By Erica Verrillo*
One of the ongoing debates among Chronic Fatigue Syndrome & Myalgic Encephalomyelitis (ME/CFS) clinicians, as well as their patients, is whether exercise is good or bad for patients with ME/CFS. The Centers for Disease Control and Prevention (CDC) maintains that patients with ME/CFS need to maintain a steady, low-impact exercise regimen to avoid becoming deconditioned. But while some physicians recommend exercise as one of their chief ME/CFS therapies, other clinicians disagree. They point out that exercise intolerance is a hallmark symptom of ME/CFS and that symptoms invariably worsen after any form of exercise.
Single-photon emission computed tomographic (SPECT) scans have shown that in ME/CFS patients who exercise, brain blood volume is reduced one to three days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with ME/CFS, exercise also lowers cortisol levels, which makes it more difficult for the body to control inflammation.
In addition, exercise in Chronic Fatigue Syndrome & Myalgic Encephalomyelitis leads to a rapid progression to anaerobic metabolism. Anaerobic exercise is any form of aerobic exercise that pushes heart rate to its limit. A runner who reaches a point of breathlessness is exercising anaerobically. Some of the metabolic changes induced by anaerobic exercise include increased production of ammonia and lactic acid (causing burning pain in muscles), lowered ATP production, and decreased dependence on the Krebs cycle. Patients who are severely ill can end up doing anaerobic exercise simply by walking a few feet.
It has been proposed by a number of researchers that mitochondrial dysfunction is what causes the post-exertion crash experienced by ME/CFS patients. Kuratsune et al. found a much lower rate of ATP synthesis after exercise in ME/CFS patients after exercise than in healthy controls. Lower production of ATP has effects throughout the body, but, as Dr. Paul Cheney points out, ATP production directly affects heart function. Given the results of the Peckerman studies on cardiac insufficiency in ME/CFS patients, it would be quite risky for those who are severely ill to embark on any kind of exercise program, no matter how gentle.
In addition to research showing reduced heart function, and altered cell metabolism in ME/CFS, researchers at the Workwell Foundation in California have found that after a CPET (cardio-pulmonary exercise test), patients with ME/CFS had a significant reduction in oxygen uptake when re-tested the second day. The 2-day CPET conclusively shows that patients with ME/CFS have metabolic abnormalities which not only inhibit their ability to exercise, but effectively prevent them from benefitting from it.
What Kind of Exercise to Do
For patients who are mildly ill, or who are well on the way to recovery, most Chronic Fatigue Syndrome & Myalgic Encephalomyelitis clinicians advise a very gradual reintroduction of exercise. Subaerobic exercise, that is, exercise that does not increase heart rate, is recommended once a patient is showing a return of overall health. (On a scale of 1-10, this would be 5 – 7.) The main advantage of subaerobic exercise is that it helps with blood circulation. It also puts little strain on ATP production, making it appropriate for people with ME/CFS-induced metabolic disturbances. Walking and swimming are probably the best forms of exercise for this purpose.
A good measure of when you may be ready to exercise is when daily household activities (e.g., sweeping, washing dishes, doing laundry) are no longer a challenge. Once you can function normally in your home, you can begin to walk. The amount of time spent walking can be increased as you begin to feel better. When you are able to walk for six or seven minutes without feeling short of breath, you can consider gentle stretching, yoga or “weightless” weight training to strengthen specific sets of muscles. (Some ME/CFS patients have had success using weight-lifting equipment set at zero to help tone muscles.)
Once you begin to exercise, it is important to remember that you are not in a contest. How fast you go, how many laps you swim, how many blocks you walk, or how much weight you lift is not only irrelevant, it can be counterproductive. Symptoms in most patients fluctuate from day to day, which means if you force yourself to stick to a daily exercise regime – even if it’s only walking around the block – you may very well cause a relapse. Your body will tell you when you can exercise, and when you shouldn’t.
GET and Daily Exercise Programs
GET is a training program that increases exercise in small increments on a day-to-day basis. Typically GET begins with active stretching, followed by range-of-motion contractions and extensions, done for only a few minutes a day for a completely inactive individual. Exercise is increased daily following a schedule until normal activity is resumed. GET is usually accompanied by CBT (cognitive behavioral therapy), a psychotherapeutic program designed to correct “illness beliefs.” The underlying concept of GET is that maintaining the habit of avoiding exercise perpetuates Chronic Fatigue Syndrome & Myalgic Encephalomyelitis symptoms.
The GET program has been met with a great deal of criticism. Both patient groups and researchers have pointed out that exercise intolerance is the hallmark symptom of ME/CFS and that a program of systematic exercise will inevitably cause relapse. Researchers who have investigated the mitochondrial defects and resultant cardiac insufficiencies that are common in ME/CFS patients have added that it may, in fact, be dangerous to force severely ill ME/CFS patients into any kind of exercise regime.
The supporters of GET answered this flood of criticism with an extensive randomized trial comparing GET, CBT, Pacing and specialist medical care in 641 ME/CFS patients. Predictably, the PACE trial, as it was called, concluded that GET and CBT could be added to specialized medical care to improve outcomes, but that Pacing (which limits physical activity and requires resting) is not effective.
Almost immediately after the PACE trial publication, the CFIDS Association of America responded with a five-page analysis, in which they pointed out that the cohort selected for the study was skewed. The PACE Group selected their subjects on the basis of the Oxford Criteria for ME/CFS, which only requires six months of fatigue for a diagnosis. This allows for the inclusion of patients with depression and other disorders.
In addition, the CFIDS Association pointed out that the conclusions drawn by the PACE study were biased, not just in the diagnostic criteria used, but on the basis of patients selected. The PACE study excluded severely ill or homebound patients. Nor did it include patients who had been ill longer than six years. In addition, the cohort was relatively young, with a mean age of 38. After a careful analysis, the CFIDS Association concluded that the only concrete result of the study was that a program of graded exercise might be somewhat beneficial to young, moderately or mildly ill patients with non-specific “fatigue” of short duration.
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According to a 2008 survey conducted by the M.E. Association, GET is one of the least successful, if not directly harmful, ME/CFS treatments. While ME/CFS doctors in the U.S. encourage gentle exercise in patients who are well on the road to recovery, they do not endorse graded exercise programs. In addition, most studies have concluded that GET has a negative impact on ME/CFS patients. Numerous ME/CFS patients have reported relapses, flares, and a general worsening of symptoms after starting the GET program.
Deconditioning and ME/CFS
While a number of physicians promote the idea that prolonged lack of exercise will worsen Chronic Fatigue Syndrome & Myalgic Encephalomyelitis by leading to “deconditioning,” there is little evidence to support this. In fact, research suggests the opposite.
In one of the few longitudinal studies of ME/CFS patients, Matthews and Komaroff found that physical capacity was not only undiminished, but had improved in 99 ME/CFS patients over a 10-year period – even though they had not engaged in exercise. There is plenty of anecdotal evidence from ME/CFS patients that even long periods of inactivity do not worsen the illness. There are also reports of patients who, after being treated successfully with Ampligen, Rituxan, or antivirals, have simply gotten up – sometimes after years in bed – and resumed normal activities. Once recovery is underway the body regains its strength fairly quickly.
*Adapted from Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verillo.
* Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon,Barnes & Noble, Kobo and Payhip (PDF file). Her website,CFSTreatmentGuide.com, provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog, with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation).
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