Advise a sufferer with chronic fatigue syndrome to try some exercise and the reaction is almost sure to be hostile. “How can I possibly follow an exercise program when I can’t even walk up a very short flight of stairs?” would be the response; “The only thing that helps the fatigue and the pain is to rest.”
Yet Professor Richard Edwards, the director of Liverpool University’s Muscle Research Centre, in England, fervently believes that patients with chronic fatigue syndrome need periods of carefully graded exercise to get them gradually back to a more normal lifestyle. He argues that the complete rest usually prescribed for this condition triggers profound body changes, particularly in the muscles, which can result in complete debility.
Chronic fatigue syndrome, or myalgic encephalomyelitis (ME), as it is some times known, is a debilitating condition affecting countless people. While skeptics dismiss it as “yuppie flu”, or deny that it has an organic basis, believing it to be a simple manifestation of depression, there is some evidence that a virus is implicated. Scientists and doctors spend rather more time debating the finer points of cause and diagnosis than finding a practical approach to treatment.
The diagnosis of symptoms associated with chronic fatigue often depends on the specialist consulted:
- a cardiologist may diagnose an “effort” problem associated with the heart;
- a rheumatologist will call it a connective tissue disorder;
- a gastroenterologist irritable bowel syndrome;
- a neurologist ME;
- and a specialist in infectious diseases will refer to post-viral fatigue syndrome.
But Professor Edwards thinks that the label is irrelevant when it comes to treatment.
“Whatever triggers the fatigue in the first place, it leads to fear and misunderstanding,” he says. “Patients become anxious and fail to relax, and muscular tension causes pain. They try to reduce their symptoms by lowering their activity levels and start to become sensitive to their physical sensations. They may begin on the downward spiral before they realize it.”
Chronic fatigue syndrome sufferers, he says, often get little sympathy from families and employers, and are confused by the varying medical attitudes to their condition. “Let me make one thing clear chronic fatigue syndrome is not imaginary. It is a very real illness,” Professor Edwards says. “Sufferers are very sick and need rehabilitation to get them back to normal life.”
Professor Edwards and his colleagues have found that patients with chronic fatigue syndrome show an inability to sustain voluntary muscle power. But when their muscles are stimulated electrically, rather than depending on a message from the brain, muscle function is normal.
When a patient with chronic fatigue becomes inactive, this brings about biochemical and physiological changes. Blood circulation becomes poorly controlled, sensory systems are profoundly disturbed, muscle chemistry may be altered, and muscle strength itself then declines. These changes can result in symptoms such as muscular pain, pins and needles, dizziness, and altered sleep patterns.
Space travelers living for weeks in a weightless environment need to exercise to keep circulation and muscles in good trim, Professor Edwards points out.
“In the same way, patients with chronic fatigue symptoms need to break the vicious spiral of inactivity,” he says. “It leads to loss of physical capacity, loss of circulatory and sensory control, to depression and anxiety, and finally, total debility.”
Rebecca, a typical sufferer, now seems to have been helped by a gentle exercise program.
She was in the last year of her university course when she caught what the doctor diagnosed as 48-hour flu. Several weeks later she was still feeling exhausted and had difficulty in walking.
Knowing that the year was critical for her university degree she struggled into college each morning. By lunchtime about all she could manage was to get home and collapse into bed.
“At first the doctor just said: You’ll get better,” she recalls. “Then he started asking questions about my family, boyfriends, and whether or not I was coping with my studies.”
“The implication was that I was emotionally disturbed. But I had no personal problems and up until that time all my marks had been first class.”
“I had everything going for me and there was absolutely no reason for me to be depressed.”
A second opinion did not help: Rebecca was told by a consultant that she was suffering from depression, a connective tissue disease of ME.
Rebecca has since suffered a whole range of bizarre symptoms ranging from severe headaches, blurred vision, fear of noise, lack of concentration, loss of memory, and clumsy behavior, such as dropping objects or walking into things.
The muscle pains that started in her upper arms and legs spread to all parts of the limbs and her back.
“Sometimes the pain is just a dull ache, but at other times it is a searing type of pain. I can only describe it as feeling as though a sharp knife edge is being scraped along the surface of my bones,” she says.
“I don’t care what you call my illness. I just want to be able to lead a normal, active life again.”
Rest should be alternated with periods of exercise, Professor Edwards says, but persuading patients they need some exercise may be an uphill task.
“These are people whose whole lives have been completely altered, who have lost physical confidence and who now tend to look inwards instead of outwards.”
“They need to rediscover their physical confidence, and they need assurance that they are not irretrievably diseased.”
His patients are counseled by a physiotherapist about relaxation and breathing exercises, and each exercise program is tailored to the individual’s needs.
There are, however, some common ground rules: the patient should choose exercises they feel they can manage — whether it is walking or merely picking up a book — and the exercise should be carried out every day, regardless of pain or fatigue. Patients are told to try to do a little more each day and to keep a diary to monitor improvements.
The use of pedometers, which monitor the distance covered while walking, can provide encouraging evidence of an increase in muscular ability.
But because the symptoms can fluctuate dramatically, daily exercise programs are difficult to maintain. A patient may be able to walk a few hundred meters one day but the next day muscle pains may be so bad, or fatigue so intense, that the exercise is not resumed.
This causes further anxiety — even though anyone taking a form of exercise they are unaccustomed to will feel stiffness and pain afterward.
Professor Edwards admits his approach is not always successful, but nevertheless says that for many patients there has been a rewarding degree of rehabilitation or complete recovery.
Rebecca makes sure that she walks daily and does regular yoga exercises. For six years she has lived a quiet and often solitary life. Through sheer determination she managed to research and write a PhD thesis, with much of the work being done at the home between periods of rest. Last month was a milestone in her recovery. She started a part-time job and, so far, has been able to cope.