Treatment of chronic fatigue syndrome: How to find a 'new equilibrium'?
Journal: Patient Educ Couns. 2009 Sep 19. [Epub ahead of print]
Authors: Boudewijn Van Houdenhove [a], and Patrick Luyten [b]
Affiliations:
[a] Department of Psychiatry, University of Leuven, Herestraat 49,=20
3000 Leuven, Belgium
[b] Department of Psychology, University of Leuven, Tiense straat=20
102, 3000 Leuven, Belgium
Available online 20 September 2009.
NLM Citation: PMID: 19773143
1. Introduction
In this issue of Patient Education and Counseling, two interesting=20
papers challenge current evidence-based treatments of chronic fatigue=20
syndrome (CFS). In the first study Goudsmit et al. [1] show that a=20
brief multi-component programme aimed at helping CFS patients cope=20
with their illness, may be as effective as cognitive behavior therapy=20
(CBT). In the second study Jason et al. [2] demonstrate that CFS=20
patients who carefully stayed within their 'energy envelope'=20
(measured by a self-monitoring strategy) did better than patients who=20
were less successful in keeping expended energy close to available=20
energy =96 a finding that challenges basic assumptions of graded=20
exercise therapy (GET)
Both papers highlight ongoing controversies surrounding the treatment=20
of this incapacitating and ill-understood illness. In this context,=20
we will reflect on the use of CBT and GET in CFS, the aim of=20
treatment in CFS patients, the importance of treatment acceptability,=20
and future research.
2. CBT/GET: what's in a name?
The cognitive-behavioral model of CFS hypothesizes that the illness,=20
independent from its initiating causes, is perpetuated by distorted=20
somatic perceptions as well as by dysfunctional cognitions and=20
behaviors such as exercise phobia and associated physical=20
deconditioning [3] and [4].
Although this model still lacks unequivocal empirical support,=20
cognitive behavior therapy (CBT) and graded exercise therapy (GET)=20
are widely used in CFS, since RCT's have shown that these treatments=20
may considerably ameliorate core symptoms of the illness [5].=20
However, in routine clinical practice =96 where numerous CFS patients=20
are seen with a long illness history and associated psychiatric=20
co-morbidities =96 CBT and GET are often used in a different way=20
compared to manualized RCT protocols.
Certainly, clinicians do apply CBT principles, but many of them add a=20
host of interventions that are not specific for CBT. For example,=20
they encourage patients to accept their illness and limitations, and=20
educate them about adequate self-care by 'adaptive activity pacing',=20
but also target pain, sleep problems and emotional distress by=20
symptom-oriented medical care and pharmacotherapy, stress management=20
techniques, experiential group discussions, family support and so on=20
[see e.g. 6].
In a similar vein, clinical programmes for CFS frequently include=20
graded activity instructions and/or physical reconditioning=20
exercises, but 'orthodox' GET (originally based on the physical=20
deconditioning/exercise phobia hypothesis) has now generally been=20
replaced by more flexible regimens, that take the patient's effort=20
intolerance into account and may in fact be renamed 'paced exercise=20
therapy' [7] and [8].
Thus, in contrast to 'pure' CBT and GET protocols, most clinicians=20
try to help CFS patients by pragmatic and flexible CBT- and/or=20
GET-based programmes. The promising results reported in this issue=20
[1] and [2] suggest that attempts to investigate the benefits of such=20
programmes are worthwhile and should be continued using more rigorous=20
methodologies.
3. Coping or recovery: a faulty dichotomy
There is no consensus about the final treatment goal in CFS [9].=20
Although few clinicians will assert that the majority of CFS patients=20
can be 'cured', some are convinced that 'full recovery' is possible=20
(yet, reported percentages depend on the criteria of recovery used,=20
i.e. varying from 20 to more than 70 percent) [10], while others=20
(like the authors of the present papers) [1] and [2] think that=20
enhancing coping with the illness is a more realistic and feasible goal.
However, if CFS is conceptualized as a 'disease of adaptation' linked=20
to stress system failure [11], the 'coping or recovery' dilemma seems=20
to be irrelevant. Indeed, educating patients to avoid a=20
'boom-and-bust' activity pattern that repeatedly provokes symptom=20
flare-ups =96 in the words of Jason et al. [2] to manage their 'energy=20
envelope' =96 may be the main condition for recovery. Additionally,=20
changing energy-consuming lifestyles and habits such as maladaptive=20
perfectionism, and learning to prioritize life goals may maintain=20
gains and prevent relapse.
In short, within the hypothesis of stress system failure, CFS=20
patients probably have the best chances of lasting recovery by=20
finding 'a new equilibrium', which =96 to use McEwen's famous stress=20
paradigm =96 may eventually restore allostasis [9] and [12].
4. The importance of a 'common ground'
It should not be overlooked that an astonishing gap exists between=20
the evidence-based treatment literature on CFS, and contrasting=20
opinions voiced by ME/CFS patient support groups and their advocates=20
[see e.g. 13].
Clearly, CFS patients are hypersensitive to any suggestion that their=20
ailment might be related to psychological factors. This=20
hypersensitivity may be due to the 'invisibility' of the illness=20
(which may raise suspicion of malingering), the intense frustration=20
of functional limitations despite intact motivation and willpower,=20
and the humiliating social stigma of being unable to participate in=20
our achievement-oriented world.
Yet, therapists should realize that it is their responsibility to=20
make treatment strategies acceptable. In this perspective, they=20
should formulate an illness theory that, based on current evidence=20
and preferentially involving psychological and physiological aspects,=20
is compatible with the views and experiences of the patient [12].=20
Both papers in this issue [1] and [2] illustrate how such a 'common=20
ground' [14] can be the starting point for effective therapeutic help.
5. Conclusion
The cause of CFS is undoubtedly complex =96 even when in the future=20
different subgroups will be identified. Not surprisingly, recent=20
research suggests that a thorough understanding of the=20
pathophysiological mechanisms in CFS will necessitate a=20
system-biological approach [11]. Hence, it is very improbable that a=20
simple (medical or psychological) solution for this illness will ever be =
found.
Within this line of thinking, current evidence-based treatments (CBT=20
and GET) should not be considered a panacee. Using various=20
therapeutic strategies in a pragmatic and flexible way, based on a=20
plausible and acceptable illness theory =96 as exemplified by the=20
papers of by Goudsmit et al. [1] and Jason et al. [2] =96 may be=20
today's best option to assist patients in adequate self-care, to=20
control symptoms, improve quality of life and encourage adaptive=20
functioning that may ultimately result in regaining psychobiological=20
equilibrium.
Consequently, time has come to shift treatment research in CFS from=20
efficacy studies to effectiveness studies of programmes employed by=20
clinicians in 'real life'. Moreover, as a final aim, designing and=20
evaluating tailor-made treatments [12] that not only match patients'=20
preferences, strengths, psychological and physiological needs but=20
also take the dynamics of their personal life stories into account=20
[15] will be a great challenge for the future.
References
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illness. Efficacy of a multi-component treatment for people with=20
chronic fatigue syndrome. Patient Educ. Couns. 2009;=20
doi:10.1016/j.pec.2009.05.015.
[2] Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of=20
energy modulation on physical functioning and fatigue severity among=20
patients with ME/CFS. Patient Educ. Couns. 2009; doi:10.1016/j.pec.2009.0=
2.015.
[3] V. Deary, T. Chalder and M. Sharpe, The cognitive behavioural=20
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[11] B. Van Houdenhove, F. Van Den Eede and P. Luyten, Does=20
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