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Tate Mitchell <[log in to unmask]>
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Tate Mitchell <[log in to unmask]>
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Fri, 17 Sep 2010 03:52:51 -0500
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According to the UK PACE trial protocol, Cognitive Behavior Therapy is
being offered as a 'treatment' for CFS "based on the illness model of
fear avoidance, used in the three positive trials of CBT [18,25,26].
There are three essential elements: (a) Assessment of illness beliefs
and coping strategies, (b) structuring of daily rest, sleep and
activity, to establish a stable baseline of general activities, with a
graduated return to normal activity, (c) collaborative challenging of
unhelpful beliefs about symptoms and activity. Both therapists and
participants will receive separate manuals."

Reference 18 above is listed as being- Prins JB, Bleijenberg G,
Bazelmans E, Elving LD, de Boo TD, Severens JL, et al.: Cognitive
behaviour therapy for chronic fatigue syndrome: a multicentre
randomised controlled trial. Lancet 2001 , 357:841-847.

A recent meta-analysis of three Dutch CBT trials, which includes the
Prins 2001 Lancet study referenced above, states- "treatment was based
on the manual of CBT for CFS described in detail by Bleijenberg et al.
(2003)", which is referenced as the following- Bleijenberg G, Prins
JB, Bazelmans E (2003). Cognitive-behavioral therapies. In Handbook of
Chronic Fatigue Syndrome (ed. L. A. Jason, P. A. Fennell and R. R.
Taylor), pp. 493–526. Wiley: New York

Therefore it would seem safe to state that the "manual of CBT for CFS"
by Bleijenberg et al. located in the Handbook for CFS could accurately
be described as forming the theoretical framework for the CBT offered
in the PACE trial. The manual also states "The first treatment
protocol developed by our own research group has much in common and
can best be compared with the programs by Sharpe and Deale (Prins &
Bleijenberg, 1999). The treatment consists of 16 sessions. The initial
sessions deal with impeding cognitions. Subsequently, patients
practice recognizing and respecting limits, and finally, increasing
the activity levels becomes the central component. The main goal of
the treatment is full recovery, the supplementary objective being
return to the workplace."

As Michael Sharpe is a primary author of the PACE trial, this would
further link the two.

The manual is posted in whole below.

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

CHAPTER 23
Cognitive-Behavioral Therapies
GIJS BLEIJENBERG, JUDITH PRINS, and ELLEN BAZELMANS

p.493

IN TWO SYSTEMATIC reviews (Reid, Chalder, Cleare, Hotopf, & Wessely,
2000; Whiting et al., 2001), cognitive-behavioral therapy (CBT) and
graded exercise therapy proved to be consistently effective treatments
for chronic fatigue syndrome (CFS). In this chapter, we first define
cognitive-behavioral therapy and explain what is known about the
indications and contraindications for its use in chronic fatigue
syndrome. The practice of CBT as an outpatient treatment is then
discussed in detail and is illustrated with two case studies. Pitfalls
for therapists and other ways of applying CBT are also discussed.

WHAT IS COGNITIVE-BEHAVIORAL THERAPY FOR CHRONIC FATIGUE SYNDROME?

Cognitive-behavioral therapy is a general psychotherapeutic method
directed at changing condition-related cognitions and behaviors. In
controlled studies, CBT has appeared to be effective in conditions
such as panic disorder, depression, obsessivecompulsive disorder
(OCD), and irritable bowel syndrome (IBS) (see, e.g., Greene &
Blanchard, 1994; Hawton, Salkovskis, Kirk, & Clark, 1989; Payne &
Blanchard, 1995; Van Dulmen, Fennis, & Bleijenberg, 1996; Vollmer &
Blanchard, 1998). Therapy is directed at specific cognitions and
behaviors relevant for each disorder, which implies that a clinician
would not use the same CBT for depression as for IBS or OCD. Thus, CBT
for CFS has to be directed at the cognitions and behaviors related to
that syndrome.

The absence of a somatic explanation for CFS does not exclude the
possibility that a somatic event may have triggered the symptoms.
Therefore, it is necessary to distinguish the factors initiating the
complaints, or symptoms, from the factors that perpetuate them.
Facilitating factors can also be differentiated. These factors make
people more vulnerable to the development of CFS. Little conclusive
knowledge is available about the facilitating and initiating factors.
In contrast, considerable data can be found about the perpetuating
factors in CFS. CBT is aimed at changing these latter factors.

p.494

DEVELOPMENT OF A MODEL FOR PERPETUATING FACTORS IN CFS

Vercoulen et al. (1998) have developed a model of perpetuating factors
in CFS. In this model (Figure 23.1), investigators tested to what
extent chronic fatigue could be explained by somatic attributions,
sense of control over symptoms (selfefficacy), physical activity
level, functional impairment, focussing on bodily symptoms and
depression. It was found that depression could not be fitted into the
model. Depression does not seem to play an important role in
perpetuating the complaints. This is in agreement with findings in
follow-up studies on CFS (e.g., Clark et al., 1995). The other factors
could be included in the model on the basis of structural equation
modeling. The model appeared to explain fatigue in CFS patients but
did not explain fatigue in MS patients (Vercoulen et al., 1998). A
strong focus on bodily symptoms, low levels of physical activity, and
a poor sense of control contribute to increased severity of the
fatigue and functional impairment. Strong somatic attributions have
only an indirect influence on fatigue, via lower levels of physical
activity.

Most factors in the model of perpetuating factors in CFS have been
found in other studies as well (e.g., by Heijmans 1998; Wessely,
Hotopf, & Sharpe, 1998). Recently, the model was tested on new
longitudinal data, and again it appeared to fit. Because the model
shows causal relations between perpetuating factors and complaints, it
is an appropriate basis for treatment. However, the model also has
limitations. First, it does not include factors like social support
and fear of symptoms of fatigue. Second, the model mainly applies to
patients with a long duration of complaints. As yet, not all aspects
of the model have been shown to be valid for CFS patients of
relatively short duration. It is conceivable that patients do not
start focusing on bodily symptoms until the complaints have existed
for a longer period. The development of these perpetuating factors
over time is not clear.

[Figure 23.1 Model of CFS, Developed and Tested with LlSREL. Source:
"The persistence of fatigue in chronic fatigue syndrome and multiple
sclerosis: Development of a model," by J. H. Vercoulen, O. R. Hommes,
C. M. Swanink, P. J. Jongen, J. F. Fennis, J. M. Galama, et aI., 1998,
Journal of Psychosomatic Research, 45, pp. 507-517.]

p.495

The model of perpetuating factors in CFS has been the basis for the
development of the cognitive-behavioral treatment (Prins &
Bleijenberg, 1999; Prins et al., 2001). Because of the central role of
cognitions, also in relation to activity, the treatment starts with
changing cognitions. Complaint-enhancing cognitions that patients
manifest include a strong focus on bodily symptoms, a decided tendency
to attribute their symptoms to physical causes, and a belief that they
are powerless and cannot do anything about the symptoms. The CBT
protocol for CFS is directed at decreasing somatic attributions and
the patients' focus on bodily symptoms, increasing their sense of
control over their symptoms, and restoring the balance in activity
patterns.

CONTROLLED STUDIES INTO CBT FOR CFS

In the early 1990s, clinical trials with CFS patients revealed that
cognitive and behavioral interventions had a favorable effect on CFS
symptoms. The first uncontrolled study was published about the effect
of CBT in 27 CFS patients (Butler, Chalder, Ron, & Wessely, 1991). The
treatment was aimed at enhancing selfefficacy and encouraging
activities that patients had been avoiding because of the complaints.
The treatment proved effective in 22 of the participating patients. A
4-year follow-up revealed that the effect was still present in 80% of
the patients (Bonner, Ron, Chalder, Butler, & Wessely, 1994).

Another open study conducted during the same period found that CBT was
effective in reducing depressive complaints, but not the
fatigue-related symptoms. In this particular CBT, however, the focus
was on acceptance of the CFS-related limitations and not on activity
enhancement (Friedberg & Krupp, 1994). Subsequently, investigators
carried out randomized controlled studies into the effects of CBT, and
these were evaluated in several review studies (Price & Couper, 2000;
Reid et al., 2000;Whiting et al., 2001).

In the first controlled study (Lloyd et al., 1993), both CBT and
medical treatment were combined with immunotherapy or placebo. Thus,
treatment was never stand-alone CBT. The therapy consisted of a mere 6
sessions of 30 to 60 minutes during which the patients were encouraged
to be more active in the home and an attempt was made to reduce
feelings of helplessness. As was to be expected, results were
disappointing. None of the groups treated had a larger effect than
those receiving the standard medical treatment. The CBT was too short,
and the combination with immunotherapy or placebo aggravated the
somatic attributions instead of reducing them.

Sharpe et al. (1996) compared CBT with a control condition without
treatment. The treatment consisted of 16 weekly sessions and was aimed
at cognition changes and a gradual increase in activity. The controls
only received standard medical care, mainly consisting of reassurance
that no organic disease had been diagnosed. Compared with the
controls, a significantly greater number of patients who had received
CBT improved as far as their physical functioning was concerned at
12-month follow-up. Improvement mostly occurred during the follow-up
period, which can be best explained from the relatively short
treatment duration. However, since the control group did not receive
any treatment, it remained unclear whether the treatment effect was to
be attributed to elements of the CBT or to nonspecific factors such as
attention by the therapist.

This aspect was controlled for in the study by Deale, Chalder, Marks,
and Wessely (1997) in which they compared CBT and relaxation therapy.
Both treatments

p.496

consisted of an average of 13 sessions spread over 6 months. The CBT
was educational with an emphasis on behavioral changes. Not until the
patient had made certain advances in activity levels was cognitive
restructuring started. The relaxation therapy entailed progressive
muscle relaxation, visualization, and exercises inducing rapid
relaxation. Sixty CFS patients were randomly assigned to CBT or
relaxation therapy. A drawback of this study was that the same
therapist treated all the patients. The CBT proved to have a
significantly greater effect than the relaxation therapy and was still
present at a 6-month follow-up. After conclusion of the CBT, the
somatic attributions were unchanged, and they were not found to
predict a poorer outcome. Attitudes toward the avoidance of activity
had changed in the CBT group, but not in the control group. This
change coincided with a positive treatment outcome (Deale, Chalder, &
Wessely, 1998). The condition of the immune system did not change
during the treatment, nor was it predictive of improvement following
CBT (Peakman, Deale, Field, Mahalingam, & Wessely, 1997). At five
years follow-up, lasting benefits of CBTwere found in the patients of
this study (Deale, Husain, Chalder, & Wessely, 2001).

Wearden et al. (1998) studied the effects of the antidepressive drug
fluoxetine or a placebo both with and without graded exercise therapy.
No placebo was offered for the graded exercise therapy, as was
provided in the study that follows. Of the 136 patients, 96 completed
the 6-month program and could be included in the assessment. There
were more dropouts among those who had been prescribed graded exercise
therapy. Merely one-third of the patients completed this 6-month
program. Nevertheless, graded exercise therapy showed significant
improvement in fatigue symptoms and functional impairments, whereas
the effect of fluoxetine was not significant.

To investigate whether gradually increasing the levels of physical
activity alone suffices in treatment of CFS patients, Fulcher and
White (1997) compared graded exercise therapy with a treatment
combining flexibility and relaxation sessions. Whereas the rationale
for most types of CBT for CFS is fear and avoidance of activity, the
treatment proposed by Fulcher and White is based on a physiological
model of deconditioning. For 3 months, their patients worked on their
physical condition on a weekly basis. The gradual increase of physical
activity resulted in a significantly greater number of self-reports
claiming improvement than the combination of relaxation and
flexibility exercises. Whether this was a sustained effect could not
be established because, following the study, over half of the controls
also received graded exercise therapy.

The first treatment protocol developed by our own research group has
much in common and can best be compared with the programs by Sharpe
and Deale (Prins & Bleijenberg, 1999). The treatment consists of 16
sessions. The initial sessions deal with impeding cognitions.
Subsequently, patients practice recognizing and respecting limits, and
finally, increasing the activity levels becomes the central component.
The main goal of the treatment is full recovery, the supplementary
objective being return to the workplace. This treatment protocol was
tested in a randomized controlled trial in 270 CFS patients (Prins et
al., 2001). CBT was compared with two conditions: guided support
groups and natural course. CBT proved to yield significantly greater
effects on fatigue symptoms and functional impairments than the other
two conditions. One of the most noteworthy aspects of this study was
that therapists who had no prior experience with CBT for CFS
administered the therapy, which implies that this type of CBT is
transferable.

p.497

Seen in a 4-year perspective, CBT as applied in this study proved to
be costeffective (when productivity costs were taken into account)
compared with natural course. However, the treatment protocol was not
effective for all patients. In contrast to the relatively active CFS
patients, who specifically benefited from the treatment, the patients
with a low or passive activity pattern hardly did. The nature of the
first protocol may explain this finding. Learning to cope with
limitations is of little relevance to a group of patients who already
are extremely low in activity. This method strongly reinforces passive
CFS patients in their inactivity. In addition, the protocol paid too
little attention to those cognitions that maintain the low levels of
activity in passive CFS patients. The cognition that activity
negatively affects the symptoms leads to a fear of activity and a fear
of aggravated complaints, which both become debilitating factors in
the activity-enhancing stage of the program.

Based on these findings, and in addition to the treatment protocol
evaluated in the preceding study (Prins et al., 2001), a second
treatment program was developed specifically targeting CFS patients
with a low activity pattern. This second protocol has since been amply
applied in clinical practice and is presently being tested. Both
treatment programs are described later in this chapter.

Powell, Bentall, Nye, and Edwards (2001) examined the effectiveness of
shorter treatments. In their program, all CFS patients were given the
following explanation for their complaints. Prolonged decrease in
activity has led to a deterioration of the physical condition, both at
the cardiovascular and muscle level. This gives rise to complaints,
even at a low level of activity, that are aggravated by
desynchronization of the circadian rhythm. A gradual increase in
activity may turn this negative, downward spiral into an upward one.
In this way, the patients were encouraged and motivated to gradually
expand their activities. The patients, who had all received the same
explanation, were randomized over a control group receiving
standardized medical treatment and three treatment conditions ranging
from minimal to maximal intervention: 7 sessions; 12 sessions, of
which 9 were by telephone; and 15 sessions, of which 5 were by
telephone. At a 12-month follow-up, the patients in the 3 treatment
conditions were found to have improved significantly more in their
physical functioning and fatigue symptoms than the controls. There
were no differences between these 3 groups. It was concluded that CFS
can be successfully treated in fewer sessions. The treatment in this
study was administered by a single experienced therapist, which does
not lend weight to the conclusions drawn and does not indicate whether
a similar result could have been achieved had several therapists
participated. Notwithstanding this drawback, the findings from this
study are in line with our clinical experience that, compared with
less experienced counselors, skilled therapists need fewer sessions to
achieve positive results with patients suffering from CFS.

ASPECTS TO CONSIDER BEFORE STARTING CBT

ANALYSIS OF THE COMPLAINTS

[Table 23.1 lists questions that can be helpful in the analysis of
chronic fatigue. Symptoms are addressed in a very concrete way. It is
always helpful to ask patients to describe a normal day (e.g., the day
before), and to describe what they do and do not do between the moment
they get up until the moment they go to bed.]

p.498

Table 23.1
Analysis of Complaints
--------------------------------------------------------------------------------------------------------------------------------------------
Questions to Help Analyze Chronic Fatigue

Dimension: Somatic
• What are the patient's complaints (symptoms)? What are the
associated functional impairments?
• How does the patient spend the day and how do the complaints
manifest themselves in the course of the day (description of a normal
day)?
• Is this description exemplary of other days? Are there any
fluctuations in the occurrence of the complaints?
• When did the complaints mentioned first manifest themselves? In what way?
• Has the patient tried to find (professional) help?

Dimension: Cognitions
• Is the patient satisfied with any physical examinations that have been given?
• What are the patient's views on the causes of the complaints?
• Does the patient see other ways of influencing the complaints?
• Does the patient have a tendency to catastrophize the complaints?
• What views does the patient have on CFS?
• What is the patient's attitude regarding his or her complaints?
• What is the patient's attitude toward a psychological intervention?

Dimension: Emotions
• Does the patient have any feelings of anxiety that the complaints
will get worse?
• Is the patient afraid to undertake activities?

Dimension: Behavior
• What medication or diets is the patient on, and what other
treatments is the patient undergoing at this moment?
• What does the patient do to prevent complaints from getting worse?
• What activity pattern is typical for this patient (predominantly
passive; both active and passive at times, and subsequently passive;
still relatively active)?
• What activities does the patient no longer undertake due to the complaints?
• What about the patient's sleep pattern?
• Do the complaints affect the patient's concentration, memory, or
other mental activities?
• Do the complaints influence the patient's social activities?
• What were the patient's occupational activities? Since when has the
patient stopped working?
• What type of benefit does the patient receive (social, unemployment,
or disability)?
• Is the patient involved in any legal procedures in relation to benefits?

Dimension: Social Environment
• What effects do the patient's complaints have on his or her social
environment (work, family, or social circle)?
• How do the patient's family members (spouse) react to his or her complaints?
• What are their ideas about the complaints?
• How do they react when the patient is affected by the complaints?

p.499

Table 23.1 Continued
Questions to Help Analyze the Patient's Work Situation

Does the patient still hold a job? If so, what kind of work does it
involve and for how many hours?
Has the patient's work situation changed as a result of the fatigue?
When was the last time the patient worked? When did the patient stop working?
Does the patient still see (former) colleagues from work?
Is there any chance for the patient to return to the (former) job?
Does the patient think his or her employer will be willing to
cooperate in this matter?
Are there any problems involving medical examination authorities?
What is the patient's financial status or prospect in this respect?
Has the patient lodged any legal claims or started occupational
procedures in relation to the CFS?
--------------------------------------------------------------------------------------------------------------------------------------------------------------------------

In doing so, the therapist can get an idea of the patient's physical,
mental, and social activities and impairments. Job histories can also
provide insights. Is returning to the same job a possibility? Are
Social Security or disability benefits being received, or are legal
procedures underway to get financial benefits Furthermore, patients'
expectations are important. What is their attitude toward CBT? Are
patients convinced that they have been sufficiently examined
somatically? How strong are the somatic attributions? Are patients
prepared to consider their complaints in a nonsomatic way? What about
their self-efficacy? It is useful to invite a patient's spouse for the
first interview. The partner not only can give hetero-anamnestic
information but also can learn about the rationale of the treatment.

At this stage, instruments to assess the degree of fatigue are useful
(see, e.g., Chalder Fatigue Scale, Chalder, Berelowitz, Pawlikowska,
Watts, & Wessely, 1993; Checklist Individual Strength, Vercoulen et
al., 1994;Beurskens et al., 2000; Bultmann et al., 2000; Shortened
Fatigue Scale, Alberts, Vercoulen, & Bleijenberg, 2001). Other
instruments can assess the extent of the functional impairment (see,
e.g., Sickness Impact Profile, Bergner, Bobbit, Carter, & Gilson,
1981;SF-36,Ware & Sherbourne, 1992).Additionally, clinicians can
assess patients' sense of control over symptoms (self-efficacy; Prins
et al., 2001), causal attributions (Prins et al., 2001), and their
focus on bodily symptoms (van der Werf, de Vree, van der Meer, &
Bleijenberg, 2002; Vercoulen et al., 1998).

ASSESSMENT OF THE ACTIVITY PATTERN

The activity pattern of the patient determines the type of CBT that
should be used. A diagnostic assessment is necessary to establish this
pattern. An actometer or accelerometer is best suited for this purpose
and allows the easy and accurate measurement of activity levels
(Tyron, 1991). An actometer is a motion-sensing device that can record
and quantify human physical activity. It is small and light and can be
worn around the ankle or the wrist. Its small size makes the actometer

p.500

suitable for long-term and continuous motion recording. A typically
passive patient has an average daily activity score, recorded by an
actometer around the ankle, below the norm score for CFSpatients (=
66) on 11 or 12 of a total of 12days (van der Werf, Prins, Vercoulen,
van der Meer, & Bleijenberg, 2000). However, since many therapists do
not have access to an actometer, they must determine the activity
pattern by means of an anamnesis, which is a less accurate and more
complicated method. Although nearly all CFS patients claim that they
hardly do anything anymore, when the therapist seriously questions
them about their activities, the distinction between relatively active
patients and those with a low activity pattern usually becomes much
clearer. Talking through a normal day with the patient allows the
therapist to derive the degree and extent of the patient's activity.
The following questions can help determine whether the patient is
passive or relatively active: "How much time do you spend lying down
on your bed or couch each day? How often (per day/per week) do you
leave the house? For how long? What is the maximum time you spend
walking at a stretch?" The patient with a low activity pattern spends
a great deal of time lying down, does not walk for long periods, and
goes out infrequently. The answers to the last two queries also depend
on the support the patient receives. Thus, a CFS patient who lives
alone and does not get any help is compelled to be active enough to go
out for food and other necessities.

As stated, the patient's activity pattern determines which protocol to
use for treatment. The daily records that the patient keeps later on
during the treatment can be useful for testing this initial pattern as
well as for determining the definitive pattern.

PSYCHIATRIC DISORDERS

Another diagnostic task is to establish whether the patient has any
serious psychosocial or psychiatric problems. On average, such
problems are found in only half of the patients at most (Prins,
Bazelmans, van der Werf, van der Meer, & Bleijenberg, 2002).A
discussion of the psychosocial aspects of the fatigue symptoms may
suggest possible psychosocial or psychiatric problems. If the patient
has seen a psychologist, psychiatrist, or social worker in the past,
it may make it easier to discuss any such problems in more detail. If
psychosocial or psychiatric problems are found to be present, their
relationship with the chronic fatigue needs to be determined; that is,
whether the problems result from the fatigue syndrome (consequences)
or are facilitating or initiating factors (antecedents). Sometimes the
therapist finds no direct link with the development or onset of the
CFS.

If the psychosocial or psychiatric problems are mainly consequential
to the syndrome, CBT can be initiated without delay. These
consequential problems for example, awkward family interactions that
stem from having a sick patient in the home-are resolved in the course
of the treatment.

If the problems are antecedent to the CFS, they usually become a
constituent part of the CFS-specific CBT.Since the problems have been
proven to be directly associated with the fatigue, as is the case with
high achievers or patients with a premorbid subassertiveness, they
obviously also need to be dealt with to guarantee a successful
treatment outcome. In certain cases, the established psychosocial or
psychiatric problems may not be associated with the CFS.

p.501

In most cases, the treatment opted for will entail a CFS-specific CBT
in which the therapist pays explicit attention to the indicated
problems. Proven mental problems are seldom a reason to refrain from
prescribing CBT for CFS. In isolated cases, it will be decided to
treat the indicated psychosocial or psychiatric problems separately at
a later stage. By contrast, the severity of the comorbidity may
sometimes make it necessary to treat the comorbid symptoms prior to
the CBT.

CLAIMS FOR DISEASE-RELATED BENEFITS

Studies into CBT for CFS have shown that patients who are involved in
legal procedures in connection with their illness (e.g., insurance
issues and/or invalidity benefit claims) should not be offered CBT
(Prins, Bazelmans, et al., 2002) since it has been established that
such patients have a significantly poorer treatment outcome than
patients to whom this does not apply. During such procedures, patients
need to convince the other party of the severity of their complaints
and impairments, and this does not accord with a treatment aimed at
improvement or recovery from the symptoms involved. Based on these
findings, CFS patients still actively pursuing such legal procedures
are no longer prescribed CBT in the clinical practice. Another
important and perhaps obvious contraindication for CBT is the
patient's motivation. If a patient does not want CBT and also cannot
be motivated by the referring party or therapist, prescribing the
therapy is useless. This holds for both CFS-related and other
complaints. It is out of the question to try to make CFS patients
comply with CBTtreatment by threatening to cancel their disability
benefit; instances of such threats have been reported.

PRACTICE OF CBT FOR CFS

In this section, we first discuss the differences between the two
types of CBT protocols (for low-active or passive and relatively
active CFS patients) in general terms. Techniques to motivate the
patient for the treatment are then described including how to create
the right conditions for treatment and how to describe and explain the
modus operandi. In addition, suggestions for planning other concurrent
treatments and for formulating the aims of the treatment are
discussed. Following this general explanation of the model, the roles
of cognitions and behaviors in relation to the fatigue are outlined in
the context of the different complaint analyses for low-active and
relatively active CFS patients. And finally, the treatment objectives
are further specified: return to work and/or other personal goals. The
preceding steps apply for the treatment of both passive and relatively
active CFS patients. Table 23.2 provides an outline of this program.

DISTINCTION BETWEEN RELATIVELY ACTIVE AND PASSIVE CFS PATIENTS

If the patient's activity pattern has earlier been assessed on the
basis of an anamnesis and not with an actometer, the patient's daily
records may help the therapist identify the definitive activity type.
Relatively active patients still are able to do some paid work for
several hours per day, do some domestic chores, and are socially
active to some extent or engage in certain leisure activities or
hobbies. By contrast, passive patients mainly spend a lot of time in
bed, seldom leave the house, and undertake few or no household tasks.
Relatively active CFS patients

p.502

Table 23.2
Outline of the Treatment
------------------------------------------------------------------------------------------------------------
Introduction and Intake

Motivating the Patient for the Treatment
• Explanation of modus operandi and rationale of the treatment to
patient and spouse.
• Precondition:
  -No other concurrent treatments.
• Aim:
  -Full recovery.
• Explanation of the treatment model:
  -Distinguishing initiating and perpetuating factors.
  -Role of cognitions and behaviors (thoughts and actions).

Defining Perpetuating Factors
• Determining and defining the activity level.
• Determining and defining fatigue-related cognitions.
• Defining the treatment goal (work, other personal targets).

Treatment
Relatively Active CFS Patients
• Explanation of perpetuating factors:
  -Nonaccepting cognitions.
  -Activity peaks.

Challenging Complaint-Enhancing Cognitions
• Nonacceptance, high demands, not respecting limits.

Balance between Rest and Activity
• Peak-stop exercises:
  -Physical, mental, social.
• Setting a base level.
• Changing the attitude toward the environment:
  -Learning to communicate limits.

Systematic Increase of Activities
• Physical activity program:
  -Graded and systematic raise in duration of frequent activities
(walking or cycling)
• Action plan for work-resumption or for achieving personal goals,
specification and realization.

Passive CFS Patients
• Explanation of perpetuating factors:
  -Anxious cognitions.
  -Inactivity.

Challenging Activity-Impeding Cognitions
• Fear of increase in complaints.

Systematic Increase of Activities
• Physical activity program:
  -Raising frequency and duration of activities gradually and
systematically (walking or cycling).
• Mental activity program:
  -Systematically raising the duration 'of reading, time at the
computer, and so on.
• Social activity program:
  -Graded expansion of daily, social activities (visits, phone calls).
• Action plan for work-resumption or for achieving personal goals,
specification, and realization.
• Changing the attitude toward the environment:
  -Learning to expand limits.
---------------------------------------------------------------------------------------------------------------------

p.503

mostly have cognitions that entail making high demands on themselves,
wanting to do (too) much, and refusing to accept the current
situation. Low-active CFS patients primarily exhibit anxious
cognitions about the negative effect that activity may have on their
symptoms.

In the initial stage of the treatment of the relatively active
patient, first learning to recognize and accept the current state of
fatigue and functional impairment is central. The sessions that follow
are aimed at reducing the level of activity and learning to respect
the limitations. After achieving this balance, the clinician and
patient start to build up the level of activity. Passive or low-active
patients, constituting about 25% of all CFS patients, on the other
hand, already have such a low activity level that reducing it any
further and reinforcing their need to respect their limitations can
only be counterproductive. Because these patients are afraid of
aggravating their symptoms, they tend to cut down on as many
activities as possible almost every day. In their case, the essence of
the treatment is to commence with a systematic activity-building
program as soon as possible.

EXPECTATIONS OF THE TREATMENT AND THE ROLE OF SELF-ACTIVITY

To increase the chance of a successful outcome, a key aspect of the
CBT is creating the right treatment conditions. In this context, the
patient's attitude toward the treatment first needs to be established.
Frequently, patients adopt a passive, wait-and-see pose: "Okay, show
me your [the psychologist's] tricks first." This attitude may
originate from the referral process. When patients feel that they have
not received a thorough physical examination, they may not be
receptive to a cognitive-behavioral approach. To resolve this issue,
the therapist might ask these patients what additional diagnostic
tests should have been conducted and whether they broached their
concerns during the consultations with their physician. Patients who
remain dubious should have the option to discuss the matter once more
with their physician. Our experience has been that patients who have
such a consultation come back to us with much stronger motivation.

CFS patients often have low expectations about a psychological
intervention. Skepticism is the norm: "There's nothing wrong with me,
mentally, so what am I doing here with this psychologist?" Changing an
opinion like this can be difficult. After getting this attitude on the
table for discussion, the therapist can explain to the patient how
psychological factors-thoughts, feelings, and behaviors-may contribute
to physical symptoms in general and CFS in particular.

At this stage, it is also worthwhile to explain the role of
self-activation in the treatment. It helps clarify patients'
expectations and encourages their participation during the treatment.

NO OTHER TREATMENTS DURING CBT FOR CFS

Patients afflicted by physical symptoms and strong physical
attributions tend to place the solution to their problems outside
themselves. They search vigorously for counselors who will cure them
of their complaints. Frequently, for a lengthy period and in vain,
they have been on medications or special diets in an effort to
alleviate their symptoms.

The therapist must first ask the patient to report all current
treatments, of whatever nature. The therapist then explains that it is
understandable that the

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patient has tried each and every means available to get rid of the
complaints. However, to ensure success, it is now essential to give
full attention to the CBT and to refrain from any concurrent
treatments. It is best for the patient to complete one treatment
before trying any alternative treatments. Pivotal to treating CFS with
cognitive-behavioral therapy is that patients be able to attribute all
of their progress to changes in their cognitions and behaviors. When
patients undergo two treatments simultaneously, it is difficult to
prove which of the two interventions is responsible for the
improvements. Therefore, the therapist should ask patients in clear
terms whether they are prepared to terminate other ongoing treatments,
and if so, when. Only after patients have complied with this
requirement can they begin treatment with CBT.

However, a patient who has been on a particular diet for a long
period, without the involvement of a professional, does not need to
stop that diet before CBT. Since the diet apparently has no effect on
the symptoms, it can be seen as a stable factor that is unlikely to
interfere with the therapeutic process.

GOAL SETTING AND EXPLANATION OF THE TREATMENT

Objective: Recovery  The aim of the treatment is to modulate the
fatigue, thereby reducing the symptoms and enabling patients to return
to work or resume other normal, daily activities. Recovery is the
therapist's goal (Prins, Bleijenberg, & van der Meer, 2002). Recovery,
or cure, should be interpreted as meaning that the patient's self-view
is no longer that of a patient suffering from CFS but is that of a
healthy individual. After all, healthy people at times also feel tired
or experience pain. Recovery, however, does not imply a return to
one's old self. Before the onset of CFS, the extremely active lives
that some patients led may even have contributed to the development of
their symptoms. Helping patients to look on and treat their body in a
different way automatically entails that they will never feel the way
they did before the illness. Recovery in this context means adopting a
new lifestyle, in which patients are aware of their body's normal
limitations.

The therapist describes the intended recovery in such a way that it
becomes a real and feasible target for the patient. Together, they
inventory the activities that the patient needs to be able to do again
in order to feel like a healthy person. Try to prevent the patient
from becoming discouraged or debilitated by anxiety or the notion that
the set targets are no longer obtainable or that recovery is still a
long way off. Recovery may be formulated in terms of the number of
hours spent working at one's job, doing the shopping, preparing meals,
taking the kids to school, playing sports, reading, visiting
friends,and so on. This way, recovery no longer is a general and
abstract goal that the therapist has established but becomes a
realistic target that the patient, with the help of the therapist, can
work toward achieving. These goals as well as the steps (subtargets)
to achieve these objectives are formulated during the initial CBT
sessions. Here, relatively active CFS patients tend to set themselves
targets that are too high, whereas low-active patients aim too low.

Objective: Return to Work  Before a return to work is possible, the
therapist and the patient need to fully clarify and discuss the
(former) work situation and financial status in relation to medical
evaluations and benefit claims. Recovery from CFS may have
considerable impact on any future work and/or benefits. It is
important for patients to be aware that they will eventually lose (the
right to) any disability

p.505

payments in case of recovery. Furthermore, if they do not succeed in
finding a new job, their financial situation may become even worse.
This is why it is necessary to discuss patients' work expectations at
an early stage. When finding a job is likely to pose serious problems
and a patient has become dependent on benefits, the chances of
recovery or improvement are slim. It is therefore important to ask
patients whether they anticipate that recovery will have negative
financial consequences. Financial consequences or the wish not to go
back to work or to cut down on hours to have more time for housework
or leisure activities almost certainly will stand in the way of
recovery. It is necessary to formulate alternative personal objectives
for the final goals if return to work is not an option, or if the
patient only wants to work part-time on recovery despite the possible
financial consequences. These may involve being able to fulfill
domestic or caregiver duties, attending training courses, finding work
as a volunteer, or performing other daily tasks. The goals are
formulated in such a way that patients who have actually achieved them
can perceive themselves as healthy individuals.

HOMEWORK ASSIGNMENTS

Bydoing homework assignments effectively, patients learn new
cognitions and behaviors. At the start of each session, the patient
and therapist together can select specific cognitions and behaviors
from the assignments to discuss during that session. Prior to the
session, the therapist should try to assess-based on the patient's
perpetuating cognitions and behaviors-what these assignments can
accomplish and which aspects should receive the most attention.

When a patient finds a certain assignment too taxing, try to determine
the specific problem. How does the patient perform the task? If
possible, have the patient formulate a feasible alternative. It is the
patient who sets the priorities. Emphasize that it is important to
complete the homework assignments in ways that can be sustained over
time.

EXPLANATION OF THE MODEL OF PERPETUATING

The patient learns, in broad terms, the distinction between initiating
and perpetuating factors. The therapist explains that, instead of
looking for causes for the complaints, which is no longer useful at
this stage, it makes far more sense to focus on ways to resolve them.
("How do I get rid of them?")

The following issues may be raised: What has caused the complaints is
not known. What has become clear is that at present the symptoms
cannot be explained by a persistent virus, nor by a dysfunction of the
immune system, digestive disorders, or other physical causes. The key
question therefore should not be "What causes the complaints?" but
instead, "What can I do to get rid of them?" The onset of the fatigue
may have been somatic, but this is no longer relevant. Explain that it
is far more useful for the patient to look for ways to reduce the
symptoms.

To better relate to the patient's perceptions when discussing
cognitions and behaviors, it is helpful to employ the terms and
expressions the patient uses. The fatigue-related cognitions and
behaviors the patient has mentioned earlier may be used to explain
their relation to the patient's symptoms. Following this explanation,
the therapist assigns a self-observation task designed to increase the
patient's understanding of those cognitions and behaviors that affect
the fatigue.

p.506

TREATMENT OF THE RELATIVELY ACTIVE CFS PATIENT

CHALLENGING COMPLAINT-ENHANCING COGNITIONS

When treating perpetuating cognitions, it is important not to simply
challenge any single cognition but to find the leitmotiv for all of
them. Certain cognitions and particular behaviors will recur
regularly. The patient's self-observations form the basis for an
inventory of those beliefs. These self-observations also allow the
therapist to detect any unexpressed cognitions in various situations.

The therapist explains how the patient's cognitions and behaviors may
influence the fatigue symptoms. Without expressing any judgment as to
whether these are right or wrong, the therapist asks whether the
patient recognizes the effects of cognitions and behaviors on the
fatigue. This helps the therapist to relate to the patient. The
patient may see things differently and should express those views.
Again, explore whether the cognitions and behaviors the patient
mentions contribute
to or alleviate the fatigue.

The therapist challenges the most significant and most frequently
recurring cognitions. The easiest way to do this is by asking the
patient whether a particular belief helps reduce the complaints.
Beneficial or helpful cognitions lead to a reduction of the fatigue;
impeding cognitions enhance the symptoms. If the therapist does not
agree with the patient about whether a particular cognition is
helpful, they should try to determine the exact effect this cognition
has on the fatigue. Examples of impeding cognitions are "Will this
never end?" "I simply can't go on like this," "I should be able to do
this, for Pete's sake," and "It's not right that I have others do
everything for me all the time."

The patient can practice helpful cognitions at home; for example, "So,
okay, I feel tired right now. Well, it can't be helped. It's no use
worrying about it because this will only make me feel even more
tired." The patient can write down beneficial cognitions in the
self-observation list. This acceptance exercise may help the patient
think of other helpful cognitions: "I don't have to be able to do
everything," "Everyone has their limits, so this also holds for me,"
or "Even 'healthy people' have their limits as to what they can do and
these are different for everyone; and when these limits are lower than
you'd like, it doesn't mean you're sick."

RECOGNIZING AND RESPECTING LIMITATIONS

The therapist explains to the patient that not respecting personal
limits may negatively affect the complaints. It is wiser to stick to
one's limits initially and from there to work toward a gradual and
systematic expansion. Many patients exceed their limits to such a
degree that they cause or aggravate symptoms. In such cases, the
peak-stop exercise is recommended for a limited period. The exercise
is a short-term aid to bring down the patient's activity level and
prevent peaks in activity and the resultant fatigue. It helps set an
appropriate base level. It will make itself redundant because
eventually CFS patients, like healthy individuals, become able to have
activity peaks without negative consequences.

Some CFS patients tend to exceed their limits so frequently and to
such an extent that the negative effects do not manifest themselves
until after they have stopped their activities or even the day after.
Patients and therapists here need to try to find an activity level
that does not aggravate complaints. This allows patients

p.507

to determine the duration of their activities in advance. They are
taught to cease the activity in time to prevent any complaints from
manifesting themselves. At this stage of the treatment, the positive
cognitions of CFS patients often are not conducive to prevent
aggravating the fatigue: "I know that when I do too much today, I will
have to pay for it tomorrow, but at least I will have enjoyed myself
today." When discussing a timely cessation of activities, it is
important to make such cognitions explicit and to have the patient use
them during the peak-stop exercise. The therapist also needs to
closely monitor that patients who apply the peak-stop exercise do not
lapse into total inactivity and spend the entire day lying in bed or
on the couch. The exercise is about finding the right balance between
periods of rest and periods of activity. Figure 23.2 depicts the
optimal changes in activity level and limits aimed at during the
treatment that do not cause extreme fatigue.

ATTAINING AND MAINTAINING A BASE LEVEL

A proper application of the peak-stop exercise will allow the patient
to determine a base level. By base level, we mean the total activities
a person can do-spread over the day-without these causing extreme
fatigue. In determining this base level, both the therapist and
patient will get a clearer picture of what the patient's typical
activities are on a normal day. Base-level activities include actions
like getting up, taking a shower, getting dressed, preparing meals,
doing the shopping, tidying, doing the dishes, taking the kids to and
picking them up from school, spending time on domestic work or doing
paid work. Which activities to include in the base level depends on
the patient's personal circumstances, which differ from patient to
patient. Some may still be able to go out to work a few hours per day,
whereas others will have reached the base level after taking a shower,
getting dressed, and eating breakfast. The essence of a good base
level is that there are no activity peaks, nor activities that cause
extreme fatigue. Determining the base level is about finding out which
activities to include and how to spread them over the day. Activities
that result in extreme fatigue should be omitted unless they can be
divided and spread out. Furthermore, the base level should leave some
room for maneuver. A base level is inflexible if it means the patient

[Figure 23.2 Time Course of the Level of Activity before and during
the Treatment of CFS. Representation of the time course of the
activity level and the maximum activity level below which there are no
complaints. The figure shows the period before the start of the
treatment and the subsequent intented changes in these levels during
the course of the treatment of a relatively active CFS patient.]

p.508

must function at maximum ability all the time and any extra activity
will lead to extreme fatigue. Unexpected events or unforeseen
activities-so much a part of life-need to fit within the set level. In
addition, the base level needs to allow room for the activity program,
to be described later.

If, after several sessions, a relatively active CFS patient is still
seriously fatigued and has improved little since the start of
treatment, an evaluation of the base level may reveal that the patient
still does too much or for too long a period. The way the patient goes
about things (e.g., in a hurried, tense, or perfectionist manner) also
may explain the fatigue. Both instances warrant special attention and
need to be resolved.

THE BASE LEVEL AND THE SLEEP PATTERN

Many CFS patients are troubled by a disease-related desynchronization
of the sleep pattern. They tend to sleep long hours, sleep or lie down
frequently during the day, or cannot get to sleep at night even though
they are feeling extremely tired. Patients may believe that, since
they are so tired, they need a lot of sleep. However, sleeping often
or for many hours does not solve the problem and can even be
counterproductive. Some patients may feel the need to sleep late but
consequently will not be able to get to sleep at night, which disrupts
their sleep pattern. It is essential to try to normalize the sleep
pattern of these patients as quickly as possible. This implies going
to bed and getting up at fixed times and not taking naps during the
day. Establishing a regular sleep pattern also is an important element
of a patient's base level.

THE BASE LEVEL AND WORK

There are patients who still work, usually part-time. It is necessary
to establish the extent to which the job can be fitted into the base
level. Patients who are financially dependent on their job may be
anxious about temporarily working fewer hours for fear of losing the
job. Together with the patient, try to determine whether the job is
compatible with the agreed-on base level and look again at how the
patient fulfills tasks. If the job does not exceed the established
limits, continuing at work may be useful because it is a way to
evaluate how the person deals with work. Is the patient always pressed
for time, always busy? Is there hardly any time for a break? Decide,
together with the patient, whether the work approach is adequate or
needs adjustment.

After explaining and talking through the base level, the therapist
asks the patient to try to determine a base level and to make notes of
daily activities, the results of which they will evaluate during the
next session. Usually, patients are asked to put their base level down
on paper. In the course of the treatment, patients try to reduce their
daily activities and learn to put the base level into practice.

THE BASE LEVEL AND THE ENVIRONMENT

During the sessions involving the base level, it may be useful to talk
about the possible consequences this base level can have on the
patient's environment. Since
CFS patients, in the context of the base-level program, will try to
reduce their activities, this may elicit negative reactions from the
patient's environment. The

p.509

patient no longer meets (presupposed) requirements and no longer lives
up to perceived expectations. Generally, the best way to resolve this
matter is to involve those in the patient's environment in the
treatment and to jointly seek temporary solutions for any emerging
problems. Involving the spouse or significant others may help the
patient comply with the base level.

GRADED ACTIVITY PROGRAM

Activities can be divided into three categories: physical, mental, and
social. In nearly all cases, treatment starts with a physical activity
program. The patient selects a simple physical activity to perform
every day and records its duration. The aim is to have the patient
gradually and systematically increase the frequency or duration of
this particular activity.

Walking and cycling are typical examples of such an activity. Swimming
is less suitable since it is difficult to perform on a daily basis and
involves many additional
actions, such as going to the swimming pool, finding a cubicle,
getting changed, and so on. The activity program needs to start at a
realistic, manageable level. In general, a relatively active CFS
patient starts with an activity that can be carried out twice a day
and whose duration can be increased every day.

The raise in the duration of the activity is usually expressed in
minutes. Starting with a 5-minute walk twice a day, the second day
this is raised to 6, and the third day to 7 minutes twice daily, and
so on. If necessary, the therapist may assure the patient that an
increase by 1 minute will not constitute any danger. There is no
strain, and there will be no negative consequences. An increase of 5
minutes per week is a cornmon target. This gives the patient the
opportunity to skip the activity once or twice or to refrain from
raising the walking time. The initial level will be realistic and
feasible, as has been agreed on by both patient and therapist. For
patients who think they can start with at least a 25-minute walk
(which IS cornmon assumption by relatively active patients), the
starting period should be set for half this estimated time at most. In
practice, patients are best advised to begin with a 10-minute walk
twice a day and should be asked to indicate the actual duration of
each activity on a chart.

In general, the activity program will involve a maximum of 60 minutes
of walking or cycling. By that time, most patients will have become
aware that they are capable of doing more without experiencing extreme
fatigue and that they recover faster than before. The original base
level has by then already been automatically enhanced. Gradually,
patients are now replacing walking or cycling with other activities.
These often involve going back to work or resuming activities that are
part of personal targets.

The activity program of relatively active patients is not about
improving their physiological condition since, as far as is known at
present, these patients are not deconditioned in a physiological sense
(Bazelmans, Bleijenberg, van der Meer, & Folgering, 2001). If this
were the aim, the program would have to take a different form. Rather,
the focus of the activity program is a gradual and systematic increase
in activity. Patients who experience being able to achieve this-if
approached in the right way-enhance their sense of control and this
helps bring about a positive selfefficacy.

By analyzing stagnations in the activity program, it is possible to
trace impeding cognitions or difficulties that patients might have
with respecting limitations.

p.510

It will also help patients feel (more) confident that they actually
are capable of these activities if they use positive cognitions and
learn how to carry out and distribute these activities. In addition,
mental and social activities may be systematically expanded to prepare
the patient for a return to work.

The activity program is likely to be fraught with difficulties.
Patients may not stick to the program consistently and may make
insufficient progress. A closer examination may reveal that they are
undertaking additional activities that do not form part of the base
level. That they have not complied with the agreed terms may imply
that the base level was set too high and, consequently, was not
flexible enough. In such cases, it is recommended to lower the base
level so that it once again leaves patients room for maneuver, after
which they can resume the program. Alternatively or additionally,
activity-related cognitions may be evaluated more closely. Usually,
this involves helping patients to get their priorities right. At this
moment, these should be with the treatment.

Another problem that may arise is that patients step up their
activities faster than has been agreed. The kick in the teeth usually
comes later: The patient can no longer sustain the program and either
stops altogether ("The program is no use") or does very little ("I am
at the end of my tether "). Once the setback has occurred, the only
way forward is to have the patient start from scratch, at the agreed
level, but this time with a safe daily buildup. If the problem is
detected before any real damage has been done, the motto is to get the
patient to slow down.

MAKING A WORK-RESUMPTION PLAN

From the very start of the treatment, the therapist makes clear that
full recovery, and a consequent return to work, is the ultimate goal.
Patients estimate how many hours they will be able to work after
recovery and which tasks they must be able to perform. Patients then
draw up a plan, detailing the necessary steps, which is presented to
the patient's employer, company doctor, and/or medical adviser of the
insurance company. When the activity program has reached the
appropriate stage, a start can be made toward accomplishing the
proposed steps. This plan of action also applies to those patients for
whom a return to work is not possible and who have set other, more
personal targets.

The guidelines for a work-resumption plan are similar to those used
for the graded activity program. Patients are to start from a
realistic and feasible base level, need to increase the activity level
gradually, and must stick to the program. Have patients work out the
plan in detail; have them indicate clearly, for each day that they
include in the scheme, whether they will go to work, how many hours
they will work, and which activities will be involved.

MAKING A PLAN FOR ACHIEVING PERSONAL GOALS

When a return to work is not an option, the action plan that is drawn
up stipulates how to achieve personal targets. The three steps are
comparable to those described for the plan aimed at a return to work:

1. Final goal. Which activities that will promote a self-perception of
being healthy does the patient want to be able to perform again?

p.511

2. Base level. What is the patient capable of at this moment without
resultant complaint-enhancing effects?
3. Graded activity plan. How can the patient build up the activity
level without negatively affecting the symptoms?

Also with this action plan, the patient is asked to commit the steps
to paper, taking into account any problems that may arise, and
compliance with the activity plan is evaluated. When a particular step
involves minor or one-off personal targets (e.g., a vacation), it may
suffice to try to anticipate likely problems.

TREATMENT OF THE PASSIVE CFS PATIENT

CHALLENGING ACTIVITY-IMPEDING COGNITIONS

In contrast to the relatively active CFS patients, the low-active CFS
patients have cognitions of fear based on their perception that
activity will enhance their symptoms. As a result, these patients
engage in little or no activity during the day and instead spend a lot
of time lying in bed or resting on the couch. Restructuring these
anxious cognitions is central in the treatment of the passive patient.
Furthermore, since the patient's environment is also often overly
concerned, it is essential to involve the patient's spouse, relatives,
or friends in the treatment. Patients may verbalize activity-impeding
cognitions such as "I can't do anything on my own anymore, and others
have to help me all the time" or "As soon as I start feeling tired or
start having pain I have to stop everything I'm doing." Compared with
relatively active patients, it is generally more complicated to
challenge the cognitions of passive patients without also involving
behavior. This is why it is beneficial to start the graded exercise
program as soon as possible. Positive cognitions such as the following
examples should be encouraged: "I will stop looking back to try to
find an explanation for my complaints; from now on I'm going to do
'something about them." "By raising the level of my activities step by
step, I will be able to push my physical capabilities even further."
"If I get complaints by being active, it doesn't necessarily mean that
I should stop doing what I'm doing; it's just a sign that it has been
some time since I've been active, and my body simply needs to get used
to it again." Again, at this stage, the therapist should ask patients
to keep a record of their cognitions.

THE USE OF HANDICAP AIDS

Both passive and, to a lesser extent, relatively active CFS patients
use aids, such as a walking stick or wheelchair. Like medication for
pain relief, such aids tend to obscure the symptoms and impairments of
patients. In addition, they may undermine the confidence-building
process that allows patients to believe in their own ability to
recover. Therefore, one of the first goals will be to gradually
eliminate the use of any such aids. (After all, a wheelchair does not
allow the patient to independently perform the steps -of the activity
program.) Usually, the therapist can accomplish this by simply
explaining the situation and having the patient agree not to use the
aids. The patient may want to gradually reduce the use of the walking
stick or wheelchair. This requires a concrete plan of action,
indicating the time frame, for example, a maximum of 2 to 3 weeks.
Even though not using

p.512

the aid is likely to result in an even further decrease in activities,
starting the activity program at this lowered base level offers the
better prospect.

PHYSICAL ACTIVITY PROGRAM FOR LOW-ACTIVE CFS PATIENTS

Contrary to relatively active CFS patients, low-active CFS patients
are likely to need a physical program to improve their condition. The
program also must convince patients that physical complaints are not a
sign to stop the activities. Because of their low level of activities
and their belief that they are hardly capable of anything, the base
level for these patients will be far lower than that for relatively
active patients. The initial daily frequency of the activity, however,
is higher and preferably set at 6 times a day (i.e., twice in the
morning, twice at noon, and twice in the evening). A 1-minute walk is
commonly chosen as a first activity. Low-active patients seldom opt
for cycling. A minute is added each day, with a total of 5 minutes per
week. This leaves 2 minutes to spare, allowing the patient to skip a
day or to refrain from raising the duration of the exercise.

It is important to point out to patients that a 1-minute increase is
absolutely safe and that there is no danger, whatsoever, of
overtaxation. Emphasize that with these small but consistent
increments, a great deal of progress can be made in only a few weeks,
barring exceptional circumstances (see Figure 23.3). It is common to
cut back the frequency of the walks from 6 times a day to 2 or 3 times
a day after several weeks. Even before reaching a certain level such
as a twice-a-day 60-minute walk, patients will find that they are now
able to undertake other activities. By then, patients will also have
noticed that recovery from an activity is much faster.

As with the more active CFS patients, passive patients may experience
stagnations during the graded activity program. Regularly, the program
will be interrupted or stopped because of illness. It is important to
define what beingill means. A comparison with work and reporting sick
may be helpful: "There is no clear line between being sick and not
being sick. Someone may have been feeling a little under the weather
for several days but has still continued to go to work, until the
moment that this person really knows he is 'sick' and decides to stay
home. At some point, he decides not to label himself as sick any more,
even though he may still feel far from fit, and he goes back to the
office. At work, things will not run

[Figure 23.3 Example of Progress in a LOW-Activity Patient's Activity
Level Six Times a Day, as Recorded by Means of an Actometer during 14
Days.]

p.513

smoothly the first couple of days, and he will wear out quickly." This
is the approach patients should take for the activity program. When
patients have decided that they are sick, walking should cease because
exercising less will not help. Not until patients have resolved to go
back to work ("I'm not sick enough to stay home from work anymore")
and no longer label themselves as sick, should they return to the
program. Patients can then pick up from where they left off and
continue the steps as agreed.

Another problem may be that although progress was made earlier, this
has come to a standstill. Initially, the program seemed to produce the
intended results, but at some point ("1 simply can't manage more than
12 minutes"), progression halted. First the phasing prior to the delay
is evaluated. If this is found to have been too fast, the patient is
best advised to return to the last manageable level and to work back
up from there. The delay may also be due to activity-related
cognitions, as illustrated by views such as "If I go on walking, I
will probably start getting complaints" or "Just as I thought, I am
already starting to feel tired, I'd best go back." After discussing
these impeding thoughts, the therapist may encourage more helpful
cognitions: "It's all right to feel tired" or "There's no harm in
feeling tired."

MENTAL ACTIVITY PROGRAM FOR PASSIVE CFS PATIENTS

Once an activity program is under way, the patient and therapist
concomitantly agree on and start a mental activity program. Many
passive CFS patients experience difficulties performing activities
that require concentration, such as reading, doing crossword puzzles,
or working at a computer. At first, the activity should be carried out
2 or 3 times a day for perhaps 5 minutes. This is gradually increased
so that at the end of the week the patient has doubled the time spent
on the task. Although the more active CFS patients may have similar
concentration problems at times, with these patients the deficiency
manifests itself predominantly while planning the steps for a return
to work (or personal targets).

The type of mental activity also plays a role. Certain patients may
want to start with a textbook. This should be allowed, but patients
are usually better off to choose less complex material. It may even be
advisable to start with a children's book. The patient should make the
final decision, however, because the program is about promoting a
positive self-efficacy. Patients may also tend to spend more time on
the activity (e.g., at the computer) than initially agreed on. By
pointing out that the consequences are usually not felt until (much)
later, it generally is easy to convince patients to stick to the
program.

SOCIAL ACTIVITY PROGRAM FOR PASSIVE CFS PATIENTS

The social activity program for passive patients does not commence
until they have made progress in the preceding areas. Activities such
as making telephone calls, chatting with friends, or making social
calls are added gradually according to the same principles as the
other programs. It needs to be noted that some passive patients engage
in lengthy telephone conversations regularly since this is their only
opportunity to make contact with the outside world. They are not
always aware how fatiguing these calls can be. It is recommended to
make an early start in helping the patient adjust to having shorter
calls several times a day. Since

p.514

the social activity program also affects the patient's environment,
the patient needs to inform others of the program. The patient decides
on the content of the information.

LEARNING TO RELY LESS ON SUPPORT FROM OTHERS

Frequently, passive CFS patients have rallied the support of a
considerable number of people. It is also common for the patient's
environment to be just as concerned and anxious as the patient. This
may contribute to maintaining the complaints. If this seems to be the
case, the spouse or another key player from the patient's environment
should be invited to attend a session to discuss how to cut back on
this support.

PLANNING A RETURN TO WORK AND ACHIEVING PERSONAL GOALS

As with the more active CFS patient, when return to work is the
low-active patient's ultimate goal, an action plan is drawn up. For
these patients, a return to work may seem like a far less feasible,
perhaps even unobtainable, target than it is for the more active
patients. Adapting the activity programs to the patient's ultimate
goal from the very start of the treatment will help create the right
conditions to achieve a return to work.

The action plan for more personal goals closely follows the steps of
the activity programs. The discrepancy between the patient's current
situation and the aim of the treatment (to be able to take on normal,
daily activities again) is usually considerable in passive CFS
patients. Initially, they may think that they will never be able to
reach this target. Based on these feelings, they may give up on the
idea of a return to work sooner than the more active patients and opt
for personal targets as their ultimate goal.

When discussing the steps toward achieving one or more personal
targets, patients are asked to make an inventory of the activities
belonging to that particular target. Usually under the guidance of the
therapist, patients then identify the anticipated problems and
formulate solutions using whatever techniques they have already
applied successfully. These resolutions may be structured along the
principles of a gradual, step-by-step, activity-building scheme and
can involve making special preparations, practicing helpful
cognitions, and informing the environment.

RELAPSE PREVENTION FOR LOW-ACTIVE AND RELATIVELY ACTIVE PATIENTS

To prevent a relapse, it is paramount to enhance patients'
self-activity in each phase of the treatment. Whereas the therapist
initially challenges the patients' cognitions, introduces helpful
cognitions, and moderates behavior or teaches necessary skills, this
guidance becomes steadily less over time and the therapist takes more
of a back seat. After 6 to 10 sessions, the therapist's role should
mainly be supportive in analyzing recovery-impeding factors and
reinforcing goal-directed steps. Increasingly making it the patient's
own responsibility to detect and anticipate difficulties and to find
solutions will enhance the patient's self-efficacy and reduce somatic
attributions. The patient by this time is no longer a patient and has
learned how to influence his or her occasional symptoms.

p.515

Treatment usually consists of 10 to a maximum of 20 sessions, The
number will depend on the therapist's experience with the treatment as
well as on the patient's
condition. After completion of the actual treatment, follow-up
sessions are conducted with the single purpose of monitoring whether
the patient has sustained the treatment effect.

LIFESTYLE CHANGES

Every patient has a specific lifestyle. Some will have difficulties
with communicating their limits to others; others may be
perfectionists. There are also patients who have such an intense fear
of failure that they will be extremely apprehensive about achieving
the treatment goals and consequently will drop out of treatment at an
early stage. To prevent relapse, patients are advised to pay specific
attention to their own known weaknesses. Different lifestyles may
either induce patients to do too much or too little. Both behaviors
can send a patient once more into a downward spiral. Patients who
become aware of these innate weak spots may prevent a relapse or learn
how to resolve the situation in time.

GETTING RID OF THE "PATIENT LABEL"

Many patients find it hard to stop seeing themselves as patients. The
term chronic fatigue syndrome seems to suggest a permanent condition.
The fact that many CFS patients have been suffering from symptoms for
some time before they are referred for CBT does not encourage them to
have an optimistic outlook for a full recovery. In addition, patients
who are referred to a psychotherapist for CFS generally assume that
they will learn to cope with their complaints, not that they will
learn to perceive themselves as healthy individuals again. This is why
this goal should be one of the first points on the treatment agenda.
In the final phase of the treatment, the therapist raises this point
again by asking patients what they think still needs to happen before
they can replace the marker reading "patient" with a label indicating
"healthy." The response of healthy individuals who are suffering from
all kinds of flu like symptoms will be quite different from the
reactions of CFS patients, who usually interpret such incidental
complaints by saying, "I told you, didn't I? I still have CFS."

FOLLOW-UP AND TREATMENT EVALUATION

The purpose of the follow-up sessions is to discuss with ex-patients
how they have been dealing with the fatigue. Have they learned enough
to tackle any recurring symptoms? Here, the follow-up sessions mainly
take the shape of revision lessons or a refresher course. The
therapist reinforces patients' positive approaches toward the fatigue
or their behaviors that help prevent extreme symptoms. Far better
still, the therapist should have ex-patients reinforce themselves and
thus help to establish a positive self-efficacy. It is also
recommended to go through all the positive effects of the treatment
once more. Most patients who have been successfully treated will still
report feeling tired frequently, although this no longer takes extreme
forms and recovery occurs more quickly. In other words, the fatigue
has been normalized. Concomitant complaints like muscle pain or joint
ache will usually have disappeared gradually in the course of the
treatment.

p.516

TWO CASE STUDIES

Susan, a Relatively Active Patient
Susan, a mother of two children aged 1 and 3, is 38 years old when she
is referred for CBT by her internist. Her husband has accompanied her
on her first visit to the clinic. Apart from severe symptoms of
fatigue, Susan also mentions headache, muscle pains, and joint ache as
serious concomitant complaints. The fatigue symptoms first started
manifesting themselves after a tonsillectomy 8 years ago.

Four years ago, after a dramatic worsening of her fatigue symptoms,
Susan no longer felt able to continue working as a home health aide.
At the time of referral, Susan has been on full disability benefit for
3 years. Several medical reassessments all confirmed that, due to her
chronic fatigue, she was no longer able to fulfill the heavy physical
demands her work as a home health aide placed on her, resulting in a
65% disability.

Every weekday, at 6:30 in the morning, Susan takes on her caregiver
duties and starts bathing, diapering, dressing, and feeding the
children. She follows this with some simple domestic chores.
Frequently, she starts feeling shaky or nauseous while performing
these tasks, but she keeps egging herself on and tries to ignore the
complaints. If she has really reached the end of her tether, she goes
and sits on the couch and tries to relax. Still, she keeps being
troubled by thoughts that she is leaving her kids to fend for
themselves and is a lazy mother. Sunday is the only day she can sleep
in and leave the children's care to her spouse, which does not mean
that she feels any less tired. She barely undertakes any physical
activities that day.

Susan's self-formulated goal is a recovery from the chronic fatigue
complaints, thus creating more opportunities for spare-time
activities. Her concrete objective is to learn to react differently to
her feelings of fatigue. Susan will have to learn to postpone tasks or
just leave them be and to be less demanding of herself (and others).
Further, a subtarget will be learning to have others do certain tasks
or to ask others for help. Susan tends to claim most of the tasks for
herself and hardly ever asks her husband or others to help her. After
her recovery, Susan also wants to be able to do some paid work outside
the home again. Consequently, a return to work becomes one of the
primary objectives. The idea of doing a few hours of paid work every
week after her recovery really appeals to Susan. This idea is further
specified and 16 hours per week becomes the (initial) target, but it
will not involve working as a home health aide. Prior to her most
recent position, she had several years of experience with
administrative work, which she now prefers to take up again.

Next, the functional analysis is discussed with Susan. At the first
signs of fatigue, she tends to respond with impeding, irrational
thoughts: "I just have to keep on going and finish my work," "It isn't
normal and can't be right that I tire so easily," "If I take some
rest, I am leaving my kids to fend for themselves and then I am a lazy
mother." These cognitions keep her physically active, which soon
aggravates the complaints. When Susan has completed the housework she
made herself do, she is exhausted. She feels powerless and guilty for
not being able to change this pattern.

With the acceptance exercises, Susan learns to adopt the following
helpful cognitions when the fatigue kicks in: "Okay, so I'm feeling
tired right now. Simply accept it. Things will only get worse if I try
to fight it." She has kept a record of her cognitions earlier in the
treatment, which has made her more aware of any

p.517

fatigue-perpetuating cognitions. Concurrently, she begins with the
peak-stop exercise. As soon as these exercises have helped her set the
right base level, she starts with the activity program.

Susan opts for cycling to build up her activity level. She starts with
a 10-minute bike ride twice a day, and it is agreed that she will
increase each ride by 1 minute, with a minimum of 5 minutes per week.
During the activity program Susan keeps a record of her progress by
filling out an activity chart. In the second week, however, she starts
complaining of enhanced feelings of tiredness and pain. A look at her
chart reveals that her program lacks consistency. Together, Susan and
the therapist explore what factors may be playing a role here. It
turns out that Susan frequently does not give priority to the program
because she feels that certain other things that may present
themselves really need to be resolved first. This analysis also
reveals that the issue of asking others for help keeps warranting
special attention. During the following weeks, Susan manages to
gradually build up the bike rides to 1 hour twice a day. She feels
better all the time and has noticed that she can now cope with far
more than before. She starts expressing her doubts about the bike
rides because they take up so much of her time. It is agreed that she
will stick to a 1-hour ride per day but will spend the other hour on
one of her hobbies.

In the course of the treatment, Susan is required to apply for a
part-time post (as a desk clerk for four mornings a week) at a local
job center. Susan had not really reckoned with such an early return to
work, but the job did match her wish for a 16-hour-a-week office job
perfectly. Because she had made such good progress with the activity
program, it was decided, by mutual consent, that she would indeed go
for an interview and the steps for a return to work were drawn up. In
addition, Susan made an inventory of the problems she was likely to
encounter in this new job. Learning to leave tasks until later and
easing the demands on herself and others remained the prime focal
points.

Ann, the Low-Active Patient
Ann, a young woman of 20, has been referred for CBT.Her parents are
also present during the first session. Ann proves quite capable of
describing her complaints. She constantly feels tired and often has
pains in her muscles and joints. Even after a minor exertion, these
complaints become worse. This means she can do very little. She also
has difficulties concentrating. Recently, she picked up a few of her
textbooks again, but she did not even manage to finish a single page.
According to her parents, Ann used to be a lively, cheerful, and
active girl. She did well in school, engaged in sports, and played the
piano. Her complaints first began in her fourth year of high school,
when she contracted mononucleosis, from which she never fully
recovered. Both Ann and her parents feel that there is something
physically wrong with her because what else could explain her
persistent complaints? Yet, all the doctors that have examined Ann
have not been able to find any physical explanation for her symptoms.
Besides, all this has not done her any good.

When Ann is describing what her normal day is like, she starts crying.
Her misery overwhelms her when she realizes the lousy state she is in.
She feels completely powerless because there is absolutely nothing she
can do to change things. Every day takes on more or less the same
pattern; there is practically no variation.

p.518

When Ann wakes up, usually around 9 A.M., she already feels tired. Her
mother has prepared breakfast for her downstairs, after which Ann goes
and lies down on the couch for a while until she has gathered enough
strength to climb back up the stairs to her room, where she goes back
to bed. She hardly ever gets dressed. Most times she falls asleep, but
sometimes she just leafs through some magazines. At about 1 o'clock,
her mother brings her lunch, which she eats lying in bed, after which
she usually stays in bed until about 3 or 4 P.M., resting and looking
at the pictures in her magazines. Listening to the radio is too tiring
for her: Any sound or noise makes her feel even more tired. In the
late afternoon Ann goes back downstairs. Occasionally, she invites a
friend to visit her, but listening to her friends' chatter also tires
her easily. At times, when she starts feeling too tired, she even asks
her visitors to leave. She watches television once in a while, but
usually only children's programs. Most days she goes back up to her
room around 8 P.M., where she usually falls asleep pretty fast.

The therapist discusses with Ann whether she thinks she may be able to
go back to school. After listening to an explanation of the
step-by-step approach, Ann offers to think about adult education.
Going back to school ("But that is still a long way off") is chosen as
her final target. Ann also wants to pick up one of her sports again.

Ann is mainly anxious about her complaints getting worse, which is why
she tries to take it easy, as much as she can. She also tends to
continuously focus on her body. The therapist challenges thoughts like
"When I feel tired, there must be something physically wrong with me"
and explains that Ann's fatigue no longer has a warning function since
she feels tired all the time anyway. Moreover, getting tired is not
bad; there's no harm. Getting tired is okay. Better still, like most
people her age, she should try not to pay any attention to feeling
tired. Thus, Ann is not asked to keep a record of how tired she feels.
It is also agreed that she will stay up all day, will not go to bed in
the afternoon, and will spend most of the day downstairs in the living
room. Armed with the cognition "there's no harm in getting tired," Ann
starts her activity program.

Ann has chosen walking, starting with a I-minute walk 4 times a day.
She records her walks scrupulously and makes steady progress. Soon she
has reached 20 minutes per walk. But then she falls ill and cancels
her sessions. She does not return until 6 weeks later. She has had a
bad flu. It is decided that the best thing to do is to pick up from
where she left off and restart the program with four 20-minute walks a
day and build up from there.

For her mental activity program, Ann chooses reading and starts with a
simple but captivating children's novel. The three daily reading
sessions soon become longer. She is enjoying them and after a few
weeks reports that reading gets easier all the time. She can also
manage reading the newspaper better now. In preparation for her return
to school, Ann decides, after consultation, to look up her old
schoolbooks again and see which topics she might like to read up on.
She would also like to do some computer games again. She succeeds in
drawing up a plan for these activities according to the principles
applied earlier.

During the subsequent stage of the treatment, after it has become
clear that Ann wants to take adult classes, she and the therapist
discuss what would be the best approach. Ann needs to go to a
different town for these classes, and she is afraid that this will be
too tiring. This problem is also tackled with the step-by-step method.
She will start by taking a daily bus ride to a location of her own

p.519

choice, for example, the shopping mall, and will spend some time there
before taking the bus back. Every week, the traveling distance is
increased gradually until it equals the time it will take her to
travel to school.

The plan to go back to school is taking shape and gets more concrete.
Ann has inquired about which courses she can take. As laid down in the
action plan, Ann wants to reach her final target, being able to attend
all the scheduled classes and do her home assignments, in 8 weeks'
time. She wants to begin by attending at least one class per subject
once a week, if possible, and build from there. With this approach,
Ann finds herself able to do more all the time without developing any
(new) complaints. When she is attending all of her classes and is
managing her homework, she decides to pick up one of her sports again.
She goes running and also systematically builds up this activity,
little by little. Ann still feels tired at times, but she now knows
this is a healthy way to feel. She no longer considers herself to be a
CFS patient.

OTHER WAYS OF APPLYING CBT FOR CFS

CFS INADOLESCENTS

The CBT for the treatment of CFS as described in this chapter has
initially been developed for and tested with adults. Although
controlled studies into the effects of CBT in adolescents are still
lacking, CBT is also considered suitable for the treatment of young
CFS patients, provided that the therapist takes their individual
circumstances into account. Participation of the parents in their
child's treatment is a precondition.

Not only the adolescent's own reactions toward the fatigue but also
the attributions and reactions of the parents will determine how their
child deals with the complaints. In addition, the specific
developmental tasks the adolescent is facing (e.g., efforts toward
autonomy, identity, and separation), need to be reckoned with. These
efforts, in fact, are in conflict with the adolescent's present
dependence imposed by the affliction (Pipe & Wait, 1995).With children
under the age of 15, the parents will frequently act as a kind of
cotherapist. With adolescents over this age, the parents will often
have to learn to step back and encourage their child to take
responsibility for the treatment.

GROUP THERAPY

CBT for CFS can also take the form of group therapy. Although as yet
no studies are available in the literature on the subject, several CFS
patients in our center were treated in a group setting. Group therapy
is most suitable for patients whose functional impairment is moderate.

Successful treatment is most likely if the group is relatively
homogeneous and the participants are in a comparable stage of life.
Groups of 8 patients may consist of both passive and relatively active
CFS patients, provided that the latter are in the majority. It is far
more difficult "to get patients moving" in a group that consists
largely or exclusively of patients with a predominantly passive
activity pattern. The progress of some members of the group can set an
encouraging example for other patients. Comparing and discussing the
participants' individual actometer patterns may help the patients
visualize which direction their activity program should take.

p.520

Our current group therapy program comprises 14 two-hour sessions over
approximately 6 months. All sessions are conducted under the guidance
of two therapists. The three key ingredients are provision of
information, the actual group interactions, and homework assignments.
The therapists explain the elements of the program in an interactive
fashion using the approach discussed in the earlier sections. During
the remainder of the sessions, the patients discuss this information
and compare it with their own experiences. For the clinical practice,
the advantage of group therapy mainly lies in being able to treat
several patients simultaneously.

CBT ADMINISTERED BY FAMILY DOCTORS

Some CFS patients may also be treated by their family physician.
However, several important criteria need to be met. The GP needs to be
adequately informed of CFS, but also, and perhaps more importantly,
needs to be prepared and able to allot sufficient amounts of time to
the treatment. Furthermore, the physician needs to be able to select
those CFS patients who are most likely to benefit from the treatment.
This usually implies CFS patients who are still relatively active and
for whom the majority of prognostic factors are favorable. No
comorbidity should be present, and there should be a predominantly
positive self-efficacy about the symptoms, moderate somatic
attributions, no repetitive use of medication, and a social
environment with a positive attitude toward the patient's recovery.
Only when these conditions exist will therapy by the GP offer any
prospects of success. As yet, no data are available on the
possibilities and effectiveness of CBT for the treatment of CFS as
administered by the family doctor.

TREATMENT OF INPATIENTS

In the studies described earlier in this chapter, the therapies
provided were always on an outpatient basis. Chalder, Butler, and
Wessely (1996) reported an uncontrolled study involving six inpatients
of a clinic that specialized in the treatment of CFS. They provide a
comprehensive description of the treatment they developed for their
patients, most of whom were all but completely inactive and bedridden.
The treatment starts with a low-level activity program and is directed
at separating the symptoms a patient experiences from the tendency to
immediately cease the activities. Next, the program focuses on
reestablishing a normal sleep pattern and limiting periods of rest to
fixed times. Although an uncontrolled study, the effects reported are
encouraging. Five of the six patients showed considerable improvement,
and this effect was still present 3 months after their release from
the clinic.

Cox and Findley (1998) also described CBT and graded activity of CFS
patients in an inpatient setting. They claimed at 6 months
postdischarge, a perceived increase in level of ability in 82%
compared with activity prior to their admission to hospital.

PITFALLS FOR THERAPISTS

The cognitive-behavioral treatment of CFS patients frequently poses
specific problems, which may involve the treatment itself but also,
and particularly, may

p.521

concern the therapist-patient interaction and the patient's
motivation. First, some recommendations are given for therapists
intending to practice CBT for CFS. Next, some of the pitfalls a
therapist is likely to encounter in the course of the treatment are
discussed.

WHO SHOULD PRACTICE CBT?

The study by Prins et al. (2001), in which the effect of CBT in CFS
patients was investigated, involved 13 therapists. They reported that
treating CFS patients had been more difficult than the treatment of
patients with a different somatic symptomatology or patients with
psychosocial or psychiatric problems (Prins et al., 2001). This seems
to be the general impression of most therapists. It turned out that
therapists with little experience in the treatment of patients
suffering from somatic complaints have difficulty preventing patients
from dropping out. This illustrates the importance of adequate
training and preparation. Knowledge of and experience in applying
cognitive-behavioral therapy with patients who have a somatic illness
is a prerequisite. In addition, therapists must keep themselves
informed of the current scientific research into CFS. This also
enables therapists to explain and clarify the rationale of their
actions and may facilitate the patient's treatment. As a matter of
course, any therapist working with this category of patients, needs to
secure adequate supervision, preferably conducted by therapists
experienced in CBT treatment.

RECOVERY OR MANAGING THE FATIGUE?

Some therapists believe that full recovery as the final goal of CBT
for CFS is too ambitious. They prefer to restrict the treatment to
helping patients learn to manage the fatigue. However, this implies
that, though patients may perhaps learn to control or deal with their
complaints, they will still think of themselves as patients, with all
that this entails. Thus, normal feelings of tiredness will be
considered in the light of the syndrome. Like an athlete who will
never jump higher if he does not put the bar higher, the patient will,
generally speaking, never be able to achieve more than the goal the
therapist and patient have set for themselves. This is true for CFS
patients in particular because they often hold on to the idea that CFS
is a permanent condition that will never be cured. Therapists who put
the bar at "being able to manage the fatigue" will accomplish less for
and with their patients.

Sometimes a therapist may agree hastily to targets that are too low or
vague. When a patient who formerly worked full time defines a target
as a partial return
to work, the therapist will feel relieved because at least the patient
has set a concrete target and will leave it at that. But does reaching
this goal mean the patient
really has recovered or is technically still a patient? The latter is
indeed the case when the individual still receives a partial
disability allowance, which, in turn,
implies that both the patient and his or her social environment will
keep on thinking in terms of "CFS patient." A target that states "I
want to be able to take
up work as a volunteer" is an example of a goal that is far too vague.
The chances of success are limited unless the patient and therapist
clearly define the kind of
work, job opportunities, location, and the number of hours. Moreover,
there are no criteria for checking progress or testing whether the
goal has been achieved.
Thus, therapists may find themselves in deep water if they go along
with low-level or vaguely defined treatment goals.

p.522

FROM PROTOCOL TOWARD PERSONALIZED TREATMENT

When a particular treatment has been comprehensively described in a
protocol, therapists may be tempted to simply start treating patients
with this protocol in hand. They may even inform their patients that
treatment will be based on such a protocol. However, to ensure a
successful outcome, the actual treatment must be tailored to each
individual patient and be directed at the patient's particular
cognitions and behaviors. The danger of working with a protocol lies
in the risk that accountability is placed with the protocol and not
with the therapist and patient. The therapist may say (or think):
"This protocol simply doesn't work," or the patient may tell the
therapist, "I have done everything you asked me to do, but it has not
worked at all." Perhaps the therapist will subsequently start looking
for new or alternative solutions. Either way, both parties fail to
take personal responsibility for the problems. The therapist has not
translated the protocol into an individualized approach to fit the
patient, and the patient has taken the therapist's suggestions as the
prescribed and only approach without adapting the instructions to his
or her own personal situation. To prevent this from happening, the
treatment must be fine-tuned to the patient's individual cognitions.
At the behavioral level, the therapist needs to encourage patients to
find their own solutions to change impeding behaviors. An additional
risk is that, when patients, in their personal lives, do not
successfully apply the techniques discussed during the sessions, the
therapist may start trying too hard to find alternative solutions.
Instead, it is essential to help patients build up their
self-confidence by holding them more accountable for the program. This
is all the more important because self-confidence and personal
responsibility are prerequisites for the later sessions when patients
have become familiar with the treatment's underlying principles.

NONCOMPLIANCE WITH HOMEWORK ASSIGNMENTS

If patients fail to carry out homework assignments or do not bring
records or charts along to the sessions, this is often taken as a sign
that they are resisting treatment. However, it may well indicate that
the therapist's instructions have been too complicated or vague. This
is often the case with assignments related to drawing up action plans.
The therapist then needs to probe for possible obstacles and encourage
patients to find alternative ways to complete the assignment
appropriately.

FOCUSING ON BODILY SYMPTOMS

A strong focus on bodily symptoms has proven to be a major determinant
of fatigue. One of the mediating factors of CBT is aimed at reducing
patients' focus on bodily symptoms. In practice, changing this
tendency often proves difficult. One of the pitfalls is that the
therapist's approach to the subject can intensify the focus on bodily
symptoms. Asking patients at each and every session whether the
complaints of fatigue have diminished is not productive. Nor is it
wise to have patients continue reporting the degree of the fatigue
after the third or fourth session. In fact, these constant queries are
likely to enhance the perceived fatigue. Although patients are
supposed to direct their attention to other things, they are being
prompted to pay even more attention to the way they feel.

p.523

THE SUITABILITY OF THE TREATMENT FOR CHRONIC FATIGUE ASSOCIATED WITH
OTHER ILLNESSES

Chronic fatigue is a common, often reported complaint and is not
restricted to chronic fatigue syndrome. It is also prevalent in
patients suffering from multiple sclerosis (MS), neuromuscular
diseases, or chronic pancreatitis, and in patients who have suffered a
stroke (van der Werf, van den Broek, Anten, & Bleijenberg, 2001)or who
have been successfully treated for cancer (Servaes, Verhagen, &
Bleijenberg, 2002;Vercoulen et al., 1996).

The model that lies at the base of the CBT for CFS as described in
this chapter was found not to fit MS patients suffering from chronic
fatigue. This suggests that the present model needs to be adapted to
this group. Current clinical experience with the treatment of chronic
fatigue in MS patients is limited, however, and to date no empirical
research has been conducted. This also applies to most of the other
conditions mentioned. The only exception is that research into chronic
fatigue after successful cancer treatment has been stepped up in
recent years. The fatigue-related symptoms following cancer treatment
have been found to be quite distinct from those observed in CFS in
several aspects. Thus, former cancer patients reported far fewer
instances of muscle pains, joint ache, and headache, and mentioned low
activity patterns only rarely (Servaes, Prins, Verhagen, &
Bleijenberg, 2002). Also, with former cancer patients, a distinction
needs to be made between patients in whom the fatigue symptoms are
recent (occurring within 12 months following treatment) and patients
who have been suffering from fatigue for a longer period. There are
indications that in the first group of patients, the patient needs to
come to terms with having (had) cancer and having undergone invasive
medical treatment before being able to overcome the fatigue. The
treatment for the latter group possibly resembles the treatment of the
more active CFS patients most. The findings of clinical trials with
this group of patients, in which an individualized treatment protocol
was used, look promising. However, before drawing any firm
conclusions, investigators need to conduct controlled studies to
provide empirical evidence for the effects found.

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Bazelmans, E., Bleijenberg, G., van der Meer, J. W., & Folgering, H.
(2001). Is physical deconditioning a perpetuating factor in chronic
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