(2006) Audit of Belgian CBT/GET rehab clinics (large sample)

Dolphin

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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

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701D&L=CO-CURE&P=R3379&I=-3

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
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.]
 

Dolphin

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Translation of some more info

Translation of some more info
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161&I=-3

As some people don't speak either Dutch or French, and other people
wouldn't read it all, I thought I highlight a few interesting bits from:
"Evaluatierapport - Referentiecentra voor het Chronisch
vermoeidheidssyndroom (CVS)"/
"Rapport d’valuation concernant les centres de rfrence pour le
syndrome de fatigue chronique"

(ref:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701D&L=CO-CURE&P=R3379&I=-
3&m=16601 or http://tinyurl.com/2uqoqs
And

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701E&L=CO-CURE&P=R427&I=-3
&m=16601 or http://tinyurl.com/366v5l . Tom K.]



"Conformment la convention, l'amlioration significative du
fonctionnement socioprofessionnel des patients est l'un des
objectifs de la rducation. Les donnes montrent nanmoins que le
pourcentage moyen d'activits professionnelles rmunres diminue
encore jusqu' 14,9% la fin de la rducation. Six pour cents des
patients travaillent plus qu'avant la rducation, 10% travaillent
moins. Pour 84% des patients, le pourcentage d'activits
professionnelles rmunres ne change pas."

[Here's my quick attempt at translating this for anyone interested:

"In accordance with convention, significant improvement in the
socioprofessionnel functioning of the patients is one of the
objectives of the re-education/re-training. Nevertheless the data
shows that the average percentage of paid work decreased further to
just 14.9% at the end of the re-education/re-training.
Six per cent of the patients were working more than before the re-
education/re-training, 10% were working less. For 84% of the
patients the percentage of paid work didn't change."]

This could be useful data if there was pressure on anybody, either
from a private insurance company or State Social Welfare/Security
departments, to do one of these
courses anywhere.

Tables 69-71 have lots of interesting data on this

["Indemnits CPAS" -"income of integration or equivalent assistance
like foreigner"/"minimum of equivalent assistance or means of
existence like foreigner" - maybe something like what is given to
asylum seekers?]


[The percentages are the fraction of a working week (set at 38
hours) spent in paid employment - see table 69]


----------------------------------------------------
For those that don't understand it, I thought I would do a rough
translation of table 70.
I think it could be very useful if ever faced with situations where it is
claimed GET and CBT problems can be
(and/or should be) used to get people/help people back to work.

"Tableau 70. Reprise de travail aprs la rducation en fonction de la
dure depuis que les patients n’ont plus travaill avant le dbut du
programme de rducation de bilan"
"Table 70. Return to work after the functional rehabilitation (programme)
with regard to the length of time the patients had not worked before the
start of the assessment for the rehabilitation programme"

"Dure depuis quand les patients non plus effectu des activits
professionnelles salaries au moment du programme de rducation de
bilan"
"The length of time that the patients had not done paid work, at the time
of the assessment for the rehabilitation programme"


"Pourcentage de patients n’effectuant aucune activit professionnelle
salarie au moment du programme de rducation de bilan mais bien …"
"Percentage of the patients who were not doing anypaid work at the time of
the assessment for the rehabilitation programme but were"


… la fin de la rducation
"at the end of the rehabilitation (programme)"


… 6 mois aprs la fin de la rducation
"six months after the end of the rehabilitation (programme)"


… 12 mois aprs la fin de la rducation
"six months after the end of the rehabilitation (programme)"


Nombre de patients
"Number of patients"

≥ 2 ans et < 5 ans
" greater than or are equal to two years and less than five years"

Patients n’ayant jamais travaill avant le programme de rducation de
bilan
"patients who had never worked before the assessment for the
rehabilitation programme"

82% des 22 patients reprenant le travail le font temps partiel.
"82% of the 22 patients who returned to work were doing it part-time (i.e.
were working part-time)

[Tom: That means that of the 266 people, four were working full-time one year
after the end of the programme!].

-----------------------------------------

And this was a situation where one of the aims was to try to get the
people back to work!

e.g. Annex 3:
"Tableau. Efforts de rinsertion professionnelle."
"Things done to try to bring about reintegration into the workforce"

------------------------------------------
There is no control group but it seems likely that if they followed
266 people who had suffered from CFS for various periods (incl. some
who had been out of work less than six months) and who were well
enough that they were able to complete a rehabilitation programme,
that at least one and possibly more than four would be back in work
full-time after around 19 months (on average) (the median length of
time being discussed here) without having to do one of these
programmes!

----------------------------------------------------
Centre using "Michael Sharpe's model"
For one of the centres, UCL - Mont Godinne, Annexe 3 says:

"Psychothrapie

Le traitement se base entre autres sur le modle de Michael Sharpe."
[The treatment is based on, amongst others, Michael Sharpe's model


For this centre, the figures are a little worse than the average
figures!:

Percentage of a week in paid employment (based on a 38 hour week):
Average for all the centres: 18.3% before the programme; 14.9% at
the end of the programme.

For UCL - Mont Godinne: 32.7% before the programme; 23.0% at the end
of the programme.

-------------------
Overall the percentages for (at the end of the programme):
Working more; working the same; working less; are:
6% 84% 10%

For UCL - Mont Godinne (where they use Michael Sharpe's model)
5% 77% 18%

------------------

Tom (Kindlon)
 

Dolphin

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An official summary in English of the results from the Belgian "Reference Clinics"

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810B&L=CO-CURE&P=R3233&I=-3&m=18356

An official summary in English of the results from the Belgian "Reference Clinics" for CFS (which used CBT and GET)


(May be re-posted)

People including myself have tried to summarise in English some of the
data from the following report:


(Reference given in both the French- and Dutch-language documents):
Conseil d'accord. Rapport d’valuation (2002-2004) portant sur l’excution
des conventions
de rducation entre le Comit de l'assurance soins de sant
(INAMI) et les Centres de rfrence pour le Syndrome de fatigue chronique
(SFC). 2006. Available
from:
http://www.inami.fgov.be/care/fr/doctors/specific-information/sfc-cvs/sfc-
cvs04.htm


As one can see, this was a report on a major venture - more CFS patients
did CBT and GET at these centres than for example all the patients in the
PACE Trial (or more than twice the number doing CBT or GET in the PACE
trials (as it's a four-armed trial)).


It can be found at:
http://www.kce.fgov.be/index_nl.aspx?SGREF=5260&CREF=11643
OR
http://www.kce.fgov.be/index_fr.aspx?SGREF=3228&CREF=11646



For simplicity, I've included all of Chapter 6 (Belgian Data) except the
footnotes.


For anyone interested in CBT and GET for CFS, it includes some interesting
Data - I have highlighted some quotes at the top as a lot of people
probably won't read the full piece.


I've added one footnote pointing out that "In accordance with the
convention, significant improvement in the
socioprofessional functioning of the patients is one of the objectives of
the re-education/re-training." (this summary tries to claim this was not
the case after they got "bad" results).


Tom Kindlon


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Selected quotes (chosen by Tom) that summarise the clinics and the
findings:

"Of the patients with confirmed diagnosis of CFS (N=862), 79% were
considered
to becandidates for an interdisciplinary rehabilitation program in the
reference
centre."


"The interdisciplinary treatments at the reference centres that were
finished
before January 1st , 2005, comprised on average per patient 41 to 62 hours
of
rehabilitation,
spread over 6 to 8 months (and in one centre 12 months), depending on the
reference
centre. One session lasted 1 hour to 1 hour . The largest part of the
rehabilitation
(50%) was provided by physiotherapists; 37% was provided by psychologists.
Psychiatrists and rehabilitation specialists provided respectively 3.6%
and 4.2% of the rehabilitation, and social workers 3.2%."


The systematic outcome registration in the four centres revealed that the
main
complaint of the patients, their fatigue, had improved significantly at
the
end of the
therapy and 6 months later.

Results concerning the patients’ quality of life were conflicting: for one
group of patients
there was a significant improvement as compared to the start of the
therapy,
for
another group of patients this could not be confirmed. However, for all
patients the
average quality of life was still below the level of healthy adults.

At the beginning of the rehabilitation, many patients presented with
psychological
problems or psychiatric co-morbidities (e.g. depressive feelings, somatic
complaints,
anxiety etc). Their average outcome fell outside the range of healthy
adults, but did not
reach the level of an average outpatient psychiatric population. Although
at
the finish of
the treatment they were improved, their results on psychological
evaluation
were still
outside the normal range.

Physical capacity (maximal or sub-maximal according to the patient’s
possibilities) did
not change between start and end of the treatment.

Employment status decreased at the end of the therapy, from an average of
18.3% of a
38h- working week, to 14.9%. However, it should be noticed that this was
not
one of
the preset goals of the interdisciplinary treatment, and that no specific
occupational
rehabilitation was foreseen. The percentage of patients living from a
sickness allowance
increased slightly from 54 to 57%."

"Treatment was ended in only 2.8% of the cases by the patient himself, so
the
motivation
of the patients for the treatment seemed to be high. In 71% the team
considered the
patient to have reached his maximal capacity — although no patient had
been
cured."




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


6 BELGIAN DATA


6.1 INTRODUCTION

In 2000, a Working Group of the Superior Health Council formulated
problems existing
in the care of CFS-patients in Belgiumg. Four main domains were mentioned:

• Costs for patients as well as society were important;

• CFS patients were threatened by an inconstant social situation;

• CFS patients suffered by the lack of recognition of the medical world,
probably due to a lack of consensus on the disorder;

• Working conditions were often maladjusted to the reduced capacities
of CFS patients.

Following this report, the Minister of Social Affairs, F. Vandenbroucke,
asked the
RIZIV/INAMI to establish rehabilitation agreements for CFS reference
centres. From
April 1st 2002 on, four reference centres for adults and one for children
were started
up.

In 2006, an evaluation report describing the activities and patient
outcome of the
reference centres was published167 by the RIZIV/INAMI Akkoordraadh. This
report will
be summarized in the section 6.2, and will be the main reference for the
Belgian data on
CFS.

The reason for this is that other forms of care for these patients are
difficult to trace:
medical diagnosis in ambulatory care (e.g. consultation of general
practitioner or
medical specialist; ambulatory physiotherapy) is not routinely registered
in Belgium; and
hospital registration is according to the ICD-9-CM, which does not yet
include
“Chronic Fatigue Syndrome” as a medical diagnosis. Psychotherapy in
private practice is
not reimbursed by the national health insurance, and even more difficult
to trace;
whereas psychological support in “Centra voor Geestelijke Gezondheidszorg/
Services
de Sant Mentale” is not organised by the Federal State but by the
Flemish/Walloon/Brussels Region.

However, additional information was obtained from the RIZIV/INAMI (Dienst
voor
Uitkeringen) on the number of Belgian CFS patients that currently receive
a support
under the Disability Scheme, and on the budgets allowed to the reference
centres by
the RIZIV/INAMI (see section 6.3.).


6.2 SUMMARY OF THE RIZIV/INAMI REPORT (2006)167

6.2.1 Reference centres: tasks and financing

In the starting phase of the reference centres, a link to University
hospitals where
knowledge on the CFS syndrome was more readily available and research
could be
performed, was preferred.

The main tasks of the five CFS reference centres (four for adults and one
for children)
started up from April 1st 2002 on, are (RIZIV/INAMI report p 3– p 61):

a. to give advice on diagnosis of possible CFS patients which are too
complex to be diagnosed by the first and/or second line services;

b. to provide time limited therapy for CFS patients that are difficult to
treat
by the first and/or second line services, or in case it is not clear how
the
patient should be treated. The therapy should be evidence-based, i.e. CBT
and GET are to be included. Patients should be referred back as soon as
possible;

c. to offer interdisciplinary services, providing a coordinated and
patientcentred
approach; the diagnostic services should be on an ambulatory
basis;

d. to inform, support and teach first and second line services on CFS, so
as
to make future organisation of most of the care for CFS patients on the
first and second level possible under coordination of the patient’s
general
practitioner. In this way, affordable services should be offered to CFS
patients, as close to their living places as possible;

e. to advise the RIZIV/INAMI on how to organise this care in an affordable
way in the first and second level in the future.

Financing of the system includes four “forfaits” (lump sum):

• a lump sum for the initial multidisciplinary evaluation of the centre;

• a monthly lump sum for the interdisciplinary rehabilitation; which can
be paid maximum 6 times during a time period of maximum 12
months;

• a lump sum for a general practitioner (GP) attending his patient’s
rehabilitation session (“GP participation session”)

• a lump sum for a team member attending a meeting of GPs organised
by one of the patient’s GP (“team member extra muros participation
session”)

For each of the reference centres, a “normal” patient capacity is agreed
on; centres can
go beyond their normal capacity but at a reduced tariff. The normal yearly
capacity for
the four adult centres together is 407 full rehabilitation programs (407
times six
monthly lump sums for interdisciplinary rehabilitation); it includes 18.25
FTE (full time
equivalents). For the children’s centre, the normal yearly capacity is 36
full rehabilitation
programs, including 1.75 FTE.

6.2.2 Reference centres: general organisation

Patients should be referred by a medical doctor, a standard referral form
should be
filled out including demographic, medical and (psycho-)social information,
and
information on the professional situation of the patient; results of
diagnostic evaluations
should be included.

A first outpatient consultation by a medical specialist in internal
medicine (for the
children <18 years: paediatrician) should avoid that patients who clearly
don’t fulfil the
CFS diagnostic criteria (CDC criteria, Fukuda 1994; adapted for
children17), remain
unnecessary on a waiting list. Next, a multidisciplinary evaluation by a
psychiatrist,
specialist in internal medicine (for additional diagnostic evaluation if
necessary) and a
rehabilitation specialist as well as other team members take place. For
the children, this
evaluation is performed by a child psychiatrist, a paediatrician, a master
in educational
sciences and a physiotherapist. A definite diagnosis is worked out, and
psycho-diagnostic
data using a semi-structured interview and questionnaires are gathered.
Maximal or submaximal
physical capacity, according to the patient’s possibilities, is measured.

Based on this multidisciplinary evaluation, a therapeutic program is
proposed to the
patient and communicated to his GP. This program can take place at the
first or second
care level, or at the reference centre itself.

In the last case, re-evaluation takes place at the end of the program, and
the reason why
the program is finished is noted. Re-evaluation is repeated at 6 and 12
months’ followup.
Since evaluation of the centres’ activities and of the patients’ outcome
was estimated to
be important during the starting years of the reference centres,
especially because
knowledge on organisation of care for CFS largely was lacking, a general
registration
system167 was agreed on, and administrative support for the registration
was provided
to the centres.


6.2.3 Reference centres for adults: evaluation of results.

The four reference centres were evaluated for the period of April 1st,
2002 till
December 31st, 2004.

After an initial starting phase, all three Dutch speaking reference
centres reached their
normal yearly capacity, and even their maximal capacity, so that long
waiting lists were
created. The French speaking reference centre reached only 50% of its
normal capacity.

For all 4 centres, only rarely services were not provided ambulatory,
although inpatient
treatment is possible according to the RIZIV/INAMI agreement.


6.2.3.1 Adults: Diagnostic phase

Between April 1st, 2002 and December 31st, 2004, 1 655 patients entered
the reference
centres for the first outpatient consultation. After this first
consultation, 94% of the
patients seen were considered to be a possible CFS-patienti. In 96% of
these patients
(N=1 087), the diagnosis was confirmed after the multidisciplinary
evaluation. According
to the RIZIV/INAMI report, an explanation for this high number could be
that 64% of
the referred patients indicated that they had already been treated before
for CFS.

Another explanation could be that GPs and second-line medical specialists
are highly
competent in making the diagnosis of CFS. However, it should be noted that
84% of the
referring medical doctors only referred one patient.j The average age of
the patients
who were diagnosed with CFS, was 40 years 8 months; 41% of the patients
were
between 40-49 years old. The average duration of the fatigue was 4 years
10 months,
and 38% of the patients were already fatigued for more than 5 years. About
87% were
female, and 10% of the CFS patients had at the time of initial evaluation
a full-time and
14% a part-time job. About 26% stated to have some income out of own
professional
activities; 39% had a partner with an income, and 54% had a sickness
allowance.

The diagnostic phase in the reference centres (first outpatient
consultation followed by
multidisciplinary evaluation) took a long time: 4 to 5 months between
first consultation
and start of the rehabilitation treatment. It should be mentioned, that in
3 of the 4 adult
centres, the first outpatient consultation already comprised an advice by
a medical
specialist in internal medicine as well as a psychiatrist. This seems an
overlap with the
next phase of the evaluation, namely the multidisciplinary team “bilan”.

Of the patients with confirmed diagnosis of CFS (N=862), 79% were
considered to be
candidates for an interdisciplinary rehabilitation program in the
reference centre. For
30%, advice and education of the patient and/or his caregivers including
first- and
second level professionals, was proposed (additionally). At least 25%
received a special
referral to the physiotherapist, for 60 sessions at a reduced tariff
(“F-list”); this could be
after the interdisciplinary treatment was finished. It should be noted
that all centres
organised general educational sessions for family and relatives, although
for this activity
no reimbursement had been foreseen.


6.2.3.2 Interdisciplinary treatment of adults: characteristics and outcome

The interdisciplinary treatments at the reference centres that were
finished before
January 1st , 2005, comprised on average per patient 41 to 62 hours of
rehabilitation,
spread over 6 to 8 months (and in one centre 12 months), depending on the
reference
centre. One session lasted 1 hour to 1 hour . The largest part of the
rehabilitation
(50%) was provided by physiotherapists; 37% was provided by psychologists.

Psychiatrists and rehabilitation specialists provided respectively 3.6%
and 4.2% of the
rehabilitation, and social workers 3.2%. For each 30 days of
rehabilitation provided, an
average of 6.4 group interventions (83%) were provided, and 1.2 individual
interventions
(17%).

For all 4 centres together, only twice had a general practitioner attended
a
rehabilitation session of his patient and only once had a lump sum be paid
for a team
member attending an extra muros GP conference (however, some teaching
activities
were organised without claiming the lump sum).

89% of the rehabilitation interventions in the centres were stopped
because of “end of
the RIZIV/INAMI reimbursement period”; for 71% of the patients the team
estimated
that the maximal result for the patient had been reached, although no
patient was
considered to be totally cured. Only 2.8% of the treatments were stopped
by the
patient, who generally speaking seemed very motivated to follow the
therapy.

Subjective complaints, quality of life, psychological co-morbidities,
physical capacity and
employment status were evaluated extensively at the beginning and at the
end of the
treatment period, and after respectively 6 and 12 months follow-up. For
the full list of
outcome instruments, and for the statistical tests used, see the
RIZIV/INAMI document.

Although drugs used by the patients in the four centres had been
registered, only
general information on this part of the therapy is given in the evaluation
report.
The systematic outcome registration in the four centres revealed that the
main
complaint of the patients, their fatigue, had improved significantly at
the end of the
therapy and 6 months later.

Results concerning the patients’ quality of life were conflicting: for one
group of patients
there was a significant improvement as compared to the start of the
therapy, for
another group of patients this could not be confirmed. However, for all
patients the
average quality of life was still below the level of healthy adults.

At the beginning of the rehabilitation, many patients presented with
psychological
problems or psychiatric co-morbidities (e.g. depressive feelings, somatic
complaints,
anxiety etc). Their average outcome fell outside the range of healthy
adults, but did not
reach the level of an average outpatient psychiatric population. Although
at the finish of
the treatment they were improved, their results on psychological
evaluation were still
outside the normal range.

Physical capacity (maximal or sub-maximal according to the patient’s
possibilities) did
not change between start and end of the treatment.

Employment status decreased at the end of the therapy, from an average of
18.3% of a
38h- working week, to 14.9%. However, it should be noticed that this was
not one of
the preset goals of the interdisciplinary treatment, and that no specific
occupational
rehabilitation was foreseen. The percentage of patients living from a
sickness allowance
increased slightly from 54 to 57%.


6.2.4 Reference centre for children: evaluation of results

The reference centre for children was also evaluated for the period of
April 1st, 2002 till
December 31st, 2004.

Although it had been estimated that in Belgium about 8 000 children would
suffer for
CFS, the centre never reached its normal capacity (36 full rehabilitation
programs
yearly); it reached only 40% in 2004.

100% of all patients seen in the first mono-disciplinary outpatient
consultation, were
estimated to meet criteria for “possible” CFS syndrome (N=56). After
thorough
diagnostic evaluation, only 37%, or 19 patients, got a definitive
diagnostic label of CFS,
because of uncertainty about the diagnostic definition for children and
because the team
tried to avoid this “label”, for which no aetiology or definite cure
exists. Fourteen of
these patients started interdisciplinary treatment in the centre. For
children, the centre
aimed to organize this treatment as much as possible in the children’s
home
environment, in collaboration with local services and the school.

Children generally improved more than adults, as has been described in the
literature
(see chapter 4). However, due to the small number of participants, no
statistical
calculations were performed.

It should be mentioned that in 1999, the rehabilitation centre
“Zeepreventorium” in De
Haan, specialized in residential rehabilitation for children and
adolescents (e.g.
mucoviscidosis, asthma, obesitas) also started residential rehabilitation
for adolescents
(12-18 years) suffering from CFS. Only patients not able of following
ambulatory
rehabilitation in their own neighbourhood are accepted. The maximal
treatment
duration, provided by a multidisciplinary team, is 6 months. By the end of
April 2008, 38
CFS adolescents had been treated.


6.2.5 Belgian CFS reference centres: conclusions and discussion

6.2.5.1 Adults

Based on available epidemiological data for other countries, it can be
estimated that
about 20 000 Belgian adults suffer from CFS.

Between April 1st, 2002 and December, 31st 2004, 1 655 patients entered
the reference
centres, but in three centres, long waiting lists exist. For more than 90%
of the patients,
the diagnosis of CFS was confirmed. Most referred patients had been
fatigued since a
long time (average of 4.10 years), and had psychological problems or
psychiatric comorbidities,
although the level of an average outpatient psychiatric population was not
reachedk.

Approximately 80% of the CFS patients followed an interdisciplinary
program in the
centre; the time between initial outpatient consultation and start of the
rehabilitation
was on average 4 to 5 months. A solution should be found for this long
time period, as
well as for the overlap in service between the first outpatient
consultation and the
multidisciplinary team “bilan” (evaluation).

Although the referring medical doctor was informed by phone or letter, as
usual among
physicians, very few other initiatives to develop a collaborative care for
the patient
between the first or second line and the reference centres, were explored.
One of the
initial aims of the project, to develop a three-level system in which many
or even most
of the patients would be treated in the first or second level, as close to
their living place
as possible, was not reached. It is clear that other pathways should be
tried out to
reach this goal.

Treatment was ended in only 2.8% of the cases by the patient himself, so
the motivation
of the patients for the treatment seemed to be high. In 71% the team
considered the
patient to have reached his maximal capacity — although no patient had
been cured.
Therapy provided systematically included CBT and GET. After treatment
duration of 41
to 62 hours of rehabilitation per patient of which 83% group based, spread
over 6 to 12
months, patients’ subjective feelings of fatigue were improved, but
results concerning
quality of life were equivocal. Psychological problems or psychiatric
co-morbidities
improved, but still fell outside the range of healthy adults. Physical
capacity did not
change; employment status decreased at the end of the therapy. It is
difficult however,
to judge these results, since no control group had been included.


6.2.5.2 Children and adolescents

A limited number of children has been seen or treated so far, and the
capacity of the
children’s team is not yet reached. The children’s team provided an
integrated service,
directly in the child’s own environment as much as possible. Apart from
this ambulatory
service, residential treatment for adolescents (12-18 years) is possible
in the children’s
rehabilitation centre “Zeepreventorium” in De Haan (Flemish region).

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/INAMIl.

According to the most recent data available (June, 30th, 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 20th 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.


Table 12. RIZIV/INAMI expenses CFS Reference Centres All Centres

2002 2003 2004 2005 2006 2007*


Total Bilan (Euro)
74 204
420 979
404 689
482 245
531 946
576 238*


Total Rehabilitation (Euro)
30 404
496 093
683 962
729 612
650 648
494 710*

Total (Euro)
104 608
917 072
1 088 651
1 211 857
1 182 594
1 070 948*

Maximal Expenses limited to (Euro)
Start Up Start Up Start Up 1 543 367 1 622 250 1 649 858
*preliminary results (May 2008)

6.3.3 Other Belgian data: conclusion

The data taken into account in the RIZIV/INAMI report (2006) largely rely
on data from
the reference centres between 2002 and 2004. Since then, it seems that a
shift towards
a more important diagnostic function is taking place.

-----------------------------------

Footnote from Tom Kindlon:
The summary above says:

"Employment status decreased at the end of the therapy, from an average of
18.3% of a 38h- working week, to 14.9%. However, it should be noticed that
this was not
one of the preset goals of the interdisciplinary treatment, and that no
specific
occupational rehabilitation was foreseen. The percentage of patients
living from a
sickness allowance increased slightly from 54 to 57%."

However the actual report says:
"Conformment la convention, l’amlioration significative du
fonctionnement socioprofessionnel des patients
est l’un des objectifs de la rducation. Les donnes montrent nanmoins
que le pourcentage
moyen d’activits professionnelles rmunres diminue encore jusqu’ 14,9%
la fin de la
rducation. Six pour cents des patients travaillent plus qu’avant la
rducation, 10% travaillent
moins."

(Quick translation)
"In accordance with the convention, significant improvement in the
socioprofessionnel functioning of the patients is one of the
objectives of the re-education/re-training. Nevertheless the data
shows that the average percentage of paid work decreased further to
just 14.9% at the end of the re-education/re-training.
Six per cent of the patients were working more than before the re-
education/re-training, 10% were working less. For 84% of the
patients the percentage of paid work didn't change."]

e.g. Annex 3:
"Tableau. Efforts de rinsertion professionnelle."
"Things done to try to bring about reintegration into the workforce"

Tables 69-71 has lots of interesting data on the effect on
socioprofessionnel functioning (as I discussed previously:
http://tinyurl.com/225qje i.e.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161&I=-
3 )
 
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Given the methodological problems idenitified, I wonderd if this study is being/has been repeated since? Certainly the findings here are not impressive. But then neither were the results of the Price 2009 Cohcrane Review of CBT (n=1,000+). A large amount of data now indicates that CBT/GET is not the answer.

Certainly a lot now rests on the PACE trial results, which I think are due in the autumn.
 

Dolphin

Senior Member
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Given the methodological problems idenitified, I wonderd if this study is being/has been repeated since? Certainly the findings here are not impressive. But then neither were the results of the Price 2009 Cohcrane Review of CBT (n=1,000+). A large amount of data now indicates that CBT/GET is not the answer.

Certainly a lot now rests on the PACE trial results, which I think are due in the autumn.
I don't know how far you got but these have employment data (a bit worse at the end and at follow-up than at the start) so even worse than the Price 2009 Cochrane Review. Usually employment status hasn't been measured but because people improved on a few questionnaires some say it shows work capacity has improved/ability to work has been restored. More people improved than got worse on the questionnaires here - but the employment data (e.g. hours worked), didn't match it.
 

Dolphin

Senior Member
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Belgian Newspaper ("De Morgen") article on Belgian CBT/GET CFS clinics

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810D&L=CO-CURE&P=R3646&I=-3&m=18356

Belgian Newspaper ("De Morgen") article on Belgian CBT/GET CFS clinics (Dutch version and very rough English translation)

[I used a translation tool and then re-ordered it a bit. I don't speak Dutch
(I just have three years of German (fifth language) and haven't tried my
best but it might be of interest to some. I've appended the original Dutch
version as people can work from that to make better translations if they
wish. I'm not sure what "dipje" translates as ("dip" seems to equal "dip").
RIZIV = INAMI (public health-insurance). Tom K.]

-------------

Flanders invests in CFS-therapy that according to patients and experts does
not work

Doctor, I am tired

That then will be 10,000 Euro.

The past six years the Flemish government 10.2 invested million Euro in an
unique therapy for helping the chronically tired. The therapy
is certainly unique: "We had a little bit of splashing in a swimming pool."
Did it
help? Of the 600 test bunnies many were at the end even more tired.

Marc D. was delighted when he learned in 2002, that there were set up
in Flanders centres to help people with the Chronic Fatigue Syndrome (CFS).
If that became no time. Already the 41 year old laboratory assistant had
spent three years going to general practitioners, hoping that someone could
help him to get rid of
fatigue and joint pains.

Doctor Vogelaars, head of CFS-Centre in Ghent, gave me hope," says
Marc. "We will get you better because of this, he promised during the
initial
interview conversation. But the treatment was not really what Marc had
expected.

Approximately every fourteen days we had to come down for two hours to the
centre. The first week of the month, we had to do exercises in a heated
swimming pool, like trips on our toes to the other side of the bath or
stretches at the edge. The third week of the month of the month had been
reserved for a group conversation. That was then the complete therapy, more
did not follow. In the beginning I
tried to put my scepticism aside and threw myself 100 per cent into the
treatment. I was accompanied by certified doctors, psychiatrists and
physiotherapists. I thought they knew what they were doing,
but each form of improvement stayed away. After nine months therapy in the
reference centre I was still everyday dog-tired.

Marc is not the only patient of CFS-Reference Centres whose situation
there was not especially improved by the treatment. On 3 October briefly
appeared there in newspapers reported concerning an appraisal report which
the Riziv had done concerning the five reference centres in Belgium: Tired
scarcely result in fight chronically. CFS-Centres shoot shortage.
It is not only the Riziv and a couple of tired patients
who find the therapy worthless. It is also said by an independent watchdog
for medical expenditure to the federal centre for health care (KCE).

The results of the first three years were very disappointing, say Marijke
Eyssen of the KCE. In the areas of quality of life, fitness and the
resumption of work there is too little noticeable improvement. The situation
of 35 per cent of the patients had even deteriorated after the treatment. We
had certainly not expected that all CFS patients be entirely healed after
the therapy. CFS is a complex sickness with unknown origin, where no magic
cure for exists. But we had hoped somewhere for a positive tendency. This
report calls form a scientific re-evaluation of the centres. Should
financing
be continued or perhaps another treatment exists?

He who tries nothing wont achieve anything (nothing tried, nothing gained)
but the Riziv-report at least poses questions about the costs involved and
the
benefits the therapy produces.

Between 2002 and 2005 600-odd patients completed their
rehabilitation programme entirely. Whereas that in fact the double or even
it triple of that number would have had be. Marc Van Impe, President of
patient association CFS platform, do sums rapidly: Six hundred patients were
treated with a budget of 6.8 million euro, if you count the opstartbudget of
the government. That is more than 11,000 euro by patient. Then you
nevertheless you would think that here and there are people who are healed?

Inform at about twenty ex-patients of the reference centres does the
opposite suspect. Feels in search of someone who improves itself after the
therapy? Then zul you long can zoeken, say Kaat D., which followed a
treatment in 2003, in the reference centre of Ghent.

Just like felt the other twelve patients in my group, I at the end was worse

more badly and more exhausted than when I started, says Kaat. It took me
an hour and a half to attain the centre each time. Then what to
will splash in a bath. The temperature in the swimming pool where we got
hydrotherapy, was ice-cold. CFS-patients have an disturbed immune system, as
a result of which they can remain this way already warm with difficulty.
After such a zwempartijtje we sat shivering for an hour in the dressing
room. Frozen to
on the bone.

The general impression of many patients is that there cheaper manners
existed to once will swim the two weeks. We could have done those exercises
just
as well at home on a mat, says a patient.

Rudy R. (54) had it especially cumbersome with the gradual exercise therapy
which he got dished up in the Pellenberg CFS-centre. Differently than
in Ghent he got rehabilitation exercises on the dry land, but the result
was identical. My muscles and joints hurt even more afterwards. The
physiotherapist fully believed that in the long run I would feel improved.
Therefore I kept at it. I did not become better from it. On the contrary.
After
each exercise session I lay for four days from the morning to night in bed.
I didnt want to move one
step. After nine months therapy I was exhausted. Now I hear from
several CFS-specialists that forced fitness training can
be enormously detrimental for CFS-patients.

Even worse than the fitness training Rudy found was the
fortnightly group conversations, or cognitive behaviour therapy. The
reference centres have been based entirely on the biopsychosocial model,
he says. That term is used in practice by
psychiatrists and therapists who see CFS as something psychosomatic, as
something that sits between your ears (i.e. is in your head). Each time I
brought up my physical
symptoms in the discussion in those group conversations, that was treated as
being wimpy. We have not time for that, was the impression. I thought
nevertheless that I
there drunk to attain from my fatigue and myalgias.

Just like Rudy, Katrien M. thought the psychosomatic
treatment in the reference centres was daft. We had make drawings to
ventilate our
negative feelings concerning our sickness, say ex-actress, who in June in
CFS-centre of Antwerp wound up her treatment. Moreover we had play sample
situations. For example: You are mother of three children, who works
once again fulltime. On a day you have had enough of it. You can no longer.
How
attain your from that dipje? Dipje: thus CFS was therefore defined at the
centre. Gradually I started wonder itself really: Did I imagine those
physical symptoms perhaps? But if then I ran up a staircase or to the shop,
I was broken each time and had I had to lie on my bed. That was real,
that was no fantasy, but there they had no ears in the nasty centre.

The only physical test which was done on Katrien M. in those nine months at
Katrien
M., was a bicycle test done at the start and after the treatment. By that
evidence
my condition had got much worse in those nine months.
When I asked my internist asked for an explanation, she answered back with a
question.
Had I tried my best? Was I nevertheless recovered?

Greta Moorkens, vice head of CFS-referentiecentre in Antwerp, denies
that the reference centres achieve no results. Many patients have benefited,
from our therapy. Our focus is more on accepting the sickness, that you can
no longer the same lead with CFS life as in former days.

A third of the patients feels themselves afterwards, however, worse.

Moorkens: Sixty per cent of the patients say be able handle better that
fatigue. That is nevertheless also already a lot? A wonder pill which can
remove chronic fatigue in one go, unfortunately not yet exists.

Do you continue stand therefore behind your working method?

I do not exclude the possibility that a combination of our therapy and a
biomedical
treatment, which works with diets and antibiotics produce, might perhaps get
better
results. So far there is however absolutely no scientific study that
confirms that. Of course the patient is free to choose the treatment which
produces most of improvement according to him or her.

Does the patient really so much choice, that is the question.

I am quite eager to try another treatment, says Kaat. Only we are obliged to
present ourselves a reference centre. If we want qualify for an invalidity
benefit, then we must can present a diagnosis and treatment file from a
centre
to the Riziv. If not the chance is big that the control doctor suspends
your benefit.

After her treatment in CFS-centre Kaat went quickly to CFS-specialist Kenny
de Meirleir, who tries to help patients with antibiotics and an adapted
diet. Ten years he was one of the pioneers of cognitive behaviour
therapy. Till I evaluated the therapy and saw that only 3 per cent were
effectively improved/better (?) after the treatment.

Three per cent, which is the, however, very little, recognised Meirleir.
I have been switched over on another method. It is criminal to continue to
hold on
to a therapy which does not work.

Etienne C. is in more than one respect an experienced expert. 6 years ago
the 54-year old insurance agent was cut down by CFS. I could no 500 meters
more walk without needing a shower, whereas I
jogged in former days each morning for ten kilometres, sighs Etienne.
nothing else could be done except give up my work to give and apply for
benefits.

As ex-Fortis insurance agent Etienne knew that would become not easy.
Insurance companies work according to the mantra if we can do it, we pay no
money. That was instilled in me years long. Because of my sickness I was now
suddenly on the other hand of the line. And then still as CFS-patint. Since
still no definte medical cause for chronic fatigue has been found, the
insurance wants to approach it as a mental sickness, so that it must pay no
invalidity benefit. With me it was the same tune. I have tried to get hold
of my file at
CFS-centre of Ghent, where I was diagnosed and I did the treatment. What
happened then? They do not retrieve it.

Etienne coloured red of anger then he recently Riziv-report under the nose
got. 10.2 million euro! With that money them already a lot of CFS-patients
could have given the benefits they are basically entitled to.

---------------



door Kim Van de Perre

Vlaanderen investeert in een CVS-therapie die volgens patinten en experts
niet werkt

Dokter, ik ben moe

Dat is dan 10.000 euro

De afgelopen zes jaar investeerde de Vlaamse overheid 10,2 miljoen euro in
een unieke therapie voor hulp aan chronisch vermoeiden. Uniek is de therapie
zeker: 'We moesten een beetje in een zwembad plonzen.' Of ze ook hielp? Van
de 600 proefkonijnen waren velen na afloop vooral 'nog meer moe'.

Marc D. was de koning te rijk toen hij in 2002 vernam dat her en der in
Vlaanderen hulpcentra voor mensen met het chronischvermoeidheidssyndroom
(CVS) werden opgericht. Als dat geen tijd werd. Al drie jaar liep de
41-jarige laborant alle huisartsen af, hopend dat iemand hem van die
voortdurende vermoeidheid en gewrichtspijnen af kon helpen.
"Dokter Vogelaars, hoofd van het CVS-centrum in Gent, gaf me weer hoop",
zegt Marc. "We gaan je hierdoor krijgen, beloofde hij tijdens het
intakegesprek." Maar de behandeling was niet echt wat Marc ervan had
verwacht.

"Om de veertien dagen moesten we voor voor twee uur naar het centrum
afzakken. De eerste week van de maand moesten we wat oefeningen doen in een
verwarmd zwembad, zoals op onze tenen naar de overkant van het bad trippelen
of stretchen aan de rand. De derde week was voorbehouden voor een
groepsgesprek. Dat was dan de hele therapie, meer kwam er niet bij kijken.
In het begin probeerde ik mijn scepsis opzij te zetten en wierp ik me 100
procent op de behandeling. Ik werd begeleid door gediplomeerde artsen,
psychiaters en kinesisten. Ik ging ervan uit dat die wisten waarmee ze bezig
waren, maar elke vorm van verbetering bleef uit. Na negen maanden therapie
in het referentiecentrum was ik nog alle dagen hondsmoe."

Marc is lang niet de enige patint van de CVS-referentiecentra wiens
toestand er vooral niet op verbeterde door de behandeling. Op 3 oktober
verscheen er in kranten een kort bericht over een beoordelingsrapport dat
het Riziv maakte over de vijf referentiecentra in Belgi: "Amper resultaat
in strijd chronisch vermoeiden. CVS-centra schieten tekort."
Het is niet alleen het Riziv en het zijn ook niet alleen een paar
doodvermoeide patinten die de therapie waardeloos vinden. Dat zeg ook het
Federale Kenniscentrum voor Gezondheidszorg (KCE), een onafhankelijke
waakhond voor medische uitgaven.

"De resultaten van de eerste drie jaar waren erg teleurstellend", zegt
Marijke Eyssen van het KCE. "Zowel op het vlak van de levenskwaliteit, de
conditie als de werkhervatting is er te weinig verbetering merkbaar. De
toestand van 35 procent van de patinten was zelfs verslechterd na de
behandeling. We hadden zeker niet verwacht dat alle CVS-patinten na de
therapie helemaal genezen zouden zijn. CVS is een complexe ziekte met
onbekende oorsprong, waar geen wondermiddel voor bestaat. Maar we hadden
ergens wel op een positieve tendens gehoopt. Dit rapport roept op tot een
wetenschappelijke revaluatie van de centra. Moet de financiering worden
voortgezet of bestaat er misschien een andere aanpak?"
Wie niets probeert, zal weinig realiseren, maar het Riziv-rapport roept op
zijn minst vragen op over de verhouding tussen wat de therapie kost en wat
ze oplevert.

Tussen 2002 en 2005 zouden een 600-tal patinten hun revalidatieprogramma
volledig hebben afgerond. Terwijl dat eigenlijk het dubbele of zelfs het
driedubbele van dat aantal had moeten zijn. Marc Van Impe, voorzitter van
patintenvereniging CVS Platform, maakt vlug de rekensom: "Zeshonderd
patinten werden behandeld met een budget van 6,8 miljoen euro, als je het
opstartbudget van de overheid meetelt. Dat is meer dan 11.000 euro per
patint. Dan zou je toch denken dat hier en daar ook mensen genezen zijn?"

Navraag bij een twintigtal ex-patinten van de referentiecentra doet het
tegendeel vermoeden. "Op zoek naar iemand die zich beter voelt na de
therapie? Dan zul je lang kunnen zoeken", zegt Kaat D. , die in 2003 een
behandeling volgde in het referentiecentrum van Gent.

"Net als de andere twaalf patinten in mijn groep voelde ik me na afloop nog
slechter en meer uitgeput dan voor ik eraan begon", vertelt Kaat. "Ik was
telkens anderhalf uur onderweg om in het centrum te geraken. Om dan wat te
gaan plonzen in een bad. De temperatuur in het zwembad waar we de
'hydrotherapie' kregen, was ijskoud. CVS-patinten hebben een verstoord
immuunsysteem, waardoor ze zo al moeilijk warm kunnen blijven. Na zo'n
zwempartijtje zaten we een uur te klappertanden in de kleedkamer. Bevroren
tot op het bot."

De algemene indruk bij veel patinten is dat er goedkopere manieren bestaan
om om de twee weken eens te gaan zwemmen. "Die oefeningen hadden we net zo
goed thuis op een mat kunnen doen", zegt een patint.

Rudy R. (54) had het vooral lastig met de 'graduele oefentherapie' die hij
in het CVS-centrum van Pellenberg voorgeschoteld kreeg. Anders dan in Gent
kreeg hij zijn revalidatieoefeningen op het droge, maar het resultaat was
identiek. "Mijn spieren en gewrichten deden daarna nog meer pijn. De
kinesiste hield vol dat ik me op termijn beter zou voelen. Dus ik hield vol.
Beter werd ik er niet van. Integendeel. Na elke kinesessie lag ik vier dagen
lang van 's morgens tot 's avonds in bed. Ik kon geen stap meer verzetten.
Na negen maanden therapie was ik doodop. Nu krijg ik van verschillende
CVS-specialisten te horen dat geforceerde conditietraining enorm schadelijk
kan zijn voor CVS-patinten."
Nog erger dan de conditietraining vond Rudy de tweewekelijkse
groepsgesprekken, of cognitieve gedragstherapie. "De referentiecentra zijn
volledig georinteerd op het biopsychosociale model", zegt hij. "In de
praktijk wil dat zeggen dat je voortdurend wordt opgevolgd door psychiaters
en therapeuten die CVS benaderen als iets psychosomatisch, als iets dat
tussen de oren zit. Telkens als ik mijn lichamelijke klachten ter sprake
bracht in die groepsgesprekken, werd dat weggewimpeld. 'Daar hebben we geen
tijd voor', klonk het. Ik dacht nochtans dat ik daar zat om van mijn
vermoeidheid en spierpijnen af te geraken."

Net als Rudy werd Katrien M. naar eigen zeggen "knettergek" van de
psychosomatische aanpak in de referentiecentra. "We moesten tekeningen maken
om onze 'negatieve gevoelens over onze ziekte' te ventileren", zegt de
ex-actrice, die in juni haar behandeling in het CVS-centrum van Antwerpen
afrondde. "Daarnaast moesten we voorbeeldsituaties naspelen. Bijvoorbeeld:
'Je bent moeder van drie kinderen, die ook nog eens fulltime werkt. Op een
dag heb je er genoeg van. Je kunt niet meer. Hoe geraak je uit dat dipje?'
'Dipje': zo werd CVS dus omschreven op het centrum. Stilaan begon ik me echt
af te vragen: beeld ik me die lichamelijke symptomen misschien in? Maar als
ik dan een trap op liep of naar de winkel ging, was ik telkens kapot en
moest ik op mijn bed gaan liggen om te bekomen. Dat was echt, dat was geen
inbeelding, maar daar hadden ze in het centrum geen oren naar."

De enige fysieke test die in die negen maanden bij Katrien M. werd
afgenomen, was een fietsproef bij aanvang en na afloop van de behandeling.
"Uit die proef bleek dat mijn conditie sterk achteruit was gegaan in die
negen maanden. Toen ik mijn interniste om een verklaring vroeg, antwoordde
ze met een tegenvraag. Had ik wel genoeg mijn best gedaan? Wilde ik wel
genezen?"

Greta Moorkens, adjunct-diensthoofd van het CVS-referentiecentrum in
Antwerpen, ontkent dat de referentiecentra geen resultaten boeken. "Er zijn
wel veel patinten gebaat bij onze therapie. Alleen ligt onze focus meer op
het accepteren van de ziekte, van het feit dat je met CVS niet meer
hetzelfde leven kunt leiden als vroeger."

Een derde van de patinten voelt zich achteraf wel slechter.

Moorkens: "Zestig procent van de patinten zegt beter met die vermoeidheid
te kunnen omgaan. Dat is toch ook al heel wat? Een wonderpil die chronische
vermoeidheid in n klap kan wegnemen, bestaat jammer genoeg nog niet."
U blijft dus achter uw werkwijze staan?

"Ik sluit niet uit dat een combinatie van onze therapie en een biomedische
aanpak, die werkt met diten en antibiotica, misschien betere resultaten
oplevert. Tot nu toe is er echter geen enkele wetenschappelijke studie die
dat bevestigt. Natuurlijk staat het de patint vrij om voor de behandeling
te kiezen die volgens hem of haar de meeste verbetering oplevert."
Of de patint echt zoveel keuze heeft, is nog de vraag.
"Ik zou heel graag een andere behandeling zoeken", zegt Kaat. "Alleen worden
we verplicht om ons in een referentiecentrum aan te melden. Als we voor een
invaliditeitsuitkering in aanmerking willen komen, dan moeten we een
diagnose en behandelingsdossier van een centrum kunnen voorleggen aan het
Riziv. Zo niet is de kans groot dat de controlearts je uitkering schorst."

Na haar behandeling in het CVS-centrum ging Kaat te rade bij CVS-specialist
Kenny De Meirleir, die zijn patinten probeert te helpen met antibiotica en
een aangepast dieet. Tien jaar geleden was hij een van de pioniers van
cognitieve gedragstherapie. "Tot ik de therapie evalueerde en merkte dat
slechts 3 procent zich effectief beter voelde na de behandeling."

Drie procent, dat is wel hl weinig, erkende De Meirleir. "Ik ben
overgeschakeld op een andere methode. Het is crimineel om te blijven
vasthouden aan een therapie die niet werkt."

Etienne C. is in meer dan n opzicht ervaringsdeskundige. Zes jaar geleden
werd de 54-jarige verzekeringsagent geveld door CVS. "Ik kon geen 500 meter
meer wandelen zonder in elkaar te storten, terwijl ik vroeger elke ochtend
tien kilometer ging joggen", zucht Etienne. "Er zat niets anders op dan mijn
werk op te geven en een uitkering aan te vragen."
Als ex-verzekeringsagent bij Fortis wist Etienne dat dat niet makkelijk zou
worden. "Verzekeringsmaatschappijen werken volgens de mantra 'wat kunnen we
doen om geen geld uit te keren'. Dat werd me jaren lang ingeprent. Door mijn
ziekte bevond ik me plotseling aan de andere kant van de lijn. En dan nog
als CVS-patint. Aangezien er nog altijd geen sluitende medische oorzaak
voor chronische vermoeidheid is gevonden, wil de verzekering het als een
psychische ziekte benaderen, zodat ze geen invaliditeitsuitkering moet
uitbetalen. Bij mij was het hetzelfde liedje. Ik heb geprobeerd mijn dossier
te bemachtigen bij het CVS-centrum van Gent, waar ik in 'behandeling' was en
waar de diagnose CVS was gesteld. Wat blijkt nu? Ze vinden het niet terug."

Etienne kleurde rood van woede toen hij onlangs het Riziv-rapport onder de
neus kreeg. "10,2 miljoen euro! Met dat geld hadden ze al heel wat
CVS-patinten gewoon de uitkering kunnen geven waar ze recht op hebben."

Kaat D.:
Het water in het zwembad waar we de 'hydrotherapie' kregen, was ijskoud. Na
zo'n zwempartijtje zaten we een uur te klappertanden in de kleedkamer

Rudy R.:

Beter werd ik niet van de therapie. Integendeel. Na elke kinesessie lag ik
vier dagen van 's morgens tot 's avonds in bed. Ik kon geen stap verzetten.
Na negen maanden was ik doodop
Katrien M.:

We moesten situaties naspelen. 'Je bent moeder van drie kinderen en werkt
fulltime. Op een dag heb je er genoeg van. Je kunt niet meer. Hoe geraak je
uit dat dipje?' Dipje?!
Deskundige Marijke Eyssen
Zeshonderd patinten werden behandeld met een budget van 6,8 miljoen euro.
Dat is meer dan 11.000 euro per patint. Dan zou je toch denken dat hier en
daar ook mensen genezen zijn?

Marc Van Impe (patintenvereniging CVS Platform):
CVS-patint Rudy R.:
Beter werd ik niet van de therapie. Integendeel. Na elke kinesessie lag ik
vier dagen van 's morgens tot 's avonds in bed. Ik kon geen stap verzetten.
Na negen maanden was ik doodop

Publicatiedatum : 2008-10-25
BRON: DE MORGEN
 

Mithriel

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Thank you for gathering all this information together.

It is infuriating how much proof and validation they are calling for about retroviruses when there is an overwhelming amount of evidence that their preferred treatments just don't work.

Hypocrites all.

Mithriel
 
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Thanks again, Dolphin, for all the info which I have finally managed to read!

Let's be honest, the results are shockingly bad. I take your point about them being worse than the Price review but perhaps that's because the Belgium auidit is 'real life' rather than clinical trials?

I'm sure that Wessely noted in a recent paper about something else (cortisol?), that the CBT results themselves were poor (this paper? http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7161684) and went on to speculate that real life clinical practice never matches clinical trials - actually I think this is true in general, not just of CBT for ME.

I wondered if NICE will be considering these Belgium results.

Also, Esther Crawlye's BRAME network is apparently monitoring treatment results from all participating clinics. I will try to contact her to see if any results are available.
 

Mithriel

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Esther Crawley is nothing to do with BRAME :Retro smile: She is on the dark side, the one who is intending to do a trial of LP on children.

Mithriel
 
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Esther Crawley is nothing to do with BRAME
Apologies, I got my acronyms mixed up, no offence to BRAME intended. Esther Crawley is Chair of BACME, who apparently have data on the treatment outcomes of thousands of patients who pass through the clinics of BACME members who all practice CBT and GET. Given the Belgium results it would be interesting to see UK results for similar large-scale CBT & GET.
 

Dolphin

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Apologies, I got my acronyms mixed up, no offence to BRAME intended. Esther Crawley is Chair of BACME, who apparently have data on the treatment outcomes of thousands of patients who pass through the clinics of BACME members who all practice CBT and GET. Given the Belgium results it would be interesting to see UK results for similar large-scale CBT & GET.
Yes, it would.

AfME got money from a massive fundraiser in 2006 (raised over 200,000 in one night) part of which was allocated for research (first research they'd funded in years) and asked for submissions. They funded two: one investigated the setting up a post-mortem biobank thing (good). The other was given to Esther Crawley, Barts (Peter White's service) and somewhere else (east Midlands I think - dodgy area) for a project like this. As I recall, Esther Crawley and team then got more money for the project from somewhere else. Anyway, given her dismissal of the findings of the AfME/AYME 2008 survey results (with regard to the high rates of adverse reactions to GET, etc - despite being the medical advisor to AYME) along with her enthusiasm for the NICE guidelines (and Peter White's enthusiam for the final version - he likes to promote them), I think I could have found better people to do the review and/or better ways for research money to be spent. My guess is that AfME were trying to "lick up" to some people. Maybe I'm wrong.
 
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Esther Crawley is no longer BACME chair but is PI for their National Outcomes Database. They are planning to publish results some time next year but Esther commented that the situation is complicated as most teams offer more than one treatment eg Activity management (Pacing) as well as CBT, so untangling the effects of the different therapies won't be easy. Guess we'll just have to see what comes out of the process.
 

Dolphin

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Esther Crawley is no longer BACME chair but is PI for their National Outcomes Database. They are planning to publish results some time next year but Esther commented that the situation is complicated as most teams offer more than one treatment eg Activity management (Pacing) as well as CBT, so untangling the effects of the different therapies won't be easy. Guess we'll just have to see what comes out of the process.
I can't remember all the details but I've heard people complain that the Minimum Data Set (data that all services need to collect) isn't very exciting.
 

Dolphin

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A report which summarises the data

Snow Leopard has highlighted this on another thread. I read this report before but thought I might as well highlight it:
http://www.kce.fgov.be/Download.aspx?ID=1222
See pages 77-83 for a piece on the Belgian rehab clinics.
They spin it slightly which is why I prefer the original [An example of spin: It says that there was no explicit intention to help people get into the workforce but this is not correct – the main file talks about sessions to help people get into the workforce].
 

Dolphin

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Explaining some of the tables

I have just written an E-mail to somebody explaining some of the data and how to read it. I thought I'd get value out of the work and post an edited version here. Some of this is probably a repeat of what was translated above.
==========
A lot of the most interesting data starts at Tableau 63 (Table 63) (pp148)

This concerns the CIS-20 questionnaire.
It has 4 subscales (in order):
Subjective Fatigue
Physical Activity
Motivation
Concentration

We get information on two timescales: The change between the start of the program to the end of the programme (M1->M2)
And
The change from the start of the program to 6 months after the end of the program (M1->M3)

So if one looks at pp.148, for subjective fatigue for “total adultes” (all the adults – it combines the data from the five centres), one sees that the average score at M1 was 51.7 (out of 56). At M2, it was 47,0.

If one goes further across, one sees that the number improved (in this case got lower) for 61% of adults, there was no change for 18% and got worse for 21%.
Similarly, one can get percentages on that page for:
Physical Activity
Motivation
Concentration
for time period M1->M2.
Subjective Fatigue suffers from a ceiling effect for CFS, so the percentages who got worse are higher for the other ones (there may be a bit of a ceiling effect with them also but I know there is a ceiling effect for the CIS-20 subjective fatigue)

On pp.149, one gets the same percentages for time period M1->M3.

----------
On pp.150 and 151, one gets these figures for the eight subscales of the SF-36, the most widely used instrument in CFS for time period M1->M2.
On pp.152 and 153, one gets these figures for time period M1->M3.
This includes pain (douleur)

-----
On pps 154-157, one gets the data for the subscales of the SCL-90.
This includes sleep problems (“Troubles du sommeil”).

-------
On pps 158-161, one gets the data for the exercise test. Lots of people didn’t do it at some stage so the sample size is lower than filled in the questionnaire.
One can see the reductions in the numbers who did a maximal exercise test on page 162. It might be slightly confusing as the number is different (i.e. the usual timepoint M2 is M3 on this, M3 is M4 on this).

-------
PP163 is the self-efficacy scores

-----
PPs164 and 165 is the evolution of hours spent in paid employment, non-salaried activities e.g. housework, and a combination.
I’ll explain the data.
At the start of the program, people worked on average 18.3% of a 38 hour week or 6.954 hours a week. At the end, they worked on average 18.3% of a 38 hour week or 5.662 hours a week.
6% worked more hours, 84% worked the same amount of hours (most of these were 0 hours) and 10% worked fewer hours.

I then saw in Table 71, that 27% were working at the start (and 25% were working at the end). Only people who were working can reduce the number of hours so 10/27 or 37% of those working at the start reduced the number of hours they were working.

On Table 70, one gets a breakdown of those who weren’t working at the start of the program, but were working further on, broken down by the length of time they hadn’t worked.
The percentages aren’t big.
Only 5% had started work by the end.
8% by six months later.
8% (22) by six month later again. However 82% of those were only working part-time. So out of 266 patients who weren’t working before the program, only 4 were working full-time 6 months and 12 months after the rehab program!

So that’s the main data.
 

Dolphin

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From Johan Mares (@maresjohan) on Twitter

"CFS centers in Belgium closed coz GET & CBT proved to be ineffective. The new centers will open in September and will offer GET & CBT #mecfs"
https://twitter.com/maresjohan/status/485426355182768129

Information in Dutch on the "new" centres: http://www.riziv.fgov.be/care/nl/revalidatie/convention/chronic-fatigue/diagnostic-center.htm

Google Translation

Multidisciplinary diagnostic centers for CVS
These centers investigate whether someone has CFS and suggest a treatment. If indicated, is that treatment with graded exercise therapy or cognitive behavioral therapy. These treatments are given by therapists from the vicinity of the patient. The GP has a central role and is reimbursed for his input. The fund pays the guidance in the center and the treatments described largely returned.

What centers?
The multidisciplinary diagnostic centers for CFS consultation department of a general hospital or university. The centers are formed by a team of different health care providers who specialize in CFS. The team includes a physician, internist, a psychiatrist and a physical physician. If necessary, the patient is also examined by other specialists of the hospital.

The centers will basically start on 1-9-2014. There are (for now) only candidate centers in Flanders. These hospitals will be announced when the agreement was concluded with them.

What do the centers?
The centers offer:

  • an integrated approach addressing all the physical, psychological and social aspects of the disease
  • a thorough, multidisciplinary diagnostic investigation
  • a treatment plan
  • regular monitoring and guidelines for therapists in the area of patient treatments give
  • a plan of partial or complete re-employment if this is feasible for the patient

    What are the main place of treatments that the centers can imagine?
    Cognitive behavioral therapy and graded exercise therapy are the only treatments that enough is scientifically proven that they can reduce. CFS symptoms These treatments are represented by the centers and the research shows that they can lead to an improvement of a particular patient. These treatments are not realized in the center, but by cognitive behavioral therapists and physiotherapists, respectively, in the vicinity of the patient. (If no cognitive behavioral found in your area, you can also follow the hospital treatment center.)

    Cognitive behavioral therapy consists of 17 individual sessions of 50 minutes. NIHDI determines who qualifies as acognitive behavioral therapist for CVS . These are therapists who have followed. Long training


    How can you as a patient eligible for counseling at a center?
    You must be signed by your doctor. Referred to a center Your GP should be of the opinion that you have CFS and a specialized research is needed to understand your symptoms and a more appropriate treatment to offer a better understanding.

    You will be first examined by the medical internist from the center. If the doctor confirms the suspicion CVS, you are eligible for comprehensive multidisciplinary diagnostic examination.

    If the team on the basis of extensive diagnostic testing confirms that you indeed have CFS, you are eligible for treatment with cognitive behavioral therapy and graded exercise, as the center believes that this treatment useful for you to improve your symptoms.

    If you have previously been in a former reference to CVS, you will not re-qualify for a new multidisciplinary diagnostic study in one of the new diagnostic centers. You will in this case be eligible for reimbursement of cognitive behavioral therapy as the CFS diagnosis earlier you are diagnosed with a reference.


    What pays the sickness back? What the patient pays?
    The fund pays the guidance in the center and the treatments (cognitive behavioral therapy or graded exercise therapy) is largely back. You, the patient pays a co-payment per performance.

    You need to ask your health insurance. Repaying your guidance by health insurance The center will help you with this request.


    What role and compensation for the doctor?
    The GP has a central role. He refers patients and is informed in writing of the results of the diagnostic tests and the contents of the treatment advice. He represents the first line health care providers and the patient referred to a physiotherapist as appropriate for the graded exercise. (The center finds a cognitive behavioral therapist to the patient.)

    The GP will be invited to participate in consultations with the doctors at the center. PortionBecause a lot of importance is attached to, the doctor receives a fee for the participation of 65 euros.It is not necessary that the practitioner moves to the center to participate in the consultations.The doctor can for example take part in the consultation via chat.Even then, his participation reimbursed.

    Additional explanation
    Inami agreement with multidisciplinary diagnostic centers for CVS (PDF)

    Contact
    Eveline De Coster
    Tel. : 02 739 73 53
    E-mail: eveline.decoster[AT]riziv.fgov.be
 
Last edited:

Valentijn

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Right ... CBT and GET centers are being shut down because they have been shown not to work in the real world. Sensible enough.

And then they will re-open as CBT and GET centers, because the research claims that CBT and GET work :meh:

Are they completely unable to get their heads out of their anal orifices long enough to stop reading the low-quality and badly spun BPS research summaries stored therein? Can they at least think about the issue rationally? Or even *gasp* read some real research?
 

Dolphin

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Right ... CBT and GET centers are being shut down because they have been shown not to work in the real world. Sensible enough.

And then they will re-open as CBT and GET centers, because the research claims that CBT and GET work :meh:

Are they completely unable to get their heads out of their anal orifices long enough to stop reading the low-quality and badly spun BPS research summaries stored therein? Can they at least think about the issue rationally? Or even *gasp* read some real research?
I'd be curious if patients or patient groups have lobbied for clinics/services - it's a risky time lobbying for things as there's a good chance health services won't offer doctor-led services that can involve a lot of testing and drug treatments, that health services may not want to pay for at the moment for various reasons.

Also, sometimes if patients go to politicians, politicians want to do/achieve "something".