Explainer: What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME) and it is a disabling condition that has been associated with considerable controversy over the years.

Who does it affect?

Often thought of as a condition that affects adults CFS/ME is also known to affect children and adolescents with estimates of the incidence vary from 0.001-2%.

CFS/ME is more common in adolescents than in younger children and it is also more common in females than males.

What are the symptoms?

The persistent fatigue experienced by those who suffer from CFS/ME is often accompanied by a range of other symptoms that range from sleep disturbance, pain and headaches, memory and concentration difficulties, as well as neuroendocrine, immune and cardiovascular symptoms.

Many patients also report these symptoms are heightened after participating in effortful physical or mental activity. Some researchers and clinicians describe this worsening of symptoms as the hallmark of the condition.

CFS/ME is a considerable problem when it occurs in children and adolescents as it can disrupt education, social and family life at a particularly important and vulnerable time in development. This can have a big impact on academic, social, physical and emotional outcomes in the long term. As CFS/ME is a complicated condition, our research suggests that there can be a lengthy period of experiencing symptoms (over 12 months on average) before a formal diagnosis is made.

What causes chronic fatigue syndrome?

The cause of CFS/ME is unknown and there is little research evidence to guide effective treatment.

While there has been a vast amount of research in adults with CFS/ME, research dedicated to children and adolescents has been limited. Consequently, we know very little about the experiences of children and adolescents with CFS/ME so there are no internationally agreed upon diagnostic criteria for use in paediatrics, and there are also few evidence-based treatment options.

This means that accurate and validated measurement tools to evaluate treatments and interventions in children and adolescents with CFS/ME are very limited.

What are the gaps in research we are trying to fill?

A focus of our research at Murdoch Children's is to improve our measurement tools for paediatric CFS/ME so that we can better characterise and understand the condition. We aim to create an outcome measurement system that we can use to identify whether a range of treatments help to improve outcomes for children and adolescents with CFS/ME.

We are interested in evaluating outcomes both objectively and subjectively across a range of areas including fatigue, pain, sleep, cognitive function, mood, family impact, and quality of life.

We are also interested in finding out how commonly CFS/ME occurs in children and adolescents in Australia and also how paediatricians across Australia diagnosis and manage the condition as part of a 12-month national surveillance study with the Australian Paediatric Surveillance Unit that commenced in April 2015. We suspect that there may be large variations in the diagnosis and management approaches across Australia and our research is investigating this further.

Ultimately, we would like to help improve equity of care across Australia to ensure that all children and adolescents with CFS/ME have access to similar services.

What research is taking place now?

One of our more recent research endeavours (funded by ME Research UK) has been to investigate brain and cognitive functioning in adolescents with CFS/ME.

The frequent subjective reports of memory and concentration difficulties have rarely been investigated in younger people with CFS/ME. We are using a range of neuroimaging techniques to examine how the brain responds to mental exertion in adolescents with CFS/ME.

For this study, 25 adolescents with CFS/ME and 25 matched healthy controls will have baseline functional neuroimaging in an MRI scanner, followed by a period structured effortful thinking and learning activities similar to school work or homework, after which another brain scan will take place.

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