What is ME?

Myalgic Encephalopathy/
Chronic Fatigue Syndrome

ME/CFS is an illness which leaves sufferers exhausted after minimal activity and is characterised by many different symptoms. It usually follows a viral illness (such as glandular fever) and may persist long term.
ME/CFS is starting to come under autoimmune-neuroinflammatory with the latest research.

Changes in the immune system in response to the initial infection cause the typical flu-like symptoms such as fever, sore throat, swollen glands, muscle and joint pains, mental sluggishness, sleep disturbance and extreme fatigue.

These symptoms then tend to come and go over a period of time, and even between relapses the person may still feel very tired and unwell. Less commonly the illness can occur after non-viral infections, vaccinations, chemical poisoning and severe physical trauma such as accidents or operations. Sometimes there is no apparent cause.

ME/CFS has been known by many names such as Royal Free Disease, Chronic Fatigue Immune Disorder, Tapanui flu and Yuppie flu – all reflecting the earlier difficulties experienced in identifying and diagnosing the illness. An ideal name for the illness has not been agreed upon but ME (Myalgic Encephalopathy) and CFS (Chronic Fatigue Syndrome) are currently the most widely used.

In ME “Myalgic” refers to muscle pain and “Encephalopathy” to brain symptoms resulting from changes in the brain. A current compromise and one that the Chief Medical Officer in the United Kingdom has used is to condense the two together as ME/CFS.

Who is at risk of getting ME/CFS?

About 2-4 people per thousand are affected by this illness worldwide. It strikes all ages and socio-economic groups. Research indicates that at least 8 sub-groups of genes are activated in association with the illness, indicating a genetic vulnerability.

How is ME/CFS diagnosed?

Research is constantly progressing, adding to our understanding of the underlying causes of the syndrome. Changes have been shown in the immune, neurological and endocrine systems and it is thought that a complex interaction occurring within these systems results in the illness.

There is no specific diagnostic test, although throughout the world it is now accepted as a serious physical illness which may have a severe impact on the life of the sufferer. Diagnosis is made by a thorough history and examination, preferably by a doctor experienced in this kind of disorder.

Other serious illnesses have to be ruled out, which may mean that the patient is subjected to multiple tests. The diagnosis cannot be made until the symptoms have persisted for a period of at least six months.

Treatment and Symptoms
What kind of treatment is available?
At this time there is no specific “curative” treatment for this illness. The current aim of treatment is to look at lifestyle changes and to relieve specific symptoms, thus enhancing a person’s chance of making a recovery. Lifestyle changes include stress management, learning to ‘pace’ oneself, maintaining a balance between rest and gentle exercise, eating sensibly and attending to sleep difficulties.

Because the symptoms are so many and varied, treatment strategies can be different, and what suits one person may not be ideal for the next. Many physical therapies may be useful for pain, such as warmth, physiotherapy, massage and relaxation, and there are a number of useful pain relieving medications available. Most people with this illness find they can tolerate only small amounts of medication initially. Other medication is available to treat specific symptoms such as sleep disorder, depression, nausea and dizziness.

Long-term outlook

Many people recover from this illness. The sooner it is diagnosed the better, as it appears that the early commencement of effective management regimes can lead to a better outcome.

About 80% of people will return to a relatively normal life within five years but will need to continue with careful self-management. A small number are severely ill and may remain so for a long time.

Other concerns

Professional help may be needed to cope with the psychological impact of a serious illness. Dealing with financial, relationship, educational and work-related issues is also important, and those caring for a person with ME/CFS should not be neglected.

The diagnosis may be made in even very young children, who face extra difficulties such as coping with school and maintaining social contacts. Those with this illness need to live from day to day as plans are often thwarted. They need support and recognition from those around them such as family and friends, health professionals, government agencies, employers, etc.

There are a number of Social Welfare benefits, educational options and support systems available through the appropriate agencies, and contact with others with the illness through local support groups may provide understanding and companionship.

ME/CFS is not chronic tiredness that we all feel from time to time. People with ME find their daily activity significantly reduced and show some or all of the following symptoms:
•    Extreme exhaustion
•    Post-exercise fatigue and malaise
•    Temperature irregularities
•    Headache of a new type
•    Muscle, skin and joint pain
•    Gastrointestinal symptoms
•    Genitourinary symptoms
•    Drug and alcohol intolerance
•    Loss of concentration, memory loss
•    Visual problems
•    Depression, emotional instability
•    Orthostatic intolerance
•    Heart rhythm irregularities
•    Sore throat and swollen glands
•    Non-refreshing sleep
Symptoms are irregular and vary in severity. Relapses after long periods of improvement are common. Although there is no total cure known at present, research is providing promising results.