In Part 1 of my post Exercising & ME/CFS – The “E” Word, I wrote about how I have struggled with incoporating exercise into my own life over the years with ME/CFS, the prejudice we receive as ME/CFS patients from society and physicians who believe that if we would just “do it” we would feel better, and so on.
Jennifer Spotila, J.D., a member of the CFIDS’s Association Board of Directors, wrote a great article on exercising with ME/CFS called The “E” Word I wanted to continue in Part 2 focusing on the remainder of Jennifer’s article. At the end of Part 1, I left off where Jennifer was about to explain about how exercise could be adapted into a ME/CFS patient’s individual situation – “intelligently and compassionately adapted”. So here is where we left off – at what Jennifer calls the “Dual Energy Systems”. I want to make sure I quote all of this section because I don’t want to miss anything important or misinterpret anything in trying to sum it up in my own words.
In order to understand this conceptual model, one must first understand the body’s energy systems. Dr. Christopher Snell likens the human body to a hybrid car. A hybrid car has an electric motor (the anaerobic energy system), and a gas engine (the aerobic energy system) powered by gasoline (oxygen). The car’s electric motor operates until it is out of energy, and then the gas motor takes over to provide energy and recharge the electric motor. But Snell says that in CFS, “The gas engine doesn’t work efficiently and can’t recharge the electric motor. The patient quickly exhausts the energy available in the electric motor, and then must wait a long time for that energy to be replenished.”
Anaerobic energy is depleted after two minutes of activity, while the aerobic system is simultaneously ramping up to take over energy production. The point at which the body can no longer generate enough energy using oxygen is called the Anaerobic Threshold (AT). Every person then requires rest in order to repay the oxygen debt they have incurred. Exercise physiologist Staci Stevens offers a three-part example. An athlete can climb two flights of stairs without fatigue or shortness of breath. A sedentary overweight person might climb the same two flights of stairs and feel out of breath, but will recover completely after a brief rest. A person with CFS may struggle to climb the stairs, and experience severe fatigue and PEM. In other words, the CFS patient reaches the AT after much less exertion than a healthy person, and requires a longer period of time to recover.
The exact mechanisms for why this happens in CFS patients are not known, but Dr. Snell points out that this lower AT is likely the result of malfunctions in the patients’ aerobic energy system. Patients can work around this problem in two ways. First, patients can keep their heart rates under the level that corresponds to their ATs to avoid taxing the dysfunctional aerobic system. Second, patients can take advantage of the anaerobic energy system by limiting exercise to two-minute intervals, alternated with rest. These strategies can condition the anaerobic energy system to improve its function, while also minimizing reliance on the aerobic energy system. Snell, Stevens and Davenport use exercise testing to calculate an individual’s AT, but patients can estimate their own AT with a simple calculation or with some careful experimentation.
The important thing is to start low and go slow. Stevens recommends that patients begin with detailed observation and of heart rate and activity. He recommends wearing a heart monitor and noting the heart rate throughout the day on a frequent basis. Everything we do affects our heart rate from lying down, to cooking dinner, to climbing the stairs. He says that patients should also pay close attention to how different activities feel.
Stevens suggests using the Borg scale to measure an individual’s Rating of Perceived Exertion (RPE). Using this scale, an individual assigns a number between 6 and 20 to the overall level of perceived exertion during an activity. By observing heart rate and RPE, patients can begin to establish correlations and identify AT limits. For example, cooking a meal could raise a patient’s heart rate to 110 beats per minute and feel very hard (17 on the scale). For such a patient, that heart rate (110 bpm) might be over his/her AT.
The Pacific Fatigue Lab model uses heart rate biofeedback to help CFS patients stay within a safe zone: activity must be under the AT and must be followed by sufficient rest. The patient’s heart rate monitor is set with an alarm for 10 percent below the AT. When a patient’s heart rate reaches that number, the monitor alarm sounds and the patient should immediately sit down and rest. The alarm is an objective measure of how hard the CFS body is working, and helps patients recognize when they are exceeding their limitations.
Safe Exercise for ME/CFS Patients
How might this translate into safe exercise? According to Stevens, ME/CFS patients have to abandon the definition of exercise they had when they were healthy. Every exercise needs to be treated like exertion and must stay within the safe zone under the AT.
“Exercise interventions for people with CFS/ME must be carefully customized to reflect the unique needs of each individual.”
Stretching and range of motion exercises can be introduced first, as long as the patient’s heart rate stays within the safe zone under the AT. Once a patient is able to tolerate these exercises well, they may experiment with short duration (less than 2 minutes) low intensity interval training – with the heart rate staying below the AT. Each interval must be followed by adequate rest. Any activity that causes an increase in symptoms lasting more than a few hours is too rigorous, and should be reduced or eliminated.
Patients all along the continuum of illness severity may be able to benefit from this method. A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patient’s limbs slowly and carefully to gently stretch muscles and try to improve flexibility. Care must also be taken to avoid aggravating any symptoms of orthostatic intolerance, a condition common in people with CFS.
Caution is essential when experimenting with any increase in activity. Stevens emphasizes that “the body is right,” and that when an activity feels too hard then the individual should stop and rest, no matter what the heart rate monitor says. Patients should not exceed RPE of 13 to 15, corresponding to the exertion feeling “somewhat hard.” Remember that a person with CFS cannot replenish energy using oxygen in the same way as a healthy person. Pain might equal gain for healthy people, but this is not the case for CFS. Slow but steady is the best way for a CFS patient, where every activity is done at the pace and duration likely to prevent symptom exacerbation.
It is so important that ME/CFS patients DO NOT tax their aerobic energy systems and incorporate the proper amount of rest periods into any activity. The Pacific Fatigue Lab model’s combination of methods, which consist of heart rate monitoring, RPE scale, short-duration activity, followed by the proper amount of rest, can help ensure “that physical activity is maintained at an appropriate level to facilitate optimal pacing self-management.” This may help control the push/crash cycles that affect so many ME/CFS patients after exercise or other activity.
Experimentation with activities, pacing, rest periods, and symptom monitoring is an essential part of finding safe activity limits in each individual situation. Health care providers “should use caution during the creation and progression of [any physical] training program because the safety and effectiveness of these interventions in people with CFS/ME require additional research.”
Exercise of the wrong type or in the wrong amount will only make the symptoms of ME/CFS worse. Exercise must be attempted cautiously while patients stay within their limits. It can definitely be challenging for CFS patient to try and find the energy to fit exercise into their lives when they have problems just getting through daily living tasks, so the decision has to be made on an individual basis. Medical professionals need to have better understanding and compassion for CFS patients and the effects that exercise and activity has on our bodies and illness. As patients, we also need to have the willingness to be patient and experiment to see what works for us. As Jennifer says:
A new delicate balance must be found so that both sides can cooperate in supporting people with CFS to be as active as is safely possible.