1. Myalgic Encephalopathy (or Encephalomyelitis) (‘ME’) is also known as Chronic Fatigue Syndrome (‘CFS’) and sometimes, in its early stages, Post Viral Fatigue Syndrome (‘PVFS’).  There is debate about the most appropriate terminology so the composite term ME/CFS or CFS/ME is usually adopted.

2. ME/CFS is classified by the World Health Organisation ICD-10 as a neurological condition.

3. ME/CFS is a chronic disabling illness with many complex symptoms.  The cause is unknown.  As yet, there is no cure.

4. It is estimated that as many as 25,000 young people and children have ME/CFS.  That’s one in every secondary school in the UK.  The commonest age of onset is 13-15, but cases can occur as young as five-years-old.

5. ME/CFS has also been recorded as the most common cause of long term absence among school children: 51% compared to 23% cancer and leukaemia, 13% general medical or surgical conditions, 12% musculo-skeletal problems, 5% psychiatric disturbance and 5% virus infections. (Dowsett EG, Colby J. Long term Sickness Absence due to ME/CFS in UK School. An Epidemiological study with medical and Educational Implications. Journal of Chronic Fatigue Syndrome, 1997; 3 (2): 29:42)

6. The illness can last for years.  Symptoms vary from person-to-person.  They fluctuate, sometimes daily, and can be severely disabling. The most common are:

·         Fatigue: Utter exhaustion, often to the point of collapse.

·         Pain: Particularly headaches and intense muscle and joint pain, which is difficult to relieve with normal painkillers.  Skin sensations such as skin crawling and pains and needles may be felt.

·         Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue.  Difficulty concentrating, word-finding and thinking.  Collectively known as ‘brain fog’.

·         Other symptoms:

o        Body temperature disturbance

o        Dizziness

o        Vertigo

o        Postural hypotension

o        Sensitivity to light and noise

o        Sleep disturbance

o        Nausea, loss of appetite, gastrointestinal disturbance

o        Mood swings, panic, anxiety

o        Sensitivity to food, medication, alcohol, chemicals

·         Severe symptoms: 25% of patients are severely affected and in addition to the above, may experience blackouts, temporary partial paralysis, loss of speech, loss of swallowing function.

7. In total, in the UK ME/CFS affects around 240,000 men, women and children of all ages and social and ethnic backgrounds.  That is 1 in 250 people.

8. Up to 25% of people with ME/CFS are severely affected, either house or bedbound and unable to look after themselves.

9. The impact of ME/CFS is huge.  A study by the adult ME/CFS charity Action for ME indicated that the cost to the nation is approximately £6.4 billion per year.  The cost to the individual cannot be calculated.

10. Early diagnosis improves chances of recovery.  Although there is no specific diagnostic test for ME/CFS, it can be diagnosed by taking a full clinical history of the patient, identifying the typical symptom pattern and ruling out other conditions.

11. In 2002 the UK Government gave formal recognition of the illness and provided:

·         £8.5m to develop new NHS services in England

·         A national research strategy led by the Medical Research Council giving ME/CFS priority status

·         Referral to the National Institute for Health and Clinical Excellence (‘NICE’) to produce guidelines on diagnosis and management.