What is CFS/ME?

What is CFS/ME?

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue) and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities. People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person's symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday lives and their families. The illness may last a long time.

People with 'mild' CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with 'moderate' CFS/ME can't move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with 'severe' CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

There is no one way of managing CFS/ME that helps everyone but there are several options to try (see Managing CFS/ME).

Questions you might like to ask your healthcare team

  • What is CFS/ME and how long will I have it?

  • How will it affect my life and my family?

  • Are there any support organisations in my local area?

  • Where can I find self-help books and other information?

  • Who can provide information for my family/carers?

The contact details of some national support organisations are listed in More information about CFS/ME.