What is chronic fatigue syndrome (CFS)?

Chronic fatigue syndrome (CFS), also known as ME (myalgic encephalomyelitis), is a complex illness involving debilitating fatigue along with other symptoms. The fatigue is severe enough to interfere with daily activities and is not relieved by bed rest. Although a standard treatment for CFS has yet to be developed, many people improve through personalised exercise and stress management programmes.

Chronic fatigue syndrome: Symptoms

Chronic fatigue syndrome (CFS) can now be diagnosed by looking for a pattern of specific symptoms - physical and emotional, but the causes of the illness are still a mystery. Possible culprits include a faulty immune system, nutritional deficiency or a viral infection that somehow triggers CFS. Scientists are also exploring a possible connection to sleep disorders, anaemia, low blood pressure or other metabolic abnormalities.

Chronic fatigue syndrome symptoms: Intense fatigue

Everyone feels sluggish now and then. The difference with chronic fatigue syndrome is that the fatigue is overwhelming and lasts for at least four months. It may get worse after physical or mental exertion, and a full night's sleep provides little, if any, relief. The fatigue is often accompanied by other troubling symptoms, such as long-term (chronic) pain.

Chronic fatigue syndrome symptoms: Recurring pain

Many people with chronic fatigue syndrome develop recurring pain, including headaches, sore throat, muscle pain and joint pain. The joints may hurt without showing signs of redness or swelling. The cause of these symptoms is not well understood, but the pain can often be managed with medication or physiotherapy.

Other symptoms of chronic fatigue syndrome

Beyond fatigue and pain, people with chronic fatigue syndrome may experience:

• Memory problems
• Trouble concentrating
• Sleep disturbances
• Weakness or dizziness

Who is at risk?

It is estimated that around 250,000 people are affected by chronic fatigue syndrome in the UK. It is more common in women than in men. Although people of any age can get CFS, it most often develops in the early 20s to mid-40s. There may be a genetic component, but there is no evidence that CFS is contagious.

Chronic fatigue syndrome in children and teenagers

Chronic fatigue syndrome (CFS) is very rare in children and only slightly more common in teenagers. The good news is young people with CFS are more likely to improve than older patients. If your child is diagnosed with CFS, consult a specialist to create a tailored exercise and management programme. Find constructive ways for your child to cope, and seek out support groups.

Diagnosing chronic fatigue syndrome

There are no blood tests or brain scans for chronic fatigue syndrome (CFS), but your doctor may run tests to rule out other conditions. CFS is diagnosed when you have:

Severe persistent or recurrent fatigue, with a clear starting point, for at least four months in an adult (three months in a child or young person), not explained by other conditions, where it substantially reduces the amount of activity a person can do, and where it feels worse after physical activity

And one or more of these symptoms:

• Headaches
• Poor mental function, eg difficulty thinking or concentrating
• Tender lymph nodes that are not enlarged
• Muscle or joint pain without inflammation
• Sore throat
• Unrefreshing sleep, difficulty sleeping or insomnia
• Symptoms worsening after physical or mental activity
• Feeling unwell or having flu-like symptoms
• Dizziness or nausea
• Heart palpitations without heart disease

How chronic fatigue syndrome impacts daily life

Chronic fatigue syndrome tends to follow a cyclical course. You may experience periods of intense fatigue followed by periods of well-being. It's vital not to overdo it when you're feeling well, because this may trigger a relapse. Most people with CFS are prone to post-exertional malaise, meaning that symptoms worsen after strenuous physical or mental activity. Work with your doctor to determine the right activity level for you.

Treatment options for chronic fatigue syndrome

There is no cure for chronic fatigue syndrome, and no prescription drugs have been developed specifically for its treatment. Work with your doctor to develop coping strategies, such as managing your activity level and taking medicines to control symptoms. Focus on feeling better rather than feeling "normal".

Graded exercise therapy

Studies indicate gradual, guided exercise therapy is helpful for people with chronic fatigue syndrome. Graded exercise therapy starts slowly and gradually increases the duration of exercise over time. The goal is to avoid overdoing it and experiencing a "crash". It's important not to avoid all physical activity, or the muscles can become deconditioned. Graded exercise therapy can help you adapt your activity level to the fluctuations in your condition.

Medicines

Medicines are primarily used to relieve symptoms, such as sleep problems and chronic pain. Some prescription medicines, such as tricyclic antidepressants, may reduce pain and improve sleep. Many people with chronic fatigue syndrome are sensitive to medications and may need lower doses. Ask your doctor or pharmacist about the benefits and side effects of any medicine you take, even if they are over the counter.

Counselling

A counsellor may help you develop coping skills that will decrease anxiety, depression, anger and guilt. A therapist may recommend combining medicine and psychotherapy. Cognitive behavioural therapy (CBT) aims to enhance coping by changing dysfunctional thinking and behaviour. Recent studies show this form of therapy is a helpful component of chronic fatigue syndrome treatment.

Complementary therapies

Complementary treatments - sometimes called alternative therapies - may aid in pain management, although more research is needed. These include stretching therapies, toning exercises, massage, hydrotherapy and relaxation techniques. Acupuncture may also treat pain. Make sure you consult qualified practitioners who are knowledgeable about chronic fatigue syndrome.

Herbs and supplements

Talk to your doctor about herbs and supplements before your try them. Supplements may interfere with prescribed medicines. People with chronic fatigue syndrome should consult a qualified herbal practitioner before taking herbal remedies.

Scam alert

Many nutritional supplements and vitamins are targeted toward people with chronic fatigue syndrome (CFS). These products may not be regulated to the same degree as prescription medicines, and most have not gone through extensive testing in people.

Chronic fatigue syndrome and diet

Doctors recommend a well-balanced diet for people with chronic fatigue syndrome (CFS), but no specific dietary strategy has been widely accepted. Essential fatty acids, found in nuts, seeds and coldwater fish, may reduce fatigue, but more research is needed. Some people with CFS notice their symptoms are triggered by certain foods or chemicals, including refined sugar, caffeine and alcohol.

Chronic fatigue syndrome and sleep

Most people with chronic fatigue syndrome experience sleep disturbances. This may include difficulty falling asleep, restless legs, vivid dreaming and frequently waking up in the night. To create healthy sleep habits, establish a regular bedtime routine and engage in light exercise and stretching at least four hours before bedtime.

Chronic fatigue syndrome and depression

Chronic fatigue syndrome is not a psychiatric illness, nor a form of depression. However, up to half of people with CFS become depressed during the course of their illness. This may be the result of the difficulty in adjusting to life with a debilitating, chronic condition. Depression generally responds well to treatment, and getting it under control can make CFS easier to cope with.

Tips for family members

Chronic illnesses like chronic fatigue syndrome may impact the whole family. Consult with a mental health professional to learn how to cope with changes in family dynamics. Don't expect your loved one to "snap out of it" and return to his or her usual activities. Try to be supportive, because emotional health is vital for anyone coping with CFS.

Outlook for chronic fatigue syndrome

The percentage of people who make a full recovery from chronic fatigue syndrome is not known, but many people enjoy long periods of remission, especially by learning to manage their activity levels. Early treatment with stress reduction and graded exercise therapy may increase the chances of improvement. These therapies have been effective in many cases.

Related reading

• ME/CFS; Your guide to the condition
• Coping with chronic illness and depression
• Chronic pain: Why not to ignore it
• When aches and pains disrupt sleep
• ME/CFS: Finding help