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From:
"Dr. Bart Stouten via Co-Cure Moderator" <[log in to unmask]>
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Date:
Sat, 27 Jan 2007 10:46:29 -0500
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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
http://riziv.fgov.be/care/nl/revalidatie/study-sfc-cvs/index.htm

Best wishes,
Bart Stouten


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) 
are used.


Centres can only accept patients who are referred by their general 
physician using a standardized intake form that was devised by the 
`Akkoordraad.'

* 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 
most participants.


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 centres.

* 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]


                              improved   deteriorated
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%
                   (6 months)

* 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.


Conclusion section

* 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 
sample size.]

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