Terminology

ME (Myalgic Encephalomyelitis) the traditional British term, now considered inaccurate, although the initials ME are still used. A more accurate description of the illness is now thought to be Myalgic Encephalopathy.

CFS (Chronic Fatigue Syndrome) sometimes used as an umbrella term for a variety of fatigue syndromes, but more increasingly used as an alternative for ME.

PVFS (Post Viral Fatigue Syndrome) a condition which specifically follows a virus and unlike the others, can be short lived.

CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) An American term.

What is ME?

M.E. (Myalgic Encephalomyelitis) is a potentially chronic and disabling neurological disorder, which causes profound exhaustion, muscle pain and cognitive problems such as memory loss and concentration. Other symptoms that are common include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches. The immune system is also thought to be affected and there may be a persistent virus present in the body.

In the more recent past there were misconceptions that only certain social classes were affected and many people regarded the illness as a relatively mild condition - some even doubted its very existence. In fact, around 20% of sufferers are so severely affected that they are either house or bed-bound and have enormous difficulty performing even basic personal tasks unaided.

For most people, however, the illness is less severe. The vast majority of people find that their symptoms fluctuate from day to day. Profound physical exhaustion can be brought on by minimal activity and is not necessarily improved by rest.

What causes ME?

It is estimated that around two-thirds of all cases are preceded by a viral infection of some kind. Undetected bacterial infections, vaccinations, allergies or food sensitivities, exposure to chemicals and trauma are among the other possible triggers.

Some patients report periods of stress during or before the viral infection took hold. However, there are many sufferers who are not able to give a precise moment when the illness took hold and recall feeling increasingly worse over a prolonged period of time.

It is understandable that, in the absence of one, simple explanation, there has been much debate about the actual nature of M.E.

How does ME affect people's lives?

Careful pacing of activity and rest is essential to bring about improvements. Sufferers have to try to stay within their energy levels or they may make their condition very much worse. These energy levels may vary, not only from person to person but also with time: from month to month, week to week or even hour to hour. A sufferer may be able to go for a short walk one day and the next day not be able to get out of bed.

Sufferers may also have to adjust their diets, eating less sugary snacks and processed foods, and they may develop intolerances to some common types of food such as wheat and dairy products.

The majority of sufferers have to give up their jobs and make other adjustments to their life styles in order to stay within the limits of their energy. These adjustments can be extremely traumatic. Families may be torn apart under the strain. Needless to say, these problems only add to the misery of what is already a dreadful illness.

What do our ME groups do?

Both groups have monthly meetings where we get together to support sufferers and carers alike, of all ages. We have interesting speakers most months providing information on alternative therapies, benefits, etc. We also have occasional organised outings. The great success to date of both groups is evidence of the benefit derived from all our members.