huge impact on the epidemiology of ME and CFS as well as estimations
of cost. Dr. Crawley states that one possible reason for the delay in
receiving specialist care is that people did not realize they were
ill. Given the severity of the criteria necessary to meet the newly
published International Consensus Criteria it seems highly improbable
that such patients would not realize they had contracted a disease.
This highlights the differences in the populations chosen depending on
the definition used.
Mental health issues such as depression and anxiety would be expected
in parents whose children have a severe stigmatized disease and for
which there is no cure and no effective treatments. The more pertinent
comparison would be parents of children with other sever, incurable
diseases rather than the general population. Parents of children with
ME has also been accused of having a rare psychiatric disorder called
M=FCnchausen syndrome by proxy - which is not listed in the DSM-IV.
Chronic fatigue syndrome could be costing UK economy =A3100m a year, study =
says
Mark Hunter
BMJ September 19 2011
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 =93fatigue related symptoms=94=9D (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 =A349.2m.
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 =A3102.2m.
This was likely to be =93just the thin edge of the wedge,=94=9D 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 =A3102m 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. =93Treatment 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
earnings.=94=9D
Several reasons were given for the delay in receiving specialist care.
=93There is a problem at every level,=94=9D said Dr Crawley. =93People don=
=92t
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.=94=9D
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
doi:10.1111/j.1365-2214.2011.01298.x).
On average each mother experienced a =A3247 loss in monthly income and a
=A3206 increase in expenditure directly attributable to their child=92s
illness. In addition, three quarters of the mothers showed signs of a
mental health problem, which compares with 20% in the general
population.
=93The study makes quite distressing reading,=94=9D said Dr Crawley. =93The
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.
=93This is a very devastating illness for both children and adults.=94=9D
Cite this as: BMJ 2011;343:d5905
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