Understanding M.E.

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M.E./CFS is characterised by a varying course, with 'good' days and 'bad' days.

Some would describe M.E./CFS as feeling rotten most days, with varying symptoms. Sleep and rest is typically unrefreshing, and people with M.E./CFS often feel at their worst in the mornings.

The illness is hugely disabling. It affects all areas of functioning, including how a person with M.E./CFS is able to cope with work, education, family and social life.

Many people with M.E./CFS take early retirement, and children and young people are often unable to attend school or college full time. Some people with M.E./CFS manage to cope with part time work or education, especially if suitable arrangements can be made. Employers are obliged by anti-discrimination legislation to make reasonable adjustments for disabled employees. However, severely-affected sufferers may be housebound or even bedbound.

The effort of going out, walking, standing, and being with other people in noisy places can cause a worsening of symptoms, so people with M.E./CFS need to pace their activity levels carefully.

Mobility aids such as wheelchairs, electric scooters or just a walking stick might be needed.

People with M.E./CFS may look OK, and apparently well, but actually spend a large part of the day either resting or leading a very restricted life in order to be able to achieve brief activity. Some people even manage to work full-time, but they typically crash all weekend and are unable to have a social life as well as work.

There is a broad spectrum of disability caused by M.E./CFS. For more on this, see Dr Myhill's ability scale.

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