Reprinted with the kind permission of Cort Johnson and Health Rising
You don’t need to be a large organization to make a big difference. You simply need to be committed to a field (and producing jaw-dropping results doesn’t hurt either). Consisting of three exercise physiologists (one with ME/CFS), a clinical coordinator, and working with one of the top chronic fatigue syndrome (ME/CFS) experts (Dr. Dan Peterson) in the world, the small Workwell Foundation has and is playing a seminal role in the chronic fatigue syndrome (ME/CFS) field.
The recent metabolomic and energy studies – that have galvanized so much interest by highlighting problems with energy production – are simply the logical conclusion of the exercise test results Workwell pioneered with Dr. Dan Peterson over 15 years ago. Workwell’s exercise tests uncovered an energy deficit that may be unique to ME/CFS and helped make exercise a key component in dozens of ME/CFS research studies. The Workwell Foundation’s work with Dr. Todd Davenport resulted in a seminal paper on ME/CFS and physical therapy which has helped many physical therapists embrace ME/CFS.
For many though, Workwell’s influence has come at a much more individual level: their exercise tests have assisted many people with ME/CFS and/or fibromyalgia (FM) in winning their disability battles and getting crucial financial support.
The second part in Health Rising’s series on The Workwell Foundation focuses on one of the most agonizing yet impactful battles many people with ME/CFS/FM – winning their disability claim.
The Disability Battle
So you’ve got a bad case of chronic fatigue syndrome (ME/CFS) and/or fibromyalgia. You’re so sick that you can’t work anymore. Thankfully we don’t live in medieval times. We have systems designed to protect the ill among us – systems that will at least ensure that we’re not starving out on the streets simply because we were unlucky enough to fall ill. Right?
Not so fast. The purveyors of those systems, whether they be the federal government or private insurers, aren’t going to take your word for your inability to function – they want you to prove it. In fact, the private insurers will take and twist any scrap of evidence they can find in an attempt to prevent you from proving it. They’ll bring in their hatchet men (doctors), they’ll surveil you, and they’ll deny you and just hope you go away.
Plus, you of all people have a particular problem. You have a controversial disease that doesn’t have the kind of medical validation that other diseases do. Proving that you’re too functionally limited to work isn’t easy. It’s basically your word (and you hope) your doctor’s word, plus whatever test results you can muster up against a hostile insurance company and a judge that may view your case with some skepticism. You can throw most of your expensive test results (pathogen screens, cytokine, NK cell, cortisol tests, etc.) in ME/CFS right out the window – none of them prove you can’t work.
You hope that your doctor writes a good report, and that you crossed your T’s and dotted your I’s, and you pray you get a good judge. It’s kind of a crap shoot – one with potentially immense consequences.
Workwell’s Two-Day Exercise (CPET) Test
As a cornerstone symptom of CFS, it is imperative to document post-exertional malaise in order to objectively demonstrate the inability to work on a regular and continuing basis. Workwell
There is a way out though. The legal system accepts a couple of functionality tests that people with ME/CFS can use. Neuropsychological testing can provide evidence of cognitive problems, but on the top of list is Workwell’s two-day cardiopulmonary exercise test (CPET). Workwell pioneered the use of the 2-day CPET in ME/CFS/FM and has been using it for over a decade to validate ME/CFS/FM patients’ experiences and prove their degree of disability.
The two-day CPET test provides a true test of functionality that the courts almost always accept. Steve Krafchik, an ME/CFS/FM disability attorney in Seattle says he’s never lost an ME/CFS/FM case featuring a positive Workwell CPET. Before we get to the exercise test that can help you win your disability, though, we have to go over the exercise tests that can do the opposite.
Exercise Tests That Hurt
Other exercise tests (one-day exercise tests, submaximal exercise tests, treadmills, step tests) will probably not only not reveal the energy problems present in ME/CFS, but can sound a death knell for an ME/CFS/FM patient’s attempt to get disability.
One ME/CFS patient with documented pain and fatigue problems failed to receive disability when she passed two other kinds of exercise tests – a one-day exercise test and an 8-minute treadmill test. (Yes, the court agreed that walking 8-minutes on a treadmill indicated that this person demonstrated “normal functioning” and could return to work.)
In another near tragic case, an ME/CFS patient’s primary care doctor and three other MDs (including one from the Social Security Administration, a private insurance carrier, and a state retirement board) agreed that she was disabled, yet the court, using the findings from a treadmill test and a medical advisor who had never seen the patient, rejected her claim to disability. (She ultimately won on appeal).
Disability was rejected in another ME/CFS court case because the submaximal one-day exercise test results – which did indicate a detriment – weren’t strong enough to counter the video surveillance of the ME/CFS patient driving his car, shopping, etc.
Anyone required to do these tests by an insurance company is likely in desperate need of getting a true test of functioning done – an exercise test that can help instead of hurt – to counteract those findings.
The Exercise Test That Helps
Each of these ME/CFS patients failed to get disability because the courts confused a single exercise test with a true test of functionality, but a single exercise test simply determines whether a person can function normally one time.
Many people with ME/CFS/FM can “show up” one time; it’s the second, third and fourth times where the real problem – the post-exertional malaise – kicks in. Workwell’s 2-day exercise test is the only test which shows that exertion impairs an ME/CFS/FM patient’s functioning and provides objective medical evidence to do so. It’s Workwell’s ability to medically document this that makes their reports so effective. Their two-day maximal exercise test is able to demonstrate that ME/CFS/FM patients can’t be expected to engage in even sedentary work on a regular basis.
Submaximal exercise tests don’t work because they require that a submaximal effort be put forth, which allows insurance companies to suggest the low scores are a result of malingering – planting doubt in a disability judge’s head. Because Workwell does a maximal exercise test, insurance companies can’t use this ploy.
The fact that the submaximal exercise test they do is actually a pretty puny test only works in Workwell’s favor. It doesn’t take a brain scientist to understand the gravity of what Workwell’s tests are showing. Most of the ten minutes or so spent in the exercise test are spent in a low ramp-up period which requires mild exertion. Only during the last couple of minutes does the exercise really ramp up. If your system can’t recover from that little bit of stress by the next day, it’s really impaired.
Those few minutes, though, are apparently enough to take a two-by-four to many ME/CFS/FM patients’ ability to produce energy. One early ME/CFS study found almost a 25% drop in energy production – a remarkable decline in the ability to produce exercise – after spending a mere 10 minutes or so on a bicycle.
A second, larger study found a huge drop in something called “work efficiency.” That suggested that ME/CFS patients were spending a lot of oxygen and not getting a lot of energy out of it.
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The CPET Test
Workwell gets a bevy of data from its exercise tests but two key factors, VO2 max and the anaerobic threshold, hold the key to their disability reports. VO2 max measures an individual’s peak aerobic capacity – how much energy their system can generate when it’s going at full bore. Anaerobic threshold measures the point at which a person transitions from generating energy cleanly and efficiently (aerobic energy production) to where they’re relying on the much less efficient (and toxic) anaerobic production of energy.
The dark blue line curving up to the right refers to healthy people.
The red line shows what happens to many people with ME/CFS/FM
as they exhaust their aerobic capacity.
The two main facts to get are that: a) the aerobic metabolism burns O2 and produces lots of clean energy, while b) the anaerobic energy production burns glucose (glycolysis), emits lactic acid, produces little energy, and makes you feel like crap. Both systems are going almost all the time, but if you’re going to do something like exercise, or even being active, your aerobic system has to be functioning well. If it isn’t, you’ll quite quickly get fatigued and be in pain. That’s the situation that Workwell often finds in chronic fatigue syndrome (ME/CFS).
Healthy people respond to exercise by producing voluminous amounts of clean energy, but with their aerobic energy production system crippled, people with ME/CFS/FM fall back on their anaerobic energy production system.
Now, lactic acid and hydrogen ions build up, producing fatigue, muscle burning sensations and pain. The body combats that buildup by generating C02, which is exhaled through the lungs. It’s this increasing emission of CO2 which signals to Workwell that a person’s anaerobic threshold has been reached. When that happens, energy production slows to a crawl and every bit of energy produced is going to come at a cost.
It’s the anaerobic threshold that is the measure which really cements disability for many ME/CFS and FM patients. An early anaerobic threshold simply means your ability to produce energy is severely limited. A significantly reduced VO2 max/anaerobic threshold on the second day means you can’t generate the energy to work – which can even include sitting up – consistently.
The Disability Report
I had the opportunity to read one of Workwell’s CPET reports. It was a 12-page document full of statistics, charts and analysis.
In their summary, Workwell demolished any attempts to show that this person was simply deconditioned. Then, they turned to the crucial factor of functioning. Because the ability to function in a sedentary job precludes a person from getting disability, Workwell needed to show that this person was unable to do that — and they did. They noted that:
“Most activities of daily living (reading, normal speed walking, computer use, office-type work) are aerobic in nature and healthy individuals are able to perform such activities for prolonged periods of time with no meaningful physical fatigue.”
But this patient X’s test scores indicated:
“That even light work will demand more energy than can be aerobically produced. Many normal activities of daily living would severely tax “patient X’s” capacity to produce energy aerobically… These results … preclude “patient X” from engaging in light or sedentary work in a consistent and reliable manner.”
Workwell’s been filing disability reports like this for over a decade. Recently, their exercise testing reached a new level of significance as it figured prominently in a federal disability case recently won by an ME/CFS patient.
The Brian Vastag Case
Brian Vastag was recently put through a disability torture session by Prudential Life Insurance. After Prudential dropped his short-term disability benefits, it then denied his attempt to get long-term help. After losing several appeals, Vastag went nuclear and filed a federal lawsuit against Prudential, citing the Employee Retirement Income Security Act of 1974.
The case report is instructive in the lengths to which an insurance company will go to deny a disability claim. Remarkably, Prudential used a nurse practitioner’s interpretation of Vastag’s medical data to reject Susan Levine MD’s assertion that Vastag was unable to work.
Next, a rheumatologist argued that Vastag’s findings of active herpes virus infections were borderline abnormal and did not explain his fatigue or cognitive decline. The rheumatologist concluded that Vastag was not disabled because he had not demonstrated “objective evidence of total disability.”
With that, Vastag visited Workwell to get an exercise test, the Zinns to get a brain scan, and Sheila Bastien, PhD, for a neuropsychological exam.
Workwell determined that the poor functioning Vastag displayed during the 2-day exercise test “severely limits his ability to engage in normal activities of daily living and precludes full-time work of even a sedentary/stationary nature.”
Even with that, Prudential denied Vastag’s subsequent appeal. While the occupational specialist agreed that the CPET testing did indicate abnormal fatigue, Prudential denied its validity because the CPET findings were not diagnostic for CFS – the condition Vastag was applying for disability under.
Vastag replied by filing a federal lawsuit against Prudential in May 2015. In the 32-page ruling released on May 18th of this year, the judge relied heavily on the Workwell report and the “gold standard” CPET test it used for “measuring functional capacity” and the “objective medical evidence” it provided, which demonstrated Vastag’s impairment.
The judge called Prudential’s conclusion that Vastag failed to demonstrate “any impairment” in his functionality “perplexing,” particularly in light of the physical abnormalities she reported that Workwell’s CPET testing “dramatically” demonstrated. She singled out the exercise testing for providing “objective evidence of the limitations of Vastag’s functional capacity.” The judge also dismissed claims by Prudential that because CPET exercise testing was not diagnostic for ME/CFS, it should not figure in his claim.
Laying down a judgment – which hopefully lawyers will use in decades to come – the judge further castigated the Prudential lawyers for missing the key symptom Workwell’s test is designed to document – post-exertional malaise.
With that, Judge Katharine S. Hayden of the U.S. District Court of New Jersey ordered Prudential to remand all benefits to Brian Vastag.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.