This is not new but I don't think has been highlighted much in CFS circles. I thought I would post it as CBT studies involving Gijs Bleijenberg and his team are often quoted to claim that CBT is an evidence-based therapy for CFS.
However, compliance generally isn't measured and I'm not convinced that most patients are actually following the program which the authors claim is the way to treat CFS.
In particular, I think the percentage of "relatively passive" CFS patients who would follow this program can't be particularly high:
ETA: people shouldn't feel they have to read it all. It's not that exciting.
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Treatment manuals:
However, compliance generally isn't measured and I'm not convinced that most patients are actually following the program which the authors claim is the way to treat CFS.
In particular, I think the percentage of "relatively passive" CFS patients who would follow this program can't be particularly high:
"So, for example, the first day the patient has six 1-minute walks, the second day six 2-minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day."
ETA: people shouldn't feel they have to read it all. It's not that exciting.
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==========Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients
Cognitive and Behavioral Practice, Volume 13, Issue 2, May 2006, Pages 157-166
Ellen Bazelmans, Judith Prins, Gijs Bleijenberg
Abstract
In chronic fatigue syndrome (CFS), facilitating, initiating, and perpetuating factors are distinguished.
Although somatic factors might have initiated symptoms in CFS, they do not explain the persistence of fatigue.
Cognitive behavior therapy (CBT) for CFS focuses on factors that perpetuate and prolong symptoms.
Recently it has been shown that, based on their level of activity, two groups of patients can be distinguished.
For so-called “relatively active” CFS patients, the main perpetuating factors are nonaccepting and demanding cognitions leading to bursts of activity.
For so-called “passive” CFS patients, their fear that activity might worsen their symptoms (which results in an avoidance of activity) is the most important perpetuating factor.
These differences in perpetuating factors result in separate treatment manuals for relatively active and for passive CFS patients.
Before describing the treatment manuals, we outline basic assumptions, considerations before starting CBT for CFS, and ways to determine the activity pattern.
Treatment manuals:
The Relatively Active CFS Patient
Challenging Complaint-Enhancing Cognitions
Relatively active CFS patients often have nonaccepting,
demanding, and therefore complaint-enhancing
cognitions. Fluctuations in the activity level of these
patients are provoked by these cognitions. Figure 1
shows what a circle of perpetuating factors for relatively
active CFS patients may look like.
Examples of complaint-enhancing cognitions leading
to bursts of activity are as follows: “If I give in to my
complaints, I will not be able to do anything at all”; “I do
not quit my activities, because if I give in to my
complaints it will only get worse”; “I am a weakling if I
do not stay active”; “I have to stay active because I don’t
want to burden other people.” The moment the
principal perpetuating cognitions and behaviors of the
particular patient are clear, cognitions are challenged.
Hereafter a base-level activity program is established.
The patient will start by practicing more helpful,
accepting cognitions, such as: “It does not make sense
to keep opposing my symptoms; I will accept them for
the moment”; “It is just the way it is”; “I don’t have to be
able to do everything, I am only a human being”;
“Everyone has his limits, so do I”; “ I can learn to
increase my activity level in a gradual and systematic way
instead of being too active followed by being overly
exhausted.”
Establishing a Base Level
For relatively active CFS patients a base level is
established by alternating rest and activity in order to
prevent bursts of activity and resulting extreme bursts of
fatigue. By base level is meant the total of activities a
patient can do spread over the day without causing
extreme fatigue. The so-called peak-stop exercise can
be used to attain the base level. With the peak-stop
exercise the patient learns to quit his activities the
moment his fatigue aggravates. For some CFS patients
the negative effects only manifest themselves after
they have stopped their activities or even a day
thereafter. Here, self-monitoring data are used to
determine a base level.
During the peak-stop exercise cognitions such as, “I
will just finish this and then I will rest" or "This has to be
done before tomorrow, so I will go on until it’s finished”
or “I know that if I am doing too much, my symptoms
will be worse tomorrow, but now I have a nice day at
least” will have to be replaced by such cognitions as, “I
better stop right now; tomorrow is another day and I will
finish my activities then.” The “positive” cognitions the
patient may have are often satisfying in the short term,
but are not conducive to his or her symptoms and health
in the long term. The peak-stop exercise is monitored to
ensure that the patient does not lapse into inactivity. The
exercise is about finding the right balance between
periods of rest and periods of activity. It is a temporary
aid, which will not be needed later on, because, as with
non-CFS patients, exercise peaks can then be performed
without long-lasting negative consequences. Usually,
patients are asked to record their base level. Which
activities should be included in the base level depends
on the patient’s personal circumstances. Some may still
be able to go out to work a few hours per day, whereas
others reach their base level after they have showered,
dressed, eaten breakfast, and performed some domestic
activities.
The patient’s base level should leave some room for
maneuver. Unexpected events or unforeseen life activities
need to fit within the set level. In addition, the base
level needs to allow room for the activity program, which
will be described below.
If, after a number of 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 fatigue may also be explained
by the way the patient carries out activities—for
Both instances warrant special attention and need to be
resolved.
Setting the base level also implies normalizing the
patient’s sleeping pattern. Most CFS patients tend to sleep
long hours, sleep and lie down frequently in the course of
the day, or cannot get to sleep at night even though they
are feeling extremely tired. It is essential to try and
normalize the sleeping pattern of these patients as quickly
as possible. This implies going to bed and getting up at
fixed times and no sleeping during the day. For patients
who still work (part-time), it needs to be established to
what extent the job is compatible with their base level. If
work does not overwhelm the patient’s limits, it may be
useful to have him or her continue working, since this
provides an opportunity to evaluate the way the individual
goes about his or her tasks. Is the patient always pressed
for time, always busy? Is there hardly any time for a break?
Decide, together with the patient, whether his or her work
approach is adequate or whether it needs to be adjusted.
It may also be useful to discuss with the patient the
possible effect this base level has on the patient’s
environment. The patient may no longer meet (presupposed)
requirements and live up to expectations.
Generally, the best way to resolve this matter is to involve
those in the patient’s environment in the treatment and
to jointly try and find (temporary) solutions to any
emerging problems. Involving the patient’s spouse or
others temporarily may significantly help the patient to
comply with his or her base level.
Increasing Activity
Activities can be divided into three categories: physical,
mental, and social. In nearly all cases treatment starts with
a physical activity program. For relatively active CFS
patients this mostly serves as a means to work resumption
or achieving other personal goals. The moment the
patient has set his or her base level, the physical activity
programs starts. The patient selects a simple physical
activity that can be performed every day, the duration of
which can be conveniently recorded. The aim is to have
the patient gradually and systematically increase the
frequency or duration of this particular activity. Walking
and cycling are generally good examples of such an
activity. The directive for relatively active CFS patients is to
perform an activity like walking or cycling twice a day,
starting at a level of which is certain that symptoms do not
aggravate, for example, 5 to 10 minutes. The activity level
is increased by 1 minute a day for each time the activity is
performed. A minimal increase of 5 minutes a week is
agreed upon, giving the patient the opportunity to skip
the activity once or twice or to refrain from increasing the
walking or cycling time. Although the activities that fit in
the base level will expand, alternating rest and activity
remains important.
The patient is asked to indicate the actual duration of
each activity on a graph. By analyzing stagnations in the
activity program impeding cognitions or difficulties the
patient might have with respecting limitations can be
traced. The most common problem with the relatively
active CFS patients is that they increase their activity level
too fast, eventually resulting in an increase of symptoms.
Another problem might be that the activity program is not
systematically, or is too slowly, performed. In these cases
the activity program may not have the priority of the
patient while other daily activities are performed too
often or for too long a duration. By means of the activity
program patients also learn to prioritize. This is accompanied
by a cognitive change essential for a successful
treatment outcome. The cognition “quickly doing this or
that” is replaced by “gradually and systematically increasing
activities.”
In general, the activity program will end at a maximum
of 60 minutes of walking or cycling. By that time most
patients will have become aware of the fact 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, walking or cycling is now being
replaced by other activities. One might also choose to
systematically expand mental and social activities, preparing
the patient for a return to work or other personal
targets.
It should be noted that 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). The focus of the activity program is a gradual
and systematic increase in activity. The achievement of
this goal—if approached in the right way—enhances
their sense of control and helps bring about a positive selfefficacy.
Work Resumption or Achieving other Personal Goals
In accordance with the ultimate objective of the
treatment, work resumption or achieving other personal
goals is subject to discussion from the start of treatment.
In the first sessions the work situation is analyzed. This
involves the possibility to return to the old workplace,
financial consequences of recovery, as well as whether the
patient wishes to get back to work in case of recovery.
Thereafter a plan for work resumption or achieving other
personal goals is established. Three steps are described.
First, the final goal is determined. Which work activities
does the patient want to be able to resume? Second, which
work activities fit in the current base level? What is the
patient capable of at this moment without resultant
complaint-enhancing effects? Finally, the work-resumption plan is drawn up. How can the patient build
up his activity level from the current situation to the
ultimate goal without exacerbating the symptoms? The
patient is asked to commit the various steps to paper,
taking into account any problems that may arise.
Compliance with the activity plan is evaluated.
The work-resumption plan is delineated by a gradual
and systematic increase of working hours as well as tasks
to be performed. Successful work resumption is only
possible if it is also presented to the patient’s employer,
company doctor, and/or medical adviser of the insurance
company. This is preferably done by the patient.
When a return to work is not an option, an action
plan is drawn up stipulating how to achieve other
personal targets. Principles used are the same as for
planning and achieving work resumption.
The Passive CFS Patient
Challenging Activity-Impeding Cognitions
For passive CFS patients the fear that activity
enhances symptoms is essential. As a result, activities
are avoided as much as possible. Because the body gets
unused to activity, symptoms will emerge at increasingly
lower levels of activity. In this way a self-fulfilling
prophecy is established. Figure 2 shows a conceivable
perpetuating circle for passive CFS patients.
The aim of restructuring anxious cognitions is
decreasing the fear of activity and motivating the passive
CFS patient to start and sustain the activity program.
Essential activity-impeding cognitions may be, “As soon
as I start feeling tired or start having pain I have to stop
everything I’mdoing” or “I can’t do anything on my own
anymore; others have to help me all the time.” More
helpful cognitions are: “If I completely adapt to my
symptoms I only make my situation worse”; “By raising
the level of my activities step-by-step, I will be able to
push my physical capabilities further”; “If I get symptoms
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—the only way to break
through is by becoming active again.” The patient may
be requested to keep a record of his or her cognitions.
Compared to relatively active patients, it is generally
more complicated to challenge the cognitions of these
passive patients without also involving behavioral
change. This is why, with passive CFS patients, the
moment of transfer to the graded exercise program is
brought forward.
Increase of Activity
Before starting the activity program, a (gradual)
cessation of the use of any aids like a walking stick or
wheelchair is realized. Such aids tend to obscure the
patient’s symptoms and impairments and may undermine
the confidence-building process that allows the
patient to believe in his or her own ability to recover.
After all, a wheelchair does not allow the patient to
independently perform the steps of the activity program.
Usually, cessation of the use of aids can be accomplished
by simply explaining the situation and having the patient
agree not to use the aids. If the patient wants to gradually
reduce the use of the walking stick or wheelchair, this
requires a concrete plan of action, indicating the timescale
(e.g., a maximum of 2 to 3 weeks). Even though
cessation of the use of the aid is likely to result in an even
further decrease of activities, starting the activity
program at this lowered base level offers the better
prospect.
Because passive CFS patients are hardly active
anymore, they start their activity program as soon as
possible. Most of them will choose walking as a buildingup
activity. The directive here is to start with a 1-minute
walk six times a day. Every day the walking time is
increased by 1 minute. So, for example, the first day the
patient has six 1-minute walks, the second day six 2-
minute walks, the third day six 3-minute walks, and so
on. The aim is a total build-up of 5 minutes a week for
each walk a day, allowing the patient to skip a day or to
refrain from raising the duration. Recording the activity
on a graph provides the patient with positive reinforcement
about his progress. Furthermore, the graphs are
used during therapy sessions to detect problems in the
activity building. The most common problem for passive
CFS patients is that the building-up process is going too
slowly because of the fear that activity is harmful. The
program will need to convince the patient that physical
complaints should not be taken as a sign to stop the
activities. It is explained to the patient that it is obvious
that, after a long period of inactivity, his body has to get
used to activity again. It is important to point out that a 1-
minute increase in activity is absolutely safe. It is
emphasized that by this small but gradual increase,
barring exceptional circumstances, a great deal of progress can be made in only a few weeks. It is common to
cut back the frequency of the walks from six times a day to
two or three times a day after several weeks. Even before
reaching a certain level—for instance, a twice-a-day 60-
minute walk—the patient will already find that he or she
is now also able to undertake other activities. By then the
patient will also have noticed that recovery from an
activity is much faster. Because passive CFS patients are
inactive in every area, a mental activity program is started
rather soon as well. Mental activities concern reading,
watching television, doing puzzles or computer work.
Usually these kinds of activities are started in units of 5
minutes three to four times a day. Based on the same
principles, a social activity program is started shortly
thereafter, involving activities such as making telephone
calls, receiving or paying visits, or making other social
calls. Since the social activity program will also affect the
patient’s environment, the patient needs to inform others
of the program. The patient decides on the content of the
information. The physical, mental, and social activities
chosen are geared to the activities needed for work
resumption or achieving other personal goals.
Frequently, passive CFS patients have rallied the
support of a considerable number of people. It is also
common for those in the patient’s environment to be just
as concerned and anxious as the patient. This support
may contribute to the maintenance of the patient’s
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 the support given.
Work Resumption or Achieving Personal Goals
As with the relatively active CFS patients, a plan for work
resumption or achieving other personal goals is made.
Here, activities previously performed during the mental
and social activity programs are used as first steps toward
work resumption or achieving other personal goals.
Relapse Prevention
Encouraging Self-Activity
In order to prevent a relapse it is paramount that the
patient’s self-activity is enhanced in each phase of the
treatment. Initially the therapist should challenge the
patient’s cognitions, introduce helpful cognitions, and
moderate behavior or teach the patient the necessary
skills. During the course of treatment this role will
increasingly become smaller and the therapist will take
more of a backseat. After 6 to 10 sessions the therapist’s
role will mainly be supportive in analyzing recoveryimpeding
factors and reinforcing goal-directed steps. By
increasingly making it the patient’s own responsibility to
detect and anticipate difficulties and to find solutions, the
patient’s sense of control will be enhanced and somatic
attributions will be reduced. The patient, who by this time
is no longer a patient, has learned how he can influence
his symptoms.
Getting Rid of the Patient Label
Many patients find it hard to stop seeing themselves as
patients. The term chronic fatigue syndrome already seems to
imply a permanent condition. The fact that many CFS
patients have been suffering from symptoms for quite
some time before they are referred for CBT does not
contribute to their developing an optimistic outlook as far
as a full recovery is concerned. In addition, patients who
are referred to a psychotherapist for CFS generally
assume that they will learn to cope with their complaints
rather than learn to perceive themselves as healthy
individuals again. This is why shedding the “patient”
label should be one of the first points on the treatment
agenda. In the final phase of the treatment this point is
raised again when the patient is asked what he thinks still
needs to be done before he can replace the marker
reading “patient” by 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, when they are incidentally
experiencing symptoms again, will usually interpret
signals from the body as symptoms of CFS instead of
normal and temporarily fluctuations of the body.