Chronic fatigue syndrome: What can help relieve the symptoms in adults and children?

Cognitive behavioural therapy and graded exercise therapy could help people with chronic fatigue syndrome, but drugs have shown more adverse effects than benefits.

Chronic fatigue syndrome (CFS) is also often called "myalgic encephalomyelitis" or ME. CFS is a condition with a group of symptoms that can be very disabling. The main symptom is physical and mental fatigue after even a minor effort, which is not relieved by resting. But CFS can also involve aching muscles and joints, disturbed sleep, difficulty concentrating, headaches and depression. Really serious symptoms are not very common.

The cause of the condition is not yet clear, and there is no specific test that has been proven to establish whether someone has CFS either. CFS is more common in women than in men. Some viruses (like the Epstein Barr virus) increase people's risk of developing it. Because of this, CFS is also sometimes called "post-viral syndrome". People who have a history of problems like depression are also more at risk, but it is not known why. Depending on how they have defined CFS, researchers' estimates of the number of people affected by the condition vary.

CFS often arises in people between 40 and 60 years old, but some children and teenagers develop it too. Without treatment, most children and teenagers will have recovered within six years, whereas half or more of affected adults could still be having symptoms six years after the symptoms first appeared.

The number of treatment options for CFS has increased in recent years, and more research is being done to test whether the treatments work. Some treatments aim to manage the direct symptoms of the condition itself, and others to relieve some of the symptoms or problems that can come from having CFS. For example, people with CFS could also become depressed, anxious or physically unfit.

Researchers at the Centre for Reviews and Dissemination at York University in England were commissioned by NICE (the National Institute for Health and Clinical Excellence) to look for trials that could show whether any treatments can help adults and children with CFS. They found 70 trials where treatments were tested in altogether more than 4,700 people with CFS. For most of the individual treatments, however, the numbers of people involved are still too low to be able to come up with definitive answers about whether the treatments are likely to work, especially for people with very severe CFS.

Benefits of graded exercise therapy

The trials showed that graded exercise therapy helps relieve the symptoms of chronic fatigue syndrome more than other types of programmes like relaxation or flexibility training. It also helps more than simply giving people advice about what to do and how to manage their symptoms.

The principle behind graded exercise therapy is that the person starts at a level of activity that has been determined specifically for them. The level or intensity of activity is then increased a little at a time as the person begins to cope better without being harmed or getting more exhausted. This might help avoid the "boom and bust" pattern of overactivity and setbacks that happens so often in people with CFS. A vicious cycle may develop, where they do less and less in order to save energy, but this actually makes them feel more tired so they need even more rest.

Prolonged rest does not appear to be an appropriate treatment for CFS. In general, trying to become active again seems to be critical to people getting better. It is possible, though, that being too ambitious too quickly could be harmful.

Benefits of cognitive behavioural therapy

Cognitive behavioural therapy (CBT) is used to treat many chronic illnesses, with the aim of teaching people how to manage their symptoms in a different way. For example, it has been shown to help in rheumatoid arthritis. You can read more about that here. With the help of CBT, people can learn to change the way they think and behave. Thoughts like "I am always so exhausted that I will never be able to work again", for instance, just make things worse and hinder attempts to become more active again. CBT could help to alter or stop such thoughts.

Cognitive behavioural therapy is the treatment with the strongest research support. In CFS, it involves sessions with a trained therapist once or twice a week. The goal of treatment is to help people manage their symptoms better.

The trials showed that CBT usually helped people to be more active despite their extreme tiredness. Relaxation therapy and occupational therapy were also sometimes included to teach people how to manage their daily activities better. This means that what is called "cognitive behavioural therapy" in the trials is often really a mixture of different ways of managing the illness and its symptoms - mostly also involving some kind of support for activities. This could include exercise but also something like reading for a certain amount of time every day.

None of the people in the trials of CBT were reported to have experienced any harm from the CBT. Adults, teenagers and children all seemed to be able to achieve some overall improvement with these kinds of programmes. Teenagers with CFS were able to attend school more often if they had a course of cognitive behavioural therapy from a therapist with experience in helping people manage CFS. The researchers concluded, however, that it is too soon to be able to say exactly what kind of programme is most likely to help, or what qualifications and training the therapist needs.

Other treatments including drugs and complementary therapies

A large number of other treatments for CFS have been tried out, including:

• dietary changes,
• changes in sleeping habits,
• complementary treatments like acupuncture, vitamins and herbal or homeopathic medicine, and
• a variety of drugs.

All of the drugs that have been used to treat CFS so far can cause adverse effects. None of them have been proven to have a benefit. Research into treatments for people with CFS continues. With more research, it should be possible to learn which treatments and combinations of treatments reduce the symptoms of CFS better. As new research becomes available, we will update our information.


Author: German Institute for Quality and Efficiency in Health Care (IQWiG)

© IQWiG (Institute for Quality and Efficiency in Health Care)