysterious post-exertional fatigue found in ME/CFS.
The Stevens Protocol Is Born
She knew that people with chronic fatigue syndrome could often make it through the first or second day of work but then would fade badly. The problem was documenting the fade, and she came up with a devilishly simple and effective way to do that.
The problem was that if people with ME/CFS rest beforehand they can often get through the first test of anything pretty well. Since the “I’ll just take a day or two off option to rest up” isn’t very popular in the work world, and documenting reduced functionality is what Workwell is all about, resting was exactly what Staci didn’t allow ME/CFS patients to do.
If they didn’t fall apart during the exercise test the first time she would simply bring them back – exhausted, bleary eyed, muscles screaming from lactic acid build up - for another try at the rack…er bicycle, all the time tracking their ability to produce energy.
You cannot fake an anaerobic threshold. Steven P. Krafchick, MPH, JD, Krafchick Law Firm, Seattle, Washington
So emerged the ‘Stevens Protocol’ – the only test that actually documents post-exertional fatigue, and documents it so well that failing the test is virtually a slam-dunk for a disability evaluation.
If fatigue is defined as “reduced efficiency at producing work (energy)”, the ME/CFS community exhibited reduced efficiency in spades; on either the first or the second test many people with ME/CFS are simply not able to produce normal amounts of energy.
That second day fade wasn’t just interesting, it was virtually unheard of in the medical world. People with heart disease, kidney failure, etc. can all generate the same amount of energy on a second exercise test but many people with ME/CFS cannot. This is so different – such a head shaker to the medical community – that it’s probably yet another example of people with ME/CFS being too different for their own good. With specialists focused on either the cardio or pulmonary fields – not the cardiopulmonary work Workwell is doing – it’s been difficult to find the right journals to publish in.
As the protocol been documented in other studies, though, word has gotten around and using exercise tests to stress ME/CFS patients systems has become common in research studies and at doctors’ offices. The exercise cycles at Dr. Peterson’s, Dr. Lapp’s, Dr. Klimas’, Dr. Enlander’s and others’ offices are a testament to their work. In fact, Workwell Foundation is probably mostly responsible for the widespread recognition that inducing stress is critical to uncovering abnormalities in all sorts of systems in ME/CFS.
The Stevens Protocol to objectively document the key symptom in ME/CFS – PEM – is why Dr. Snell’s talk at the FDA Stakeholder’s Meeting may have been the key presentation of the entire meeting.
Unfortunately the University of the Pacific just didn’t get it (anymore) and they abruptly shut down the program recently. Maybe being the leader in a controversial field just got to be too much for them. But we must remember that the University did allow Drs. Snell and Van Ness and Staci Stevens and others to do fundamentally important and unique work on this very controversial disease for years.
I talked to Staci Stevens, Workwell’s Program Director, about the closure. She said they were surprised but that there’s nothing to do about it now. There’s no reason to contact the University about what happened and, in fact, there’s good reason not to since members of the Workwell Foundation still work there.
Workwell’s research projects were impacted by the University’s decision, and they had to scramble but they’re up and running in two locations and there are some silver linings; Workwell is no longer hindered by University regulations which kept the lab from fundraising and they’re also now housed in two much, much nicer facilities ( XCEL Physical Therapy, Ripon, CA) and one – at Dr. Peterson’s clinic (Sierra Internal Medicine) in Incline Village, couldn’t be closer to the action.
If you asked me who lost more? A University on the cutting-edge of research into one of the most perplexing problems of our time or Workwell? I’d say the University. Dr. Kogelnik left Stanford precisely because he felt he could do more outside of the University and hopefully Workwell will do the same. They sure landed on their feet. Sometimes a change of venue can do wonders (:)). Hopefully the move will turn out to be a blessing.
Disability Evaluations Ongoing
“I refer my clients to Workwell Foundation for physical capacity testing because they use the state of the art testing blessed by the American College of Sports Medicine, American Heart Association and American College of Chest Physicians, among others. The testing is a good objective measure of limitations in the ability to work. You cannot fake an anaerobic threshold or oxygen use readings.” Steven P. Krafchick, MPH, JD, Krafchick Law Firm, Seattle, Washington
The entire team stayed the course, the professors/researchers are still with Workwell – a testament to their commitment (and fascination) with this disorder. Importantly, Workwell’s disability program is completely intact; they are doing the same disability evaluations they did while they were at the Pacific Fatigue Lab (and now you have two locations to choose from).
I asked Staci Stevens if she felt their work documenting an objective metabolic dysfunction in this disorder had been validated? It was clear she felt that it had…but how much more validation the research community needed was really up to them. Give her a 500-person study and she felt she’d be able to objectively define the subsets in ME/CFS; no questionnaires needed – just get on the bike and ride.
A Distinct Focus
Our mission is to focus on research concerning the functional aspects of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Our 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 this population.
One of the great things about Workwell is that the Foundation is committed to working on this disorder and this disorder along; no other disorders need apply.
Dr. Snell will be talking on “Cardiopulmonary Testing for the Assessment of Fatigue” in Irvine, CA on May 11th.
Staci Stevens Talks with Llewelyn King
Workwell’s Press Release
Workwell Foundation Press Release/Open Letter to the CFS/ME Community
Workwell Foundation, a United Charitable Program, announces opening its cardiopulmonary exercise testing services at two new locations. Workwell specializes in the evaluation of disability impairment for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), Fibromyalgia Syndrome (FMS) and other fatiguing conditions. Staci Stevens, Christopher Snell and their Workwell colleagues formally operated the Pacific Fatigue Laboratory (PFL) which is now closed. They will continue to build on the PFL’s reputation for clinical services, education, research and consulting with the same personnel.
Workwell Foundation’s mission is to focus on research concerning the functional aspects of CFS/ME. The goal is to facilitate an understanding of the biological basis for fatigue and provide objectively determined therapeutic interventions to improve quality of life for this population. Workwell’s unique contribution is helping patients and their families understand this illness as well as educating health and fitness professionals about CFS/ME.
Workwell Foundation takes over where the Pacific Fatigue Laboratory left off. We are now located at XCEL Physical Therapy, Ripon, CA, and with world renowned CFS/ME specialist Daniel Peterson, MD of Sierra Internal Medicine, Incline Village, NV. Services offered include disability evaluations, provider education and cardiopulmonary exercise testing for clinical and research purposes. Workwell staff members are also available for speaking engagements and bio scientific consulting.
For more information and the latest news about Workwell Foundation please visit:www.workwellfoundation.org.