Terminology
ME (Myalgic Encephalomyelitis) is the traditional British term favoured by those who have ME/CFS. Some consider this to be inaccurate and prefer the term Myalgic Encephalopathy, although the initials ME are still used by all.
CFS (Chronic Fatigue Syndrome) is sometimes used as an umbrella term for a variety of fatigue syndromes, and also as an alternative for ME.
PVFS (Post Viral Fatigue Syndrome) is a condition which specifically follows a virus and unlike the others, can be short lived.
What is ME/CFS?
A potentially disabling and chronic neurological condition which affects the brain at a physical, mental and emotional level. The immune and endocrine systems are also thought to be affected.
It affects all types of people at all ages and can interfere with all areas of life.
What causes ME/CFS?
There is no single identifiable cause although research has discovered the existence of dysfunctional genes. For many the trigger is a virus. Undetected bacterial infections, vaccinations, allergies or food sensitivities, exposure to chemicals, trauma and stress are among the other possible triggers. A recent article in the New Scientist gives details of some current research into ME/CFS.
What are the symptoms?
The condition is characterised by extreme fatigue, muscle pain and a severe ‘flu-like’ malaise. People can experience a wide range of symptoms, the main ones include digestive problems, difficulties with concentration and memory, loss of balance, sleep disorders, mood swings, visual disturbances and poor temperature control.
One of the most difficult aspects of the illness however is the tendency of symptoms to fluctuate markedly. Profound physical exhaustion and a general worsening of symptoms can be brought on by minimal activity, and is not necessarily improved by rest.
There can be periods of remission and relapse leaving sufferers and families alike, confused and frustrated.
A most useful presentation which describes ME/CFS well, and which can be shown to relatives and friends to help them to understand the condition better, can be found here.
How long does ME/CFS last?
Progress is difficult to predict. Some make a gradual return to full health, especially if they have had an early diagnosis and follow an appropriate management plan.
The majority will make variable progress with relapses and may reach 70-80% of previous level of health. A small number, roughly 25%, remain severely disabled.
What treatment is available?
As yet, there is no cure and no one treatment helps everyone, although those with ME/CFS have found that rest in the initial stages and energy management or pacing are the most helpful management approaches. It is important to find symptomatic relief (conventional or complementary) for sleep problems, pain, allergies, digestion problems etc. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are often recommended, but they help only a small number of those with ME/CFS, and GET especially can cause relapses, so needs to be treated with caution.