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1100 Burloak Drive, Suite 603, Burlington, Ontario L7L 6B2
Tel. 905.319.0202 • Fax 905.319.9055
E-mail: inquiries@odysseyhealthservices.com
www.odysseyhealthservices.com
Dr. Richard G. Marlin, Director
Treating Chronic Fatigue Syndrome: What Works? What Doesn’t?
What constitutes effective treatment for chronic fatigue syndrome (also referred to as
myalgic encephalomyelitis and chronic fatigue and immune dysfunction syndrome) has
been a matter of considerable debate and dispute.
Several systematic reviews of the literature in the last 10 years have concluded that
cognitive behavioural therapy and graded exercise have been the only treatments with
demonstrated efficacy to both improve function and decrease symptoms in patients
diagnosed with chronic fatigue syndrome
1.
Most unfortunately, these treatments have not been well received by patient support
groups, and alternatives have been advocated in various publications in spite of the lack
of empirical evidence supporting these alternative recommendations.
As an example, a paper was published by Carruthers et al
2
(referred to as ‘Canadian
Consensus Document’) presenting a variety of suggestions, described in the paper as the
clinical opinions of the authors, with regard to treatment. These suggestions did not
represent empirically supported treatments.
One of the most significant points of contention and controversy between the
mainstream, empirically-supported literature and the opinions reflected in this document
had to do with whether increases in function and exercise should be progressed in a
carefully graduated fashion but independent of the patient’s experience of their
symptoms, or whether the patient’s level of activity needed to be actively modulated
based upon their experience of fatigue and other symptoms.
It is quite well established in the chronic pain literature that activities should be quota-
based rather than symptomatically-based.
3
1 Whiting, P.; Bagnall, A.; Sowden, A., Cornell, J., Mulrow, C. and Ramirez, G.: Interventions for
the Treatment and Management of Chronic Fatigue Syndrome: a Systematic Review, Journal of
the American Medical Association, September 19, 2001, Volume 286, Number 11; Chambers, D.,
Bagnall, A., Hempel, S. and Forbes, C. (2006) Interventions for the Treatment, Management and
Rehabilitation of Patients with Chronic Fatigue Syndrome/Myalgic encephalomyelitis: an Updated
Systematic Review. Journal of the Royal Society of Medicine, 99, 506-520; Prins, J., van der
Meer, J. and Bleijen, G. (2006) Chronic Fatigue Syndrome. Lancet January 28, 2006.
Indeed it is well established that basing
activity upon the symptom of pain will reinforce fear and avoidance and result in
2 Carruthers, B.M., Jain, A.K., DeMeirleir, K.L. et al (2003) Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal
of Chronic Fatigue Syndrome, 11 7-97
3 See Flor and Turk in Melzack and Wall’s Textbook of Pain, 5th Edition, pp 241-258.
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diminished function and an increased experience of pain.
The authors of the Carruthers et al paper argued that pursuing such a strategy with
chronic fatigue syndrome, in their clinical experience, produced a significant number of
untoward adverse events and might indeed be harmful to patients. Once again the
authors acknowledge that such concerns and predictions were based upon their clinical
experience and not upon well-controlled published studies.
Fortunately, White, Goldsmith, Johnson et al recently completed a multicentre
comparison of Cognitive Behaviour Therapy, Graded Exercise Therapy, Specialist
Medical Care, and what they characterize as Adaptive Pacing Therapy (designed to
formally implement the kinds of recommendations outlined in the Carruthers et al paper).
The White et al paper was very recently published on-line (February 18th, 2011) in the
prestigious British medical journal Lancet.
White et al reported on the outcome of 641 patients, 160 of whom were assigned to the
Adaptive Pacing Therapy, 161 to the Cognitive Behaviour Therapy, 160 to the Graded
Exercise Therapy and 160 to the Specialist Medical Care group.
When the 3 active therapies were compared to Specialist Medical Care alone, both
Cognitive Behaviour Therapy and Graded Exercise Therapy produced an improvement in
self-reported fatigue scores, 52 weeks after starting treatment, as well as improvement in
self-reported functioning. No such difference was noted between Adaptive Pacing
Therapy and Specialist Medical Care alone.
When Cognitive Behaviour Therapy and Graduated Exercise Therapy were compared
directly to Adaptive Pacing Therapy, patients receiving Cognitive Behaviour Therapy and
Graded Exercise Therapy again reported less fatigue and better physical functioning
overall.
Furthermore, there were no significant differences in the frequency of serious adverse
reactions between many of the groups, with 2 adverse reactions reported in the Adaptive
Pacing Therapy Group, 3 adverse reactions in the Cognitive Behaviour Therapy, 2
adverse reactions in the Graded Exercise Therapy group and 2 adverse reactions in the
Specialist Medical Care alone group.
Review of the demographic data showed that patients averaged 38 years of age, were
77% female, and had an average duration of illness of 32 months (range 16 to 68
months). None of these demographic variables differed between groups of patients.
Patients were randomly assigned to treatment.
It is of interest to note that when patients were asked about their confidence about
treatment (prior to commencing treatment) only 57% of patients in the Cognitive
Behaviour Therapy reported being confident compared to 72% of patients in the Adaptive
Pacing Therapy group and 70% in the Graded Exercise Therapy group. For Specialist
Medical Care alone, only 41% of patient reported feeling confident.
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However, after treatment, 82% of patients in the Cognitive Behaviour Therapy group
reported they were satisfied with treatment compared to 88% in the Graded Exercise
Therapy group and 84% in the Adaptive Pacing Therapy group. A much lower level of
satisfaction (50%) was reported in the Specialist Medical Care alone.
Thus, when put to a multicentre, randomly assigned, carefully controlled empirical test,
Cognitive Behavioural Therapy and Graded Exercise Therapy were both demonstrated to
be superior to Adaptive Pacing Therapy, similar to the advice recommended in
Carruthers et al, as well as the advice recommended by Bested, Logan and Howe
4 for
the treatment of chronic fatigue syndrome as well as fibromyalgia.
An accompanying editorial5 noted that while the White et al study clearly demonstrated
(as had previous studies) that Cognitive Behaviour Therapy and Graded Exercise
Therapy demonstrated that patients could recover from chronic fatigue syndrome, further
study was required to isolate the effective elements of therapy and to further understand
why the Adaptive Pacing Therapy was ineffective.
Odyssey Health Services has treated many patients with chronic fatigue syndrome as
well as patients with fibromyalgia and other chronic pain syndromes. Our therapy has
always been individualized, modeled after the empirically supported therapies but
customized to individual patients and implemented with patients in the field.
Our therapy is combined aspects of cognitive behavioural therapy with graded exercise
therapy and insured concomitant treatment of other physical and mental health
difficulties. I published a study with my colleagues in the American Journal of Medicine
6
demonstrating the effectiveness of this particular methodology with chronic fatigue
patients.
Unfortunately, as Simon Wessely
7 speculated in a commentary accompanying the
systematic review of the evidence-based treatment for chronic fatigue syndrome reported
by Whiting et al in the Journal of the American Medical Association, the empirical
evidence does not always persuade patient support groups and others with strongly
entrenched beliefs about the nature of the illness and appropriate treatment.
Thus it can be expected that this recent study will generate considerable debate and
criticism. Nonetheless, the study adds significantly to the weight of evidence supporting
4 Bested, A., Logan, A. and Howe, R. (2006) Hope and Help for Chronic Fatigue Syndrome and
Fibromyalgia. Cumberland House (a handbook not subject to peer review as in a major journal)
5 Bleijenberg, G. and Knoop, H. (2011) Chronic Fatigue Syndrome: Where to PACE from here?
Lancet. Published on-line February 18, 2011.
6 Marlin, Anchel, Gibson, Goldberg and Swinton. (1998). An Evaluation of Multidisciplinary
Intervention for Chronic Fatigue Syndrome with Long-Term Follow-Up, and a Comparison with
Untreated Controls. American Journal of Medicine, 105 (3A), 1105-1145.
7 Wessely, S. (2001) Chronic Fatigue Syndrome – Trials and Tribulations. Journal of the American
Medical Association. 286, 11, 1378-1379.
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cognitive behavioural therapy and graded exercise, and clearly fails to demonstrate
effectiveness of what the author’s term adaptive pacing therapy.
Richard G. Marlin, Ph.D.
Psychologist (Alberta, British Columbia, Nova Scotia, Ontario)
Director, Odyssey Health Services
