First things first... ME what?

The most obvious starting place is to go back to basics and catch up for those of you who are a little confused by the modern acronym-philic world we live in. What is ME? The best concise answer I have found online so far is here at the ME research page.

This is what they say:

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Early reports dating from 1934 described epidemics of the illness (see Research Publications on ME epidemics for more information) — such as the 1955 outbreak at the Royal Free Hospital in London — but nowadays it is more common for endemic (sporadic) cases to be identified. ME is classified by the World Health Organisation as a neurological illness (International Classification of Disease 10: G93.3).

The cardinal symptoms of ME are profound, generalised post-exertional loss of muscle power (fatigability); muscle pain that may include tenderness and swelling; and neurological signs. Patients are also prone to relapses which may take the form of recurrences of the original systemic illness, or fresh episodes of muscle weakness, neurologic changes or well-defined cognitive problems. As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is post-exertional, often delayed, and quite unlike the ‘fatigue’ experienced by healthy people.

The cause of ME is still unknown, but there is unlikely to be one single causative agent. Several early epidemics appear to have been triggered off by an outbreak of an infection with enteric organisms or poliovirus which then subsided, and many patients report an infectious onset to their illness. However, in others, there may have been a variety of contributing factors — infectious, traumatic, environmental and endogenous — all of which can lead on to a condition which shares a set of common symptoms.

Why do some people use the term ME/CFS?
During the 1990s, the term ‘chronic fatigue syndrome’ (CFS) came into vogue. Since there was no specific diagnostic test for ME, and since post-exercise ‘fatigue’ was one of its prominent symptoms, people with ME began to be diagnosed with ‘CFS’. In recent years, however, there has been a growing recognition that the diagnosis ‘CFS’ — based on a list of vague non-specific symptoms — is so broad that it encompasses a range of diverse patient groups. A recent revised Canadian definition has suggested that people with ME be recognised as a separate subgroup of CFS. At present, efforts are being made to remedy the diagnostic confusion and meanwhile the term ME/CFS is frequently used (see ME/CFS: A research and clinical conundrum for more information). Of course, none of this alters the fact of the illness for thousands of people, and the lay term ME is still used by patients, patient groups and charities (including ME Research UK) to describe the illness affecting people diagnosed with ME/CFS, including that subgroup of ‘CFS’ patients with an organic biomedical illness, neurological signs and symptoms.

Some key facts about ME/CFS
It is a real, often relapsing, debilitating illness, affecting up to 150,000 people in the UK, with similar rates of incidence in Europe, USA, New Zealand and Australia.

ME is recognised as a neurological illness by the World Health Organisation.

A report to the Chief Medical Officer of England in 2002 stated that ME/CFS “is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge.”
Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with some house/bed-bound.

Characteristic symptoms include muscle pain with physical and mental exhaustion following normal activities; quite different from what is normally experienced by healthy people.
ME/CFS has a huge impact on the lives of families and carers, but little, if any, support is available to them. ME/CFS also affects children.

The cause is still unknown, and no cure or effective treatment has yet been found.