Chronic fatigue syndrome is an extremely debilitating illness affecting 1-2% of the population. New research conducted at the University of Bristol reveals the cost of chronic fatigue to the UK economy and highlights the factors associated with unemployment in patients.
The primary symptoms of chronic fatigue syndrome include fatigue and pain, with possible secondary symptoms of depression and anxiety. These symptoms can result in the patient being housebound for years.
The cause is not completely known. There is a genetic link, as it runs in families, but the illness is always triggered by something. In children it’s almost always triggered by a virus or infection, whereas adults are more susceptible after a bout of depression.
Now, two studies at the University of Bristol hope to explore the economic impact of the illness. The first estimates the loss of earnings in adults with CFS and the second reports the financial and psychological impacts on parents of children with CFS.
To explore how CFS leads to loss of earnings, the researchers surveyed 2170 patients who were accessing specialist CFS services. More than half of the group had stopped work as a result of the illness, leading to a loss of earnings of ₤102 million to the UK economy per year. The reason for giving up work was often due to physical disability – the patients couldn’t actually get to work. Depression and mood did not correlate with the point at which people left work, as previously thought.
A significant proportion of parents to children with CFS also had to stop work or reduce their earnings. Reduced earnings were compacted by increased childcare costs. Mothers were questioned about their situation and described five areas contributing to poor mental health: lack of understanding from others; marital tension; concern about their child’s distress; concern about the impact on siblings; and emotional distress causing physical symptoms.
An estimated ₤5 million per year is spent on CFS services, but the cost to the economy is clearly much higher. The problem is that the number of patients accessing the services is very small, and often begins much later than necessary.
Dr Esther Crawley, lead author and Consultant Senior Lecturer at the University of Bristol, explored why so few people receive specialist help. “There’s definitely a problem with awareness of this condition in the population… There’s then a problem at GP level because only about 52% of GPs feel confident in making a diagnosis and accessing services. There’s then another problem with getting access to treatment.” This is frustrating because up to 94% of children get very much or completely better with treatment, and 30-40% of adults make significant progress.
Dr Esther Crawley hopes the NHS and commissioners will respond to the study, “The more we can demonstrate the huge impact this illness has on patient’s lives, and the relatively low cost of treatment, then we’re hopeful that the NHS would realise that they really need to invest more in services.”
Click to hear Dr Esther Crawley discuss her work
It will be interesting and useful to get the actual results from the PACE trial that show how many of the 640 patients returned to full-time or part-time work, and were able to sustain it. At the moment all we really have from that is an analysis of subjective questionnaires: the only objective measurement, the 6-minute walk test, showed minimal or no improvement, and this was presented as a smaller secondary measure. I would hope that decisions will be based on objective data, and the subjective responses be used to help us understand what is happening. Sadly I have found that many optimistic claims are seldom backed up with hard data. Graham, Sun, 6th Nov 2011