Complementary and alternative healthcare use by participants in the PACE trial of treatments for chronic fatigue syndrome
Introduction
Chronic Fatigue Syndrome (CFS) is a relatively common condition affecting between 0.4% and 2.6% of the population, depending on the definition used [1]. Some regard Myalgic Encephalomyelitis (ME) as a separate disorder from CFS, whereas others think they are synonymous [2]. The condition is characterised by debilitating, persistent fatigue, muscle pain and other symptoms such as headaches, poor sleep and post-exertion malaise; sore throat and tender lymph nodes are reported by the minority of patients with CFS [3]. CFS affects all races and socio-economic groups.
CFS is a clinical diagnosis based on history and a comprehensive range of investigations which exclude other causes of fatigue. It involves comparing the patient's symptoms and history with diagnostic criteria; the Oxford criteria [4], the International 1994 criteria [3], and the National Institute for Health and Care Excellence (NICE) criteria [2].
Complementary and alternative medicine (CAM) is difficult to define and both culturally and contextually specific. Its use may be a surrogate for empowerment and self-help [5], [6]. Patients with chronic illnesses utilise CAM [7] for diverse reasons including engagement in one's own health, positive expectations of treatment and the need for hope [5], [7]. CAM treatments used by those with CFS include massage therapy, relaxation, meditation, homoeopathy, acupuncture, naturopathy and herbal therapies [7], [8], [9], [10]. Two systematic reviews of CAM for CFS found most studies were small, had poor methodology and produced inconclusive evidence [7], [10]. CAM use generally is greater among women, higher socio-demographic groups, those with more education and in long-term chronic illness [11], [12]. Both health characteristics and demographic factors contribute independently to CAM use [12] with over 90% of people with fibromyalgia using CAM [13], [14].
The PACE trial was a randomised controlled trial comparing four treatments for CFS; standard medical care alone (SMC), and SMC supplemented by one of three therapies: cognitive behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy (APT) [15], [16]. All CAM treatments in this study were funded outside the study.
This paper presents an in-depth analysis of the CAM data from the PACE trial dataset. The PACE trial represents the largest prospective dataset that has meticulously recorded the details of CAM in this particular population over 12 months. Our objectives in analysing this data were to understand the following: 1) the use of CAM at baseline and over the course of the trial; 2) the demographic and clinical associations with CAM use cross-sectionally post randomisation and prospectively at follow up; 3) the associations with treatment outcomes.
Section snippets
Methods
The methods are described elsewhere [15], [16]. The trial recruited 640 participants from six UK CFS clinics, allocated randomly to four groups with a final follow-up 52 weeks after randomization. The treatments are described in detail elsewhere [15], [16], [17].
CAM use in the study population
We had CAM data for 585/640 (92%) at both baseline and 52 weeks of study participants. At baseline, 450/640 (70%) of participants were using some kind of CAM. Of these, 199/640 (31%) participants were seeing a CAM practitioner and 410/640 (64%) were taking a CAM medication. The most commonly used CAM practitioners were acupuncturists and homeopaths.
Associations with CAM use at baseline
The associations between patient characteristics at baseline and any CAM use at baseline are set out in Table 1. In univariate analysis, longer
Discussion
Use of complementary or alternative medicine was common in this sample of patients with CFS, with the majority either using a CAM medication or visiting a CAM practitioner both at baseline and at follow-up. There was a small reduction in use of CAM over the 12 months of the trial. As with CAM use in people with cancer [24], some people stopped using CAM during the study while others started. Acupuncturists and homeopaths were the two most common practitioners seen. The main associations of CAM
Acknowledgements
Funding for the PACE trial was provided by the Medical Research Council, Department for Health for England, The Scottish Chief Scientist Office, and the Department for Work and Pensions. TC, ARP, and KAG were in part supported by the National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust and Institute of Psychiatry, Psychology & Neuroscience, King's College London. We acknowledge the help of the PACE Trial
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