Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

82 Chronic Fatigue Syndrome KCE reports 88
Research on treatment for adolescents and children is much more limited than research
for adults. Only in 2007 (NICE guidelines), a clear proposal has been agreed on for time
duration of fatigue before a definitive diagnosis can be made (3 months). No scientific
validation is underpinning yet this proposal. It is generally agreed on that prognosis in
young persons is much better.
More research is necessary, before conclusions on structure and organisation of care
for children and adolescents can be made.
6.3 OTHER BELGIAN DATA
As already discussed in the introduction to this chapter, data on Belgian CFS patients
not diagnosed or treated in the reference centres are difficult to obtain. Nevertheless,
some additional information could be obtained.
6.3.1 Belgian CFS patients receiving a support under the Disability Scheme
Data were obtained from the Federal Service for Disability Allowances, part of the
RIZIV/INAMI l .
According to the most recent data available (June, 30 th , 2007), 237 999 Belgians were
qualifying for a Disability Allowance. Of these persons, 2 171 persons (0.9%) were
registered as CFS patients (506 men, 1 665 women). It should be taken into account
that this is only estimation, and deducted from the Disability appliances, since no ICD-9-
CM code for CFS exists.
6.3.2 RIZIV/INAMI expenses for the reference centres
On May 20 th 2008, the RIZIV/INAMI provided the booked expenses and maximum
budgets foreseen per year (total for all reference centres in Euro). As shown in Table
12, so far the maximum yearly budget has not been reached yet. Remarkable is the fact
that the expenses increase especially for the “bilans” (initial multidisciplinary evaluation).
According to the KCE experts (see colophon) this might be due to the fact that the
number of referrals increased, especially since 2005-2006. Since waiting lists were
growing, the Akkoordraad (see Introduction) asked the reference centres to focus
especially on confirming/rejecting the diagnosis by the initial evaluations. The reference
centres probably also could yet rely on the network they had built up to refer patients
back to their home environment for rehabilitation. Also, the experts had the impression
that more persons were referred not for rehabilitation, but rather for diagnostic
confirmation to receive reimbursements, to prove their diagnosis in a lawsuit, etc.
l Vanwynsberghe Lutgarde, M.D., inspector of the Federal Service for Disability Allowances; dd. March,
27 th, 2008.