Chronic Fatigue Syndrome, ME, CFS, tiredness, Cognitive Behaviour Therapy, pacing, relaxation, Graded Exercise Therapy

Chronic Fatigue Syndrome (CFS) is a serious condition causing persistent fatigue (exhaustion) that does not go away with rest or sleep.  It is also referred to as ME (Myalgic Encephalomyelitis), which means muscle pain (myalgia) and a condition that affects brain function (encephalopathy). 

It is estimated that around 250,000 people in the UK have CFS. Anyone can get CFS, although it is more common in women than men.  Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows: 

  • Mild: you are able to care for yourself, but may need days off work to rest. 
  • Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon.
  • Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating.

It is not known what causes CFS however, various theories have been suggested, including:

  • A viral infection that you never seem to recover from
  • Problems with the immune system
  • An imbalance of hormones
  • Stress and emotional trauma

Do I have CFS?

CFS affects everyone differently and symptoms may change throughout the course of the illness. The main symptom is mental and physical fatigue, which is not alleviated by rest and impacts on your ability to carry out activities you would normally be able to do. Exercise may exacerbate fatigue although the effect may be delayed with the fatigue occurring hours or days after. The tiredness is often reported to be different to that experienced before and has been likened to a ‘flu like’ tiredness and heaviness.

Other symptoms include:

  • Muscular pain and /or joint pain
  • Severe headaches
  • Poor short-term memory and concentration and difficulty organising thoughts and finding the right words ('brain fog')
  • Painful lymph nodes (small glands of the immune system) and/or sore throats
  • Stomach pain and other digestive difficulties for example, irritable bowel syndrome and nausea
  • Sleeping problems
  • Sensitivity or intolerance to light and sound
  • Psychological difficulties, such as depression and irritability
  • Less common symptoms include dizziness, balance problems and difficulty controlling body temperature

When is CFS a problem?

CFS can be highly debilitating and pervasive; affecting all areas of your life. Some people are no longer able to live the life they used to be able to and have to reduce work hours, social activities or exercise which can be difficult to cope with.  Some people are unable to get out of bed or even hold conversations.  For those with milder symptoms, you may find it does not impact greatly on your life and that small adjustments to your day will enable you to live a fulfilling life. However, severity of symptoms can vary greatly and how you experience CFS will also differ from person to person. What matters is how it is affecting you as an individual. 

What helps?

The research into what causes CFS is ongoing. However, there are evidence based treatments available and links to support are increasing.  The National Institute of Clinical Excellence (NICE) has guidance for the assessment and treatment of CFS. Recommended treatment may differ slightly depending on symptoms and severity. However, a Cognitive Behavioural Therapy (CBT) approach combined with Graded Exercise Therapy (GET) and Activity Management are recommended. These enable people to gradually build up their energy levels using a programme of rest and activity designed for the individual. The CBT element will help you cope with the symptoms by exploring your beliefs about the illness and making some changes to what you do. For more information on CBT, please see our section on it.

There is no medication that specifically helps CFS however, in some cases it can help manage symptoms. For example, some people find painkillers help pain management (although other people do not find this beneficial).  For some people who experience pain or have trouble sleeping, anti-depressants such as Amitriptyline can be helpful.