Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

6 Chronic Fatigue Syndrome KCE reports 88
symptoms: unrefreshing sleep, lengthy malaise after exertion, impairment of
concentration or short-term memory, sore throat, tender lymph nodes, multijoint pain,
and headaches. 12
CFS is identified by symptoms and disability and by excluding diseases that could explain
these symptoms. There are no confirmatory physical signs or characteristic laboratory
abnormalities. 13
Nevertheless, a high diversity of diagnostic methods is used, some of them being
considered as recommended (detailed patient history, physical examination, mental
status screening and targeted laboratory screening tests) whereas only limited evidence
is available for many other used diagnostic methods. 2 Many interventions have been
used for the treatment, management and rehabilitation of patients with CFS from
prolonged rests, to drug therapies and dietary supplements.
In Belgium, guidelines were proposed by the Conseil Supérieur de la Santé / Hoge
Gezondheidsraad in 2000 (Appendix 1). The Belgian guidelines were based on
consensus between the Belgian experts and were not subsequently validated. These
guidelines encompass diagnostic and therapeutic strategies and precise a grading
patients’ management from general practitioners to referral centres offering a
multidisciplinary approach. Five referral centres were created and financed to take CFS
patients in charge (four centres dedicated to adults and one to children). Agreements
between INAMI/RIZIV and these 5 centres were signed between April and October
2002 allocating an annual global budget of €1.6 millions for all centres. In 2006, a
descriptive report gave an evaluation of these centres functioning. 14
The agreements expire on September 30 th 2008. INAMI/RIZIV has to decide on future
financing rules for CFS patients care. To support its decision, INAMI/RIZIV asks for an
updated evidence based knowledge related for diagnosis, therapy and alternatives in
organisational modalities for CFS patients care. A cost analysis of recommendations is
also required. Some specific questions can possibly be treated while performing the
more general evaluation: the comparison of individual versus group therapy, the place of
family doctors and medical specialists in the diagnosis and treatment trajectory, and how
to guide efficiently the transfer from the rehabilitation stage to the chronic stage. This
part of work was devoted to KCE in collaboration with the Conseil Supérieur de la
Santé / Hoge Gezondheidsraad.
1.3 RESEARCH
The main objective of our study is to update the evidence based knowledge on diagnosis
and treatment of CFS as well as the organisational alternatives to take CFS patients in
charge. A following objective is to propose clinical guidelines to effectively diagnose and
treat patients affected by CFS and to evaluate cost-effectiveness of various options for
CFS management. The implementation of the final recommendations in Belgium should
also be considered.
1.3.1 Research questions
In order to inform the INAMI/RIZIV adequately, the following research questions were
formulated:
1. What are the existing definitions for CFS in adults and children?
2. What are the updated epidemiological data about CFS?
3. Does the evidence show that any particular diagnostic method or
combination of diagnostic methods is effective in confirming CFS?
4. Does the evidence show that any particular intervention or combination of
interventions is effective in treatment, management or rehabilitation of adults
and children with a diagnosis of CFS?
5. Does the evidence show that any organisational alternatives are effective to
take CFS patients in charge, including return to work /school?
• What is the evidence that in individuals with CFS, treatments are
effective in restoring the ability to work?
• What patient characteristics best define improvement in functioning or
positive outcomes in the CFS population? Where it occurs, how is