This is being discussed in another thread but I thought I'd give it its own thread.
Original are only available in Dutch/Flemish and French
Original are only available in Dutch/Flemish and French
From: Dr. Bart Stouten
Subject: An insight into the situation in Belgium
Date: Sat, 27 Jan 2007
Recently a report evaluating the five CFS reference centres which have been
operating in Belgium since 2002 was published. The summary below contains
the main points raised in the report.
The report (written in Dutch) can be accessed at
Summary of the evaluation report (2002-2004) of the five CFS reference
centres in Belgium
* Despite a large amount of national and international research on CFS, a
lot remains unknown. There is no general consensus about the aetiology and
pathophysiology, required in order to diagnose, how to treat, and how to
name the condition.
* A working group from the Belgium High Health Council has identified the
medical and administrative problems for CFS patients.
To cope with the identified problems, RIVIZ was asked to make contracts
with reference centres for chronic fatigue syndrome. These centres had to
satisfy the following criteria:
* multidisciplinary teams and approach
* out-patient diagnosis
* formulate a therapeutic proposal for the general practitioner
* actively participate in scientific research and information
* active support for the health professionals
Because knowledge and participation in scientific CFS research is mostly
limited to universities, the recognition of CFS centres was limited to
medical teams associated with a university.
Five recognized centres:
* four for adults: UZ Leuven, UZ Antwerpen, UZ Gent, and UCL
* one for adolescents younger than 18 years: AZ VUB
The centres became operational between April 2002 and October 2002. The
maximum costs of the five centres together is approximately 1.7 million
euros per year. Chronic Fatigue Syndrome criteria of Fukuda et al. (1994)
Centres can only accept patients who are referred by their general
physician using a standardized intake form that was devised by the
* The first contact between the centre and the patient is a consult with a
general physician/internist. The aim is to quickly identify patients who do
not meet the criteria for a CFS diagnosis.
* Patients suspected to have CFS after this consult enter a phase where
they are assessed by a multidisciplinary team consisting of an internist,
psychiatrist, and rehabilitation physician.
* If the multidisciplinary assessment has made the diagnosis of CFS, then a
specific, individually-tailored interdisciplinary therapeutic programme
will be advised. The length is at most 12 months, and for adults it should
at least include cognitive behaviour therapy (CBT) as well as graded
exercise therapy (GET). [Ed note: CBT and GET were given in groups but
individual sessions were included where deemed helpful]
* For the adolescents, the required length of the complaints for a CFS
diagnosis was reduced from six months to six weeks [Ed note: the six week
limit also applies to fatigue]. With respect to fatigue, the restriction
that the chronic fatigue must have resulted in an absence from school for
at least two weeks in a period of six weeks was added. For adolescents, the
initial consult is performed by a paediatrician. The adolescent therapeutic
programme included GET as well as one of the following: school guidance,
system therapy, or CBT.
Evaluation measurements are taken at before the programme, immediately
after the programme, and 6 and 12 months after the programme.
The centres have a certain freedom in their policy. Sometimes, additional
criteria are applied, alongside the Fukuda CFS criteria to select patients
for a therapeutic programme. The length, intensity, contents and focus of
the therapeutic programmes can differ between centres. The centres have the
freedom to choose to offer out-patient or in-patient programmes. In
practice, there is only one centre (dealing with the adolescents) where
patients are hospitalized for ten days during the assessment phase
following the intake.
Methodological shortcomings as recognized in the report include:
1. Due to lack of objective measures to diagnose CFS and assessing the
course of disease, a lot of data on the functioning of patient was
collected using interviews and questionnaires.
2. Comparisons between centres was not always easy because each centre
had registered the parameters for their own patients, and sometimes this
led to compatibility issues between centres.
3. Some centres recorded that certain parameters for a large number of
patients were 'unknown,' even though the rehabilitation-contracts indicated
that assessment of these parameters was mandatory and included them in the
funding for the centre.
4. There are no control groups with patients that e.g. followed no
programme, a minimal programme, or an alternative programme.
5. There were large differences in the amount of registered data -
mostly related to the number of registered patients- per centre. In
particular there were not enough data (<10 patients) to perform a
statistical analysis for the centre that treated the adolescents.
Furthermore, the overall results are biased by the centre which treated the
Results for the adult centres
* Evaluation period: 1 April 2002 30 June 2005.
* 1505 patients entered the multidisciplinary assessment phase, 1421
patients completed this phase, 951 specific interdisciplinary
rehabilitation programmes were started
* Until 31 December 2004, 3042 patients were referred to the CFS centres.
Of those, (only) 54% had the mandatory consult with the internist, 37%
followed the multidisciplinary assessment phase, 26% entered the specific
interdisciplinary rehabilitation phase, and 20% completed the specific
interdisciplinary rehabilitation phase. Thus 63% of the referred patients
have never been diagnosed or evaluated according to the contracts.
* In 94% of the cases the internist judged that the referred patient may
have CFS; the CFS diagnosis was subsequently confirmed by the
multi-disciplinary team in 96% of those cases.
* In 80% of the cases where the diagnosis CFS was confirmed, the specific
interdisciplinary rehabilitation programme was recommended.
* 89% of the patients continued the rehabilitation programme until the
moment that the costs of rehabilitation were no longer covered. For no
patients the programme was stopped because the patient was not motivated
enough. Only in 2.8% of the cases the programme was ended by the patient.
* Complete recovery was never recorded as a reason for ending the
rehabilitation. Some centres believed that a complete cure for this chronic
condition is not possible. [Ed note: though not mentioned in the main text,
annex 3 reveals that other centres did: the centre in Gent estimated that
2-3% were completely cured after rehabilitation; the adolescent centre
reported that 2 out of 3 patients in a sample of 14 had completely
recovered after rehabilitation.]
* For 71% of the patients, the treatment team judged that there was
sufficient improvement to transfer the rest of the intervention back to
first and second line care.
* Most general practitioners (70%) have referred only a single patient. 96%
referred three or less patients. Only 1% referred five or more patients to
* The mean age of the patients that were referred to the centres was 40
years and 8 months; 41% were between 40 and 49 years old; 87% was female.
* 10% of the patients judged to have CFS worked fulltime, 14% worked
part-time, 76% did not have paid work. On average CFS patients worked 17.7%
(out of 38 hours) per week. When non-paid (e.g. household) work was taken
into account, CFS patients worked 57.2% per week. 26% of the patients had
income from professional work, 54% had a disability allowance.
* On average, patients had experienced chronic fatigue for 58 months. 38%
had chronic fatigue for more than five years. Most mentioned minor symptoms
including: muscle aching 95%, memory or concentration problems 94%, non
refreshing sleep 92%, post exertional malaise lasting longer than 24 hours
85%. Less frequent complaints were tender lymph nodes 38% and sore throat 54%.
* Maximum exercise test indicated that the reference values were on average
73.3% of the nominal values
* There was a large difference in the psychopathological conditions between
centres. 42% had a somatisation disorder/undifferentiated somatoform
disorder (varied from 1-89% between the centres); 13% depressive disorder
(0-33%); generalised anxiety disorder 6% (0-26%). The psychiatrists of the
centres thought that these differences were related to recording bias
and/or interpretation bias. The largest differences between centres were
the `undifferentiated somatoform disorder' (varied between 1-89%). The
symptom pattern is almost the same as CFS, but the former requires a
relation with identifiable social stressors (as a primary aetiological
factor). According to the psychiatrists, the large difference between
centres reflects the uncertainty in the aetiology of CFS.
Results of the treatment programme
* Analysis indicated statistically significant improvements in subjective
fatigue (measured with CIS20 subscale fatigue), vitality (SF36), memory and
concentration problems (CIS20-concentration), self-reported physical
activity (CIS20-activity, SF36), and quality of life (SF36 general) for the
group as a whole. Despite the improvement, the average scores remained low
as compared to a healthy population (e.g. quality of life score after
rehabilitation was 39.6 for CFS versus 78.8 for a healthy population).
* The effect of rehabilitation on the results of the exercise test were
limited and not statistically significant. Furthermore, there seemed to be
no relation between the subjectively experienced quality of life and the
cardio respiratory capacity. The maximum exercise was very demanding for
the patients as it could lead to severe malaise afterwards (abnormal
exercise intolerance is characteristic for CFS). Some believed that the
maximum exercise test was not in line with the therapeutic goal to avoid
maximum exertion. According to some centres, after rehabilitation, some
patients stopped the exercise test prematurely because they had learned
during rehabilitation to not exert themselves too much.
* Before rehabilitation, average amount of paid work was 18.3% (of 38
hours). Immediately after rehabilitation this was reduced to 14.9% (6%
worked more, 10% worked less), 6 months later it was 16.7%.
Scores at 0 months and at 6 months after rehabilitation as compared to
baseline (just before rehabilitation) [Ed note: this table is not complete,
but gives an indication of the numbers that are mentioned in the main text
of the report; the full tables are in annex 3 of the report]
CIS20-fatigue (0 months)* 61% 21%
(6 months)* 60% 25%
SF36 vitality (0 months)* 60% 25%
(6 months)* 56% 30%
CIS20 memory& (0 months)* 52% 32%
concentration (6 months)* 56% 29%
CIS20 physical (0 months)* 56% 24%
activity (6 months)* 56% 28%
SF36 phys. (0 months)* 54% 31%
functioning (6 months)* 57% 30%
SF36 quality of (0 months)* 48% 30%
life (6 months) 46% 34%
max exercise test
-watts (0 months) 38% 38%
-O2 (0 months) 58% 39%
-basismetabolism (0 months) 55% 44%
sub max exercise test
-watts (0 months) 43% 30%
-O2 (0 months) 56% 37%
-basismetabolism (0 months) 56% 39%
self-efficacy (0 months)* 57% 32%
* statistically significant improvement compared to baseline for the group
as a whole
Comparison to published studies
* Comparison of the results of the CFS reference centres with published
evidence based studies was difficult as the published studies often used
other measurements. Furthermore, scientific studies often used more
stringent criteria to select patients. Finally, sometimes the published
studies used other selection criteria than the CDC criteria that were
applied in the reference centres.
* Fulcher et al (BMJ 1997; 314:1647) compared 33 patients with CFS that
followed GET with a control group of 33 CFS patients who did
flexibility/relaxation exercises. The peak O2 consumption improved by 13%
in the group that followed GET (mean improved from 31.8 to 35.8). In the
CFS reference centres this is only 2% (from 22.3 to 22.8). The scores on
the 'functional functioning' scale (range 0-100) improved from 48.5 to 69
in the Fulcher et al study; in the reference centres the improvement was
less (41.8 to 47.6) though still statistically significant.
* Prins et al (Lancet 2001; 357:841-47) compared a group of 92 CFS patients
who followed CBT/GET with a group who were given guided support and a group
that had no intervention (natural course). For the CBT group the mean
CIS20-fatigue score before therapy was approximately 52 (range 8-56; higher
indicates more fatigue), after therapy approximately 40. For the CFS
centres the baseline score was 51.7. Although statistically significant,
the score was only improved to 47.0 after rehabilitation. The report
remarks that it should be noted that the Prins et al study also included
patients that did not satisfy the CDC criteria that they should have at
least 4 out of a list of 8 symptoms; patients who used medication or had a
conflict with the health insurance were also excluded.
* The results of the centres are not good as the results in the published
evidence based studies. The report asks if this depends on the way the
interventions are organised. The published studies used individual therapy,
the reference centres performed group therapy (on average 3 people per
group, though in some centres the groups consisted of 10-11 persons),
sometimes in combination with a limited number of individual sessions.
* Despite the limited effect of the treatment offered by the reference
centres, the patients experienced a global improvement of subjective
perception of their health (as measured with questionnaires for fatigue,
concentration, physical functioning, quality of life, psychological
functioning), without an accompanying improvement of their physical
capacities (as measured by the exercise test).
* In general the final levels of health and functioning were not as good as
in the normal population, which had consequences for the possibilities for
occupational rehabilitation. Furthermore, there is a large variance in the
results. There were also patients that did not improve or even got worse
after rehabilitation. The effect of the rehabilitation was decreased at the
follow-up phase, which shows the significance of the rehabilitation and
raises questions about the length.
[Ed note: I omitted the results for adolescents as only 59 patients were
referred to the centres until December 2004; of those, 37% were confirmed
to have CFS; less than 10 patients had data that could be used to evaluate
the rehabilitation, therefore no statistical analysis were performed in the
report. The general trend of the results of the <10 patients is that they
improved a lot, and after rehabilitation several measurements are within 1
standard deviation of the mean of the normal population; the report warns
that these results have to be interpreted with caution due to the small