It used to be called Yuppie Flu, but ME, Myalgic Encephalomyelitis (MECFS), is a severely debilitating condition that affects 250,000 people in the UK including children.

I was diagnosed with it when I was 20 years of age. 1 in 4 people are so severely affected that they are bed bound, unable to walk and must have a feeding tube. There are many misconceptions about it, some people think it is all in the head, others think people are just lazy. The World Health Organization 2016 classifies ME as a disease of the central nervous system although not classified as a distinct clinical entity it is indexed under G933. It is ME awareness month now.

Neil Riley chairman of the ME Association says: “To look at these people, men, women, children it is a tragedy and further serves to why is ME still not being investigated with the urgency it requires.”

What causes it?

It is often the result of an infection or illness such as glandular fever or stressful events.

Below are just some of the symptoms, but there are many more:

Post Exertional Malaise (The way symptoms worsen after activity)

This may happen the following day or later, the amount of activity that provokes symptoms is related to the severity and can be provoked by very minor exertions.

Muscle pain, muscular, rheumatic, neuropathic

Sleep disturbance hypersomnia and insomnia non-refreshing sleep pattern

Cognitive dysfunction This can affect the short-term memory concentration and attention span, sometimes called brain fog.

A general feeling of feeling unwellness, sore throat and flu-like symptoms.

Sensitivity to light and noise.

Diagnosis

This normally begins with the general practitioner who should take a detailed history of symptoms from the patient, it is important to take blood tests as often ME overlaps with other illness. Conditions such as thyroid function should be taken. Once all these tests have been completed ME is normally diagnosed by eliminating all other conditions often the GP will refer the patient to a specialist ME clinic.

Treatment

Under the Nice Guidelines, there are only two types of treatment

Graded exercise therapy, this is a systematic programme of physical activity or exercise that aims to support you to gradually increase activity or exercise.

Cognitive behaviour therapy, patients see a psychologist and examine their thought process.

There is a lot of controversy about graded exercise as it has proved detrimental to people and made their conditions worse.

Children with ME are often the subject of safeguarding proceedings, due to having time off school. It is vital that teachers play an essential role in offering the right support as some children may be disabled under the Equality Act of 2010 depending on how ME impacts on them.

Where to go for help

www.meassociation.org.uk

ME Connect is the helpline that you can call on 0344-576-5326

If you cannot get through there is an email service www.meassociation.org.uk/contact-meconnect

www.actionforme.org.uk