Introduction to M.E.

Myalgic Encephalomyelitis (M.E.) is a long-term, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.

This chronic condition affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

People with M.E. experience severe, persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms.

Not everyone will experience the exact same symptoms so it’s important not to compare someone who has M.E. to another person who has the illness. People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, while others can remain ill for a number of years and may not get better. Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.

 

A varying degree of severity

The National Institute for Health and Care Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as other chronic conditions such as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, and congestive heart failure. Other research shows that people with M.E. score lower overall on health-related quality of life tests than most other chronic conditions.

The NICE guideline for M.E. outlines three levels of severity in M.E. – mild, moderate and severe – these are categorised as follows:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

Even in its so-called mildest form, M.E. can have a significant impact on a person’s life, and not just on their health.  A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.

 

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