There are a number of different names for what is an illness of uncertain cause, that affects many thousands - current estimates suggest 250,000 people in Britain.
- Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
- Chronic Fatigue Syndrome or “CFS”
- Post-Viral Fatigue Syndrome or “PVFS”
- Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”.
All types of people and all ages can be affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases onset is linked to a viral infection. Other triggers may include an operation or accident, although some people experience a slow, insidious onset.
Effects In some the effects may be minimal but for many, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.
Prognosis NB it is important to obtain a positive diagnosis from a qualified medical professional.
Most people with ME/CFS fall into one of four groups:
- Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
- The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
- A significant minority, who remain severely affected and may require a great deal of practical and social support.
- A few who show continued deterioration, which is unusual in ME/CFS. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses.
Research results indicate that ME/CFS often becomes a chronic and disabling illness, with complete recovery only occurring in a small minority of cases. The high level of disability associated with ME/CFS often stems from a combination of symptoms such as fatigue, pain, sleep disturbance, cognitive impairment, and, in some cases, an associated depression.
Studies of functional status and quality of life measures also confirm that the scale of impairment across a range of physical and mental activities can be just as great or greater than is seen in many other chronic medical conditions.
Treatment There is currently no accepted cure and no universally effective treatment. Treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others. An early diagnosis together with adequate rest during the acute phase and during any relapse appear to bring the most significant improvement.
Controversy ME/CFS has attracted much controversy. For many years there was debate as to whether it was actually an illness at all. Many influential bodies (e.g. World Health Organisation, Department of Social Security, Department of Health, Royal Colleges of Physicians, Psychiatrists and General Practitioners) are now in agreement that it is real.
Two major questions occupy the minds of people involved: “What is it?” and “What is to be done about it?” While there is some consensus on what triggers ME/CFS, what then causes it to become chronic is a topic of hot debate. There are two schools of thought: one favours ‘psychiatric’ or ‘behavioural’ reasons: the other (supported by The ME Association) argues ‘physical’ reasons.
It is also possible that the illness currently defined as ‘Chronic Fatigue Syndrome’ is actually a number of different conditions, all characterised by similar symptoms. (A ‘syndrome’ characterises an illness by its symptoms, not by the underlying disease process.)
‘What is to be done about it?’ Until we have information there will remain a wide range of views on how people can be helped. Research into causes, treatment methods and cures continues. Treatment is often aimed at reducing symptoms and can encompass a range of ‘mainstream’ and ‘complementary’ methods, ranging through drugs, homoeopathy, behavioural therapies, acupuncture, diet changes and beyond.