From the British Medical Journal, 19 September 2011 (story by Mark Hunter)
Chronic fatigue syndrome costs the UK economy millions of pounds in lost productivity each year, research announced on 14 September estimates.
Two studies presented at the British Science Festival in Bradford say that the syndrome, also called myalgic encephalopathy (ME), has a severe financial affect on affected people and their families.
In one study researchers from the University of Bristol found that over half of patients attending specialist ME services had stopped work because of “fatigue related symptoms” (BMC Health Services Research 2011;11:217, doi:10.1186/1472-6963-11-217). The cost in lost
productivity represented by the 2170 patients studied was £49.2m.
Extrapolating this figure to the nearly 4500 patients who access specialist ME services in the United Kingdom each year gave an annual cost to the UK economy of £102.2m.
This was likely to be “just the thin edge of the wedge,” said Simon Collin, research associate in epidemiology at the University of Bristol, as the figure did not include healthcare or welfare costs and applied only to those patients who were seen by specialists. Most of those with ME did not access specialist care, he pointed out.
Esther Crawley, lead author of the study and a consultant senior lecturer at the University of Bristol, said that the £102m cost of ME far exceeded the amount spent by the NHS on the condition.
She said it was particularly worrying that patients in the study had waited an average of three years between the first appearance of symptoms and receiving specialist care. The limit recommended by the National Institute for Health and Clinical Excellence is six months. “Treatment is effective, but people are still waiting three years before they access a specialist service. Most of these people had given up work for about 18 months before they were able to access the service, which represents a huge loss of
Several reasons were given for the delay in receiving specialist care. “There is a problem at every level,” said Dr Crawley. “People don’t recognise that they are ill, only 52% of GPs are confident of making the diagnosis, and there is a problem with the number of [specialist] services that people can access.”
Dr Crawley said it was not only patients but also family members who suffered hardship from the effects of ME. She presented the results of a recent study into the financial and psychological effects on mothers of children with ME (Child: Care, Health and Development
On average each mother experienced a £247 loss in monthly income and a £206 increase in expenditure directly attributable to their child’s illness. In addition, three quarters of the mothers showed signs of a mental health problem, which compares with 20% in the general
“The study makes quite distressing reading,” said Dr Crawley. “The mothers talk about a child with an illness that no one understands, that is quite stigmatising, and that can cause conflict within the family. There is a lack of access to services, and no one can tell them whether their child is going to get better or not.
“This is a very devastating illness for both children and adults.”
Cite this as: BMJ 2011;343:d5905