By Carol Swallow
The medical world is finally taking chronic fatigue syndrome seriously. That's good news for sufferers, says Carol Swallow
In the 1980s, it was labeled yuppie flu, and sufferers were dismissed as whingers, hypochondriacs or just plain lazy. Many doctors believed it was "all in the mind" and refused to take it seriously. This year, however, the chief medical officer [in England] declared chronic fatigue syndrome (CFS) a real medical condition and promised the 150,000 sufferers of the illness, which causes crippling tiredness and flu-like symptoms that more research would be carried out to find the best ways to treat it. The results of the latest study commissioned by the Department of Health (DoH) show that regulated exercise and psychotherapy are far more effective than drugs, and that the antidepressants often prescribed for patients in the past do not help at all.
With no confirmed cause of CFS, the more serious form of which is sometimes called ME (myalgic encephalomyelitis), even doctors who acknowledge it find it difficult to diagnose. Symptoms include bouts of overwhelming fatigue, accompanied by painful muscles, aching joints and swollen glands. At its worst, the disease leaves many patients unable to talk or watch television for more than a few minutes at a time because their eyes sting and their ears hurt. While some people are better after a year, many find the illness lingers for decades. In about 5% of cases, sufferers eventually become bedridden, and one in three has to resort to using a wheelchair.
According to Brian Dow, a spokesman for the charity Action for ME, there are several theories about the causes of CFS. "A viral infection may play a part – many people develop it after having the Epstein-Barr virus, or glandular fever. Some have a genetic predisposition, and stress or depression are also thought to be significant triggers."
Some researchers have suggested that CFS patients become infected with mycoplasma (bacteria-like compounds that damage the immune system), but this has never been confirmed. "As nobody really knows why it happens, it is difficult to know how to treat it," says Dow. "It is thought that combined therapies are most effective.
In the DoH research, which was carried out at the University of York, cognitive behavior therapy (CBT), a means of helping patients to modify their thinking, and graded exercise therapy, a tightly structured and extremely gradual program of aerobic activity, were shown to be the most effective mix.
Although CFS is not a psychological condition, it does have some emotional symptoms that CBT can help to address. "It has been suggested that certain personality types, such as the overly active or high-achievers, are more prone to the condition, and CBT can help them to change their behavior patterns so that they don't force themselves to do too much," explains Dow. "The problem is that only a few psychiatrists are qualified to practice CBT. You can go privately, but there is up to a two-year waiting list to see them on the NHS.
With exercise, he says, there is a fine line between therapeutic levels and overdoing it. "Exercise too heavily and you take two steps backwards," he says. "There are two options: progression should be very, very gradual, or you can exercise according to what doctors call a 'pacing' regime, which means you work out when you feel okay and rest when you don't.
Supplements have helped some people – elderberry and antioxidant vitamins are particularly effective for boosting the immune system, and some sufferers have been found to be deficient in magnesium. For others, including Louise Evans, 33, a journalist from Birmingham who has mild CFS, the only solution is to rest until they feel better. "I had glandular fever in my early twenties and have suffered intermittently with muscle pain and fatigue ever since."
"After countless blood tests, a new doctor diagnosed CFS," she says. "On average, I get an attack every two months – sometimes when I am stressed, but not always. My eyeballs feel like they are on fire, my whole body aches and I have a raging temperature. For two days, I am totally wiped out and lack the strength even to lift a book or the phone. Through trial and error, I have found that elderberry supplements work, and that regular exercise, interspersed with complete rest, helps my body to cope. It can be grim, but you have to learn to live with it or it would ruin your life."
Source: Action for ME: 01749 670799; www.afme.org.uk. Received via Co-Cure.