RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year.

This is very frightening for a condition which at present does not have a formal test to diagnose it.

ME is an abbreviation of Myalgic Encephalomyelitis, variously referred to as Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

There are currently 250,000 sufferers in the UK alone, and an estimated 24 million worldwide. Most people’s symptoms begin in their 20s to 40s.

Children may report the beginnings of ME between 13-15 years of age. Women are three times as likely to be affected.

As the names suggest, the main complaints are overwhelming fatigue and muscular ache, not relieved by normal amounts of rest.

There may be multiple symptoms including headaches, sleep disturbance, an upset stomach as well as palpitations and altered mood. The range of severity is massive, with some able to hold down a job but spending the remainder of their time having to rest, through to those who become housebound and completely reliant on others as a result of the disease.

A viral infection is often implicated as triggering ME.

Similarly mental stress such as depression or bereavement has been blamed. However many cannot link a particular life event to the start of their condition.

There isn’t any approved test to diagnose ME at present, and as there are multiple causes of tiredness and muscular ache, the aim is to rule out conditions such as anaemia, an underactive thyroid or a connective tissue disorder such as Rheumatoid Arthritis, before considering ME or CFS.

Management aims to address the multiple aspects of ME, so that the sufferer is able to enjoy their life as much as possible.

Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are approved treatments and have been found to be very effective.

Both of these should be offered by professionals with a specific understanding of ME. Incorporating rest periods into the day also allows people to pace themselves and lessen the overwhelming fatigue.

This is different from sleeping during the day, which ideally should not be encouraged as it worsens night time insomnia.

Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.

A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.

Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms.