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Reprinted with the kind permission of Cort Johnson and Health Rising
By Cort Johnson
Immunologists aren’t interested. Neurologists, in general, are to be avoided. Endocrinologists can’t be bothered. Except for primary care physicians specializing in chronic fatigue syndrome (ME/CFS), the outlook in the medical field for ME/CFS patients is pretty bleak. If a chronic fatigue syndrome (ME/CFS) patient doesn’t encounter hostility, they’ll most likely get a blank look at the doctor’s office and a prescription for an anti-depressant.
Todd Davenport, Staci Stevens and the exercise physiologists at Workwell (formerly Pacific Fatigue Lab) well know about the futility of getting University departments interested in ME/CFS. There is one bright spot in the otherwise rather dark academic universe, however. One specialty – physical therapy (PT) – is beginning to prove the surprising exception to the rule. Not only are the physical therapists (PT’s) Workwell is working with interested in chronic fatigue syndrome (ME/CFS), but they’re fully embracing the science behind it.
Why is physical therapy becoming the first medical specialty to “get” ME/CFS? Perhaps because PT’s are so hands on – they’re not caught up in some theoretical dialogue about their patients – they’re focused on the here and now and what they can do to make their patient’s lives better.
During a recent telephone conversation, Todd Davenport, the physical therapist associated with the Workwell Group, noted that the physical therapy field is actually VERY interested in chronic fatigue syndrome (ME/CFS)! He’s presented talks on ME/CFS to three symposiums attended by approximately 10,000 physical therapists.
This is the first of a series of blogs on the Workwell group, a small group of exercise physiologists in California whose exercise testing, disability evaluations, exercise prescriptions, and their ability to penetrate the PT field have made a profound difference in chronic fatigue syndrome (ME/CFS) over time.
The Physical Therapist and ME/CFS
“I am a physical therapist and movement is my medicine.” Todd Davenport
The story started in the spring of 2008 when the chair of the physical therapy department at the University of the Pacific, a private university in Stockton, California, was cruising the UOP’s website when he came on something called “The Pacific Fatigue Lab”.
Davenport, who apparently loves to collect titles, (he’s a physical therapist (PT), Doctor of Physical Therapy (DPT), has a Master’s in Public Health (MPH) and is a certified Orthopedic Clinical Specialist (OCS)) was intrigued by the fatigue part. Davenport’s Master’s thesis was on inflammatory muscle disease (IMD) – a fatigue and muscle weakness disorder. While ME/CFS and IMD are different, during a telephone conversation, Davenport noted that the approach to them is similar.
A physical therapists first goal in inflammatory muscle disease is to eliminate, using rest and pharmacological drugs, any flares a patient is experiencing. Once the flare is over, the PT tries to expand the person’s functionality without overloading their system. Their protocols are symptom limited: if the exercise produces a symptom flare, the physical therapist reduces it.
That’s remarkably similar to the way Staci Stevens, an exercise physiologist who has chronic fatigue syndrome (ME/CFS) and uses exercise testing to prove disability in ME/CFS, approaches the disease with her clients. The only real difference between her approach to ME/CFS and Davenport’s approach to inflammatory muscle disease (IMD) is that IMD has pharmacological drugs PT’s can use to reduce flares, and ME/CFS does not.
After hitting her head against the wall so many times with different academicians, Staci Stevens said she was shocked to come across a physical therapist whose management approach was almost identical to hers. Davenport, however, was simply following a basic tenet of physical therapy: never impose an physical load on a system that can’t handle it. He believes the best results come from listening closely to the patient:
“The best practice with this patient population, as with all patients we see as PTs, comes back to good, old-fashioned listening—taking on good faith what the patient has to say, and going on from there.” Davenport
Davenport is also listening closely to the science. If the research indicates the aerobic energy production system is broken in chronic fatigue syndrome (ME/CFS), far be it for him to assume otherwise. Davenport has lead the way in helping the PT community understand this puzzling disease.
In their landmark 2010 physical therapy paper, “Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”, Davenport and the Workwell Group (Stevens, VanNess, Snell and Little) concluded that “The metabolic impairments observed in people with CFS/ ME suggest the need to limit the intensity of activity to avoid excessive use of the aerobic energy system”. They asserted that heart-rate biofeedback could be effectively used to identify activities which did not produce harm and recommended that exercises in general last less than two minutes in order to avoid overstressing an overburdened energy production system.
Do No Harm
When seeing an ME/CFS patient, Davenport typically begins with mild stretching to increase the patient’s range of motion, and interestingly enough, increase their energy availability. It turns out that the impaired range of motion commonly found in ME/CFS results in reduced “mechanical efficiency”; i.e. increased energy is needed to move one’s limbs. When you’re as energy-depleted as ME/CFS patients are, that reduced range of motion could obviously constitute a rather significant energy drain. Plus, because that joint and muscle friction causes pain, which activates the sympathetic nervous system, reducing pain can help quiet that system down as well.
Davenport combines stretching exercises with deep diaphragmatic breathing exercises in order to increase oxygenation and energy availability. When the patient system has rehabilitated a little bit, he adds very short-term, low-load, strengthening exercises.
Pacing is another essential part of Davenport’s approach. A “push-crash” pattern in which people reach peak levels of activity only to fall into a crash is common. Loping off those activity peaks and filling in those crash-induced valleys by pacing is essential to removing stress on the system and allowing it to rehabilitate to the extent that it can.
Davenport has no illusions about how difficult pacing can be. Coming to grips with what you can really do physiologically is not easy. One of the greatest difficulties Staci Stevens has with many of her disability clients is convincing them how little activity the exercise tests indicate they should be doing.
(The very severely ill, unfortunately, rarely make it to his and other physical therapists’ offices, but Davenport holds out hope for teleconferencing visits at some point. The problem with that venue is getting health insurers to pay for it.)
When a Physical Therapist Gets ME/CFS
Nicole Rabanal didn’t need to learn about ME/CFS to understand how to pace herself. A physical therapist who stated she woke up one day “feeling, out of the blue, like I’d been hit by a truck”, Rabanal had an array of ME/CFS symptoms (severe flu-like symptoms, eye pain, headache, ‘heavy’ head, muscle weakness, random numbness and tingling, difficulty breathing and swallowing.”) As most patients have, Rabanal did the specialist circuit – seeing 17 of them – before finally realizing she had ME/CFS.
Rabanal now employs her physical therapy protocols on herself. Making sure not to overload her body, she works a two-hour shift in the morning, then lies down, taking oxygen with ice on her head for 4 hours, then works for two more hours. She goes to bed no later than 8pm, and does nothing on the weekends. She can’t stand unsupported for more than five minutes, and has to limit her socializing because of the energy drain. She uses a Fitbit to monitor her heart rate.
In a feature article, “The Real Story About Chronic Fatigue Syndrome”, on PT in motion, Rabanal, who is associated with Dr. Bateman at the Bateman-Horne Center, in Salt Lake City, talked about how important her physical therapy training had been to managing her ME/CFS.
“The knowledge and experience of having been a PT for nearly 25 years has been incredibly helpful to my personal treatment plan. Listening for and understanding the signs of when I’m pushing beyond my energy limitations, then implementing appropriate exercise and stretching, is a big part of the management puzzle. This of course is what PTs do every day with patients, in one form or another—we listen closely and apply our knowledge to their presentation and what we learn from them.” Rabanal
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Rational for Workwell’s and Davenport’s Two Minute Exercise Protocol: Three types of energy are present to our muscles. The Light Blue-line represents short-term energy stores in our muscles which lasts for about two minutes and produces no harmful effects. The Red Line – represents anaerobic energy production which after a few minutes produces symptoms. The Dark Blue Line represents a broken aerobic energy production system which quickly poops out causing symptoms. Davenport and Workwell use the two minutes of energy storage (light blue line) as the basis for the duration of their exercise/activity regimens in ME/CFS
Davenport asserted that because most ME/CFS patients PT’s come across have not been diagnosed with chronic fatigue syndrome (ME/CFS), PT’s must be on the alert for the typical signs of ME/CFS such as post-exertional malaise, and fatigue that does not significantly improve with rest. PT’s, he warned, have to be flexible. They are hardwired to have their patients exercise and usually that works. But when it doesn’t, instead of labeling them “non-compliant”, they should consider they may be dealing with a person with ME/CFS.
“Pushing graded exercise and telling patients that they just need to get up and get moving”, Davenport says, is a mistake. Over time, he very slowly builds on those anaerobic exercises – not to fix the aerobic system (it’s broken after all) – but to strengthen anaerobic functioning.
Rabana agrees and warned that unless PT’s know the diagnostic criteria for ME/CFS, they run the risk of harming their patients.
“Because if we aren’t correctly identifying this patient population, it’s easy to push patients into a treatment or exercise program that will make their condition worse. They are likelier to be noncompliant, disinclined to follow up with care, and present as a returning patient whose condition never seems to improve.” Rabana
That doesn’t mean that exercise can’t help. Quite the contrary – it can be very helpful when done correctly – and Davenport and the Workwell Group have a case report to prove that.
A Science-Based Approach to Exercise in ME/CFS: A Case Study
A case report published in a 2010 IACFS/ME Bulletin demonstrated in dramatic fashion how helpful a science-based approach to exercise can be in ME/CFS. It involved a 28 year old ME/CFS patient who was concerned with her increasing inability to engage in anything but the most rudimentary activities. Employing a push-crash approach, she would get things done when she felt better but then would be beset by whole body fatigue and pain. With her “good” periods rapidly disappearing, she feared for her ability to do even minimal activities.
Her oxygen consumption on a single exercise test was in the low normal range, but other measures (peak exercise systolic blood pressure (112/72), respiratory rate (38 breaths/min), and ventilation (73 L/min) were out of range. Blood pressure maintenance was clearly a problem, as it dropped upon standing and failed to reach resting levels during exercise. (It should go up during exercise. It should be noted that people with ME/CFS display a wide variety of abnormalities on exercise – some have low oxygen consumption; others exhibit problems with ventilation, or heart rate or blood pressure, etc. The common denominator seems to be some sort of cardiovascular problem that shows up during exercise. Look forward to an upcoming paper by Dr. Betsy Keller on that.)
Like many people with ME/CFS, the patient felt fine during the exercise; in fact, she reported that she felt “great and energetic” for about six hours – and but then she declined and felt worse the second and third days.
For the next year, she followed Staci Stevens’ activity and exercise program religiously. Using a heart rate monitor to ensure that she operated in her anaerobic “safe-zone”, she paced, did diaphragmatic breathing, upper body flexibility stretches, and resistance and short-term endurance exercises three times a week. When her heart rate monitor indicated she was out of her safe zone, she sat or lay down. She kept an exercise log throughout.
A follow-up a year later indicated that not only had she stopped her activity regression, but she had been able to increase her activity levels without causing ill effects. Despite the fact that she had been only engaging in anaerobic activity, her CPET tests revealed significant improvements in virtually every category ((Peak VO2 (26.1 ml/kg/min), ventilation (90 L/min), respiratory rate (54 breaths/min), heart rate (189 beats/min), and systolic blood pressure (170/98)).
This person still has a mysterious problem with aerobic functioning. She’s not out at the gym pumping weights or running or anything close to that. Her aerobic energy-producing system is still busted, but she is much more functional and she feels much better and her test results reflected that. In the case report, Stevens and Davenport proposed that their protocol had increased this patient’s ability to engage in submaximal exercise. In layman’s terms, that means she’s able to do the household chores and other activities she was unable to do before without relapsing.
Seven years ago, Stevens and Davenport ended their case report stating that further study was needed.
“These observations regarding potential improvements in cardiovascular and pulmonary system impairments require additional replication in the context of controlled intervention studies.”
Seven years later, at least three large CBT/graded exercise studies costing millions of dollars (PACE, FIT, GETSET) have been published which had minimal at best results. Despite the fact that each was purportedly designed to increase fitness and activity levels, none employed physiological testing or even measured activity levels.
Meanwhile, the Stevens/Davenport case study – which showed actual physiological improvements using a heart-rate based activity approach – has languished in an IACFS/ME Bulletin. Staci Stevens said she would love to do a clinical trial, but Davenport noted there is little funding for rehab studies in general.
GETSET (Don’t Go)
In “Another ‘False Start’ in ME/CFS“, Davenport assessed the most recent of those trials, the GETSET trial, published in, where else, Lancet, which managed to embarrass itself again with yet another poor ME/CFS study. Calling GETSET PACE-Lite, Davenport noted that post-exertional malaise was not required to enter the trial, and only 42% of the participants completed the trial. While the results were statistically significant, the outcomes were not clinically significant (Davenport called them “decimal-dust”) and probably made little if any real difference in the participants’ lives. If you appreciate good writing and want to learn how not to do an activity trial, check out Davenport’s piece on Workwell’s website here
Spreading the Word
Workwell and Davenport want to spread the word on ME/CFS. Their data on the aerobic energy production problems and the exercise restrictions it causes has the potential to rock conference goers’ worlds. What they don’t have is the minimal funding needed to present their data at conferences. This is what happens when you’re on the wrong side of government funding. The UK and the Netherlands have poured millions of dollars into CBT/GET trials; the U.S. hasn’t spent a dime on studying the kind of rehabilitation Workwell and Davenport are proposing.
That means Workwell has to work off its own dime. With admission and submission fees (yes, it costs to present something in a conference), travel and hotel, costs typically run from $1600-$1800 per person to present something at a conference. That means a lot less outreach than we’d like from this group.
Physical therapy isn’t a panacea for ME/CFS and PT’s don’t present it as such. ME/CFS will still be there after the physical therapy is done, but it can relieve their pain and increase their functionality. One PT in “The Real Chronic Fatigue Syndrome” article celebrated a former kayaker’s success of paddling her first tenth of a mile after ten years of no kayaking at all. Another ME/CFS patient who could only walk 50 feet, “if that”, was able to walk for ten minutes. For those in pain, it’s possible to lower pain levels from a 6 or a 7 to a 3 or a 4. That’s a major reduction in pain. Being able to walk ten minutes is piddling stuff for a healthy person, but a major improvement for many people with ME/CFS.
About the Author:
Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, 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