Everybody feels tired from time to time, but people with myalgic encephalomyelitis often find fatigue so debilitating they are unable to carry on with a normal life. Vicki Piggott, a specialist physiotherapist in fatigue management, explains how one North-East clinic is helping children cope with ME

IMAGINE having the worst hangover, with a bad dose of flu and no sleep for 24 hours– then imagine living with that feeling every day; this is unfortunately the reality for people diagnosed with Chronic Fatigue Syndrome/ME.

Chronic Fatigue Syndrome, Myalgic Encephalomyelitis or CFS/ME, is a condition causing long-term illness and significant disability and is thought to affect one-in-every-1000 people in the UK. Unfortunately CFS/ME in children is relatively common and it has been recorded as one of the most common causes of long-term absence from school. The condition most commonly affects children between 10 and 18, however it is also seen in children age 4 and upward.

Although the condition is known for causing chronic tiredness, in reality the symptom of fatigue is only the tip of the iceberg. The lesser known symptoms of this condition include joint and muscle pains, recurrent sore throats, headaches, heart palpitations, light-headedness, memory and concentration problems, sensitivity to noise and light, disturbed sleep patterns, nausea, irritable bowel symptoms and problems regulating body temperature.

In 2005 the Department of Health invested money into setting up regional adult CFS/ME services and in turn specialist children’s services were also established. Unfortunately, in recent years funding for children’s CFS/ME services has been dramatically reduced and in some regions they have been decommissioned completely. This has left many families without the vital support network that allows them to cope with the complexities of looking after a child with a chronic illness, particularly whilst navigating their way through the health and education systems. It has also meant that families of children newly diagnosed with this condition have no access to health professionals who specialise in CFS/ME and who can educate them about the condition and the practicalities of how to manage it on a daily basis.

For children and young people diagnosed with CFS/ME the consequences of living with this illness can be severe. Many children end up missing large amounts of schooling, often not obtaining the qualifications they were predicted, and once they are forced to step out of the educational setting they can lose contact with friends often becoming very isolated. Trying to manage a regular timetable of lessons alongside the homework required, as well as coping with the social pressures of childhood and adolescence, is often too much to cope with when feeling so unwell. Children can show the very best of themselves to the outside world but once they have expended this vital energy they can struggle to get out of bed for the next few days, overwhelmed with pain and exhaustion. It is so easy to forget the huge amounts of energy we must invest in making and maintaining friendships, dealing with fallouts and challenging social situations and coping with the emotional issues we face while growing up.

The Castle Dene Fatigue Clinic is a private therapy service based in County Durham specialising in the treatment and management of both adults and children suffering form Chronic Fatigue Syndrome CFS/ME, Fibromyalgia and persistent fatigue related to other medical conditions. With more than 12 years experience working in the specialist CFS/ME services for adults and children we have a vast amount of knowledge about this condition and its management.

Appointments are carried out in your home, with evening and weekend appointments available, and initial assessments are completed to find out what symptoms are present and how they affect you on a daily basis. W

e look at current levels of function and spend time explaining the condition, the factors which contribute to the symptoms flaring up and the physiology behind why these symptoms occur. We focus on how to manage the condition day to day, looking at pain management advice and the management of altered sleep patterns and insomnia. When working with young people in education we are able to look at school timetables and liaise with schools and colleges to ensure the curriculum can be altered to suit the needs of the young person.

We can provide letters to schools requesting special measures in public examination; with options for extended time, rest breaks and individual exam rooms available. As with any health problem, if we understand what our body is doing and why symptoms are occurring, it is easier to cope with the condition we are faced with; so much anxiety can come from not understanding what is happening to our body.

Our overall aim is to work with you to make you the expert in your condition, giving you the tools to manage your symptoms and improve your quality of life.

You can find out more about what we offer via our website www.castledenefatigueclinic.co.uk or you can email us for more information at www.castledenephysiotherapy@hotmail.com