CFIDS patients have always known among themselves that exercise makes their fatigue and pain worse. Especially early in the illness, exercise intolerance — activity intolerance, in fact — is a hallmark of the disease, ranking right up there with fatigue and cognitive difficulties as a fundamental symptom. It’s even listed as a minor criterion in the 1994 Fukuda definition.

For most CFIDS sufferers, the exercise question usually doesn’t arise until months or years into the illness. The newly ill are often 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.

But if symptom severity improves, many try to begin or return to an exercise program, and many fail. Why?

Further complicating the conundrum is the fact that some research into fibromyalgia shows that exercise can help improve overall health and lessen symptoms of that condition. If CFIDS and fibromyalgia are the same illness, as some believe, is the answer to exercise to capacity if you have fibromyalgia and not at all if you have CFIDS? What about the thousands of us who share symptoms of both; what should we do? And what do experts recommend for those of us who’ve tried several times to return to some higher level of physical health and failed? What kind of exercise is the best for us?

A research puzzle
The research done so far into exercise and its effect on CFIDS and fibromyalgia has led only to more questions and confusion.

The website www.networx.com.au/mall/cfs/, kept up-to-date by Ted Shaw, an advocate in Australia, contains references to 31 journal articles about CFIDS and exercise. But if you were to wade through all of them, you wouldn’t find a consensus.

Some researchers say their studies show aerobic exercise is crucial. The British Medical Journal favors this view in researchers it publishes.

SueAnn Sisto, PhD, and other researchers have shown that carefully limited or graded exercise helps some patients.

And some studies, most notably those of Dr. Martin Lerner into viral infections affecting the heart, suggest that exercise can be harmful for some patients.

The bottom line: Almost all researchers agree that finding the point at which exercise is a positive influence in a CFIDS patient’s overall health is problematic. And finding exactly how much exercise is good and for what subset of patients is the crux of the matter. They all agree more work needs to be done.

The specialists’ opinion
And if patients are confused about exactly what they should do, they’re not alone: None of the CFIDS specialists I talked with had a pat answer, either. Each believes that exercise and CFIDS are best handled on a patient-by-patient basis. Furthermore, most agreed that the research done so far on the subject of CFIDS and exercise is not conclusive.

"I agree the literature on exercise in CFS/CFIDS is small and inconclusive," said Dr. Anthony L. Komoroff, a director of The American Academy of CFS. "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: a universal rule is unlikely to apply to all patients."

Dr. Komoroff 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.

"In general, it's my 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," he said.

Leonard Jason, Ph.D., professor of clinical psychology at DePaul University, called the issue "a complex one."

"No question, some exercise is important. The key is how much and when. Pushing a person who is already exhausted is not generally helpful."

Dr. Jason wrote an interesting article in the Fall 1997 issue of the Chronicle detailing how CFIDS and fibromyalgia patients can help avoid relapse by relating their perceived amounts of energy to their expended energy, or in PWC vernacular, "not overdoing it."

"What is often not considered is the overall amount of energy that a person with CFS exerts in a day," he said. "If they’re already beat due to doing some shopping and dealing with family crises, than to add on additional exercise might be rather counterproductive. However, trying to keep the expended and available energy somewhat similar can lead to increases in available energy, and the reserves to begin a gentle, steady exercise program."

Dr. Marsha Wallace, a general practitioner in Washington, D.C., considers exercise as just one of the many things in her arsenal to fight illness.

"I think exercise for PWCs is like any other modality — it's not for everyone and the ‘dose’ has to be adjusted," she said. "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 activity that makes you crash to at least 80 percent and try again.

"The idea is to find a level of activity that you can sustain," she said. "I don't believe in pushing when you feel bad. It also helps to break activities up when possible. So two 10-minute sessions on a treadmill, for those at that level, may be better than one 20-minute session. It's also important for people with NMH (neurally mediated hypotension) to build up the tone in their legs."

Ongoing research effort
Dr. Sisto, a research scientist and psychical therapist at The New Jersey CFS Center, is heading up a study that is designed to find a level of exercise that CFIDS patients can safely tolerate.

"It’s important to counteract the effects that severe physical inactivity, which is a significant part of CFS, can have on a person’s health," said Dr. Sisto. Those effects can include cardiovascular disease and bone mineral loss.

The center’s current project consists of a series of pre-tests, 10 weeks of an individualized 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 CFIDS patients rely on their past personal experience to gauge their ability to exercise. The bottom line, say those with experience: Begin slowly, increase intensity and frequency even slower, and stop before your body is tired.

"I do bed exercises every day," says rosebud <rosebud@g-net.net> of tk on alt.med.cfs, a newsgroup for CFS sufferers. "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, gradually counting to 7, hold for count of 7, drop slowly, gradually for count of 7. Exhale on the lift and inhale on the drop. Between lifts, breathe deeply, inhaling through your nose and exhaling through your mouth, 3 times, count to 7 for each inhale, exhale. Afterwards cool down by breathing slowly and deeply, lying down as long as you need to. 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 painful trial and error, I find that my body really likes a 15-minute stretching regime every morning (if I don't I'm achy all day), followed by a short, moderate walk."

"I found out the hard way that ‘forcing myself to exercise’ — especially aerobically —repeatedly led to terrible crashes," says Cerryl Laird of New Mexico. "I keep reading that with CFIDS 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."

Others point out that they feel better overall if they stick to any exercise program.

"Most of the time I feel like Sisyphus, the guy rolling the rock up the hill," admits Su Neuhauser of Chicago. "When I have a serious relapse, I just can't exercise vigorously. But if I have the least bit of energy, I go for it. Yes, it hurts, both while I am exercising as well as afterward for days. But I also need to sweat and get an endorphin high during those good periods. If I am too weak and not ready to do it my body will let me know —rapid heartbeat, dizzyness, faintness and nausea."

Neuhauser also points out that she avoids increasing the amount of exercise she does, instead concentrating on maintaining a consistent level of exercise over time.

"I could swim 15 laps a year ago, and I can still only swim 15 laps," she said. "Next year I'll still be swimming 15 laps. That's because of the crashes in between the relative good periods. So I set no goals other than: Get to the gym, do whatever to increase the aerobic capacity of the heart just a little, sweat a little, shower and go home."

One day at a time
Others find that their ability to exercise varies widely, depending on their health at any given time.

"About four years ago, I had some energy I hadn't had before and I decided to take advantage of it. I began to take walks, short ones at first," said Cathy Beedle, a 45-year-old former nurse who lives in Zimmerman, Minn.

"Gradually, I was able to do more. I bought myself some nice walking tapes and by the end of that year, I was able to walk three miles a day at a bit less than three miles per hour. Then, I got the flu. Afterward, I tried to resume walking. I went down the driveway and nearly passed out. I tried and tried into June of the next year, trying at least once or twice a week. I’ve never gotten beyond the mailbox."

Others, burned once or twice, simply gave up.

"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," said Lyn Bjorkman.

"I became so ill after every attempt to exercise that I ended up in bed for a month at a time, not just fatigued, but with all the horrors this illness can bring and on short term disability," said Ellie Meehan. The 51-year-old former computer salesperson from Loveland, Ohio, has been disabled since 1989.

Still others, albeit a smaller group, say exercise has helped them a great deal, and perhaps even attributed to their partial recovery.

"I never exercised prior to CFIDS. And when I did start, I didn't push it," said 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."

"I have to exercise, " said Angela Rawls of Smyrna, Texas. "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."

Rawls stresses that PWCs should "do what you know you can do, not what others think you should do."

And that’s a good point. Most veteran PWCs find that listening to your body is the most important factor in making a decision as to whether you should exercise.

"Finding the balance is the key," said Dopperpuhl. "You need to find the right balance between activity, exercise and rest. It’s a very delicate balance, and everybody's balance point is different. I realize that like with any other treatments for CFIDS that exercise only helps a subset of patients, just like sodium or melatonin or whatever."

Patti Schmidt is a newspaper editor on long-term disability due to CFIDS. She is president of the Montgomery County (Pa.) CFIDS Support Group and a board member of The CFIDS Association of America. She belongs to a fitness club but spends a lot more time in the whirlpool than she does in the pool or the gym.