Many CFS/ME patients are aware that exercise makes their fatigue and pain worse. Often, especially early in the illness, exercise intolerance is a fundamental symptom ranking right up there with fatigue and cognitive difficulties. It's even listed as a minor criterion in the 1994 case definition.
For some CFS/ME patients, the exercise question may not arise until months or years into the illness. The newly ill may be basically bedridden, getting up only to attend to daily necessities of life like going to the bathroom, getting food and maybe, if it's a good day, taking a shower. A brisk 10-minute walk is completely out of the question. However, if symptom severity improves or if an individual is effected by CFS/ME to a lesser degree, exercise may be attempted but is often unsuccessful. Why?
Answering this question may be complicated by the general consensus that exercise can prove beneficial to an individual with fibromyalgia (FM). Could the answer possibly be to exercise to capacity if you have FM and not at all if you have CFS/ME? What about the thousands of individuals who share symptoms of both or the indications that CFS/ME and FM are actually the same illness? And what do experts recommend for those who've tried several times to return to some higher level of physical health and failed? If exercise is recommended, what kinds?
A research puzzle
The research done so far into exercise and its effect on CFS/ME and FM has led only to more questions and confusion. 'I agree the literature on exercise in CFS/ME is small and inconclusive,' said Dr. Anthony Komaroff, a director of the American Association for CFS/ME and a doctor at Brigham and Women's Hospital in Boston. 'I also think the literature demonstrates some patients respond well and others clearly do not respond well, suggesting that there are subsets of patients among those with CFS/ME: a universal rule is unlikely to apply to all patients.'
Dr Komaroff said that, based on his clinical experience, he urges patients to try limbering exercises daily and mild aerobics starting off very gradually, three times each week. 'It is my general experience that people feel better with such a program, although there will be unpredictable times when they suddenly feel sicker the day after even light exercise,'.
Dr. Marsha Wallace, a general practitioner in Washington, D.C., has a similar approach. 'I think exercise for people with CFS/ME is like any other modality - it's not for everyone and the dose has to be adjusted. I like to see my patients doing something, even if it's just to start with some stretching and later some muscle toning. The key is to avoid doing anything for which there is significant payback, even over the next several days.' Dr Wallace suggested cutting back by at least 20% the activity that makes you crash and try again.
Not everyone agrees, however, that exercise is beneficial to a person with CFS/ME. For instance, Dr Martin Lemer a Michigan researcher and practitioner of CFS/ME believes that people with CFS/ME should refrain from exercise, especially aerobic activity, as much as possible. This is because Lemer's research indicates that many CFS/ME patients have a viral infection of the heart and this infection is exacerbated by exercise.
Ongoing research effort
Dr Sisto, a research scientist and physical therapist at The New Jersey CFS/ME Centre, is conducting a study in order to assist in overcoming the dilemma of how much exercise, if any, a patient should engage. Sisto's research is attempting to determine effective methods of assessing a safe level of exercise for CFS/ME patients. He believes that this is crucial because 'It's important to counteract the effects that severe physical inactivity, which is a significant part of CFS/ME, can have on a person's health. Those effects can include cardiovascular disease and bone mineral loss'.
The centre's current project consists of a series of pre-tests, 10 weeks of an individualised treadmill walking program three times each week, and post testing. Only 15 people have completed the fitness trial.
The patients' point of view
Despite what the research says, many CFS/ME patients rely on their past personal experience to gauge their ability to exercise. If a CFS/ME person wants to begin exercising it may be useful to begin slowly, increase intensity and frequency even slower, and stop before your body is tired. The author of the CFIDS Chronicle (American magazine) obtained the views of various people with CFS/ME on physical activity.
I never exercised prior to CFS/ME. And when I did start, I didn't push it,' said a sufferer Helen Dopperpuhl of Shawano, Wis. 'I worked in gradual increments over a two-year time span. For me, it was a major factor in my recovery. I don't mean to lay a guilt trip on anybody by saying I regularly jog two miles. But if I didn't say anything about it, it would be like me withholding the name of a medication or supplement that had given me great improvement.'
This approach is shared by others. 'I do bed exercises every day,' says a woman who requested to remain anonymous. 'Sometimes, they're not anything more than deep breathing exercises. I do stretches of some kind for flexibility and range of movement. I lift small, two-pound weights until I either break out in a sweat or start getting palpitations. My doctor told me to lift slowly while counting to seven, hold for a count of seven and then drop slowly. Exhale on the lift and inhale on the drop. Between lifts, breathe deeply three times, inhaling through your nose and exhaling through your mouth, counting to seven for each inhale and exhale. Afterward, cool down by breathing slowly and deeply. On good days I can do 40 reps. On medium days I might do 10. On bad days I don't even bother.'
Sue Noble of Orcas Island, Washington, also believes in stretching. 'After much pain I find that my body easily likes a 15 minute stretching regime every morning (if I don't I'm achy all day), followed by a short moderate walk.' Similarly, Angela Rawls of Smyrna, Texas advocates physical activity. 'I have to exercise,' she said. 'My muscles were withering and hurting until I began doing so. While it's very light exercise, it definitely helps me. I have yet to graduate past 10 minutes a day, but that 10 minutes is very important to me. It really does make me feel better.'
However, as previously mentioned, others find that exercise is simply not an option. Cheryl Laird of New Mexico advocates this position. 'I found out the hard way that forcing myself to exercise - especially aerobically - repeatedly led to terrible crashes.' I keep reading that with CFS/ME even a small amount of exercise leads to relapses, while in FM the articles usually suggest exercise. Since I have both, I just try to do some simple stretching.'
Another sufferer, Lyn Bjorianan agrees. When I exercise, I pay; any walking, like shopping, gets me in the end. I'm really happy for those of you who can exercise - and wistfully envious - but not dumb enough to try to emulate you again,'
One day at a time
Thus to conclude, it appears that not only does exercise tolerance vary quite significantly from day to day but also between individuals. It may be that listening to your body is the most important factor in making a decision as to whether you should exercise and determining tolerance level. Finding the balance may be a solution. 'The idea is to find a level of activity that you can sustain,' says Dr Wallace. 'I don't believe in pushing when you feel bad.'