Authors

Marshall R, Paul L, Wood L

Institution

Nursing and Health Care, Faculty of Medicine, University of Glasgow, Glasgow, Scotland, UK

Aim

The purpose of this study was to investigate the use and perceived benefit of complimentary and alternative medicine (CAM) and physiotherapy treatments tried by people with chronic fatigue syndrome (CFS) to ease painful symptoms.

Methods

This study used a descriptive, cross-sectional design. People with CFS who experienced pain were recruited to this study. Participants were asked during a semistructured interview about the treatments they had tried to relieve their pain. Each interview was conducted in the home of the participant. Fifty participants were recruited, of which 10 participants were severely disabled by CFS.

Results

Eighteen participants were trying different forms of CAM treatment for pain relief at the time of assessment. Three participants were currently receiving physiotherapy. Throughout the duration of their illness 45 participants reported trying 19 different CAM treatments in the search for pain relief. Acupuncture was reported to provide the most pain relief (n=16). Twenty-seven participants reported a total of 16 different interventions prescribed by their physiotherapist.

Conclusions

The results of this study suggest some physiotherapy and CAM treatments may help people manage painful CFS symptoms. Future research should be directed to evaluating the effectiveness of interventions such as acupuncture or gentle soft tissue therapies to reduce pain in people with CFS.

Publication

Physiotherapy Theory and Practice, 2011 Jul; 27(5): 373–83

Comment by ME Research UK

Patients with ME/CFS do not have the benefit of a magic tablet to relieve their symptoms. The best they can hope for at present is some strategy to manage their symptoms, the most debilitating of which for many is pain. In one survey 79% of patients said they have severe pain at least some of the time, and this figure is higher in formal research studies with between 84 and 94% of patients reporting some degree of muscle or joint pain.

When conventional therapies fail, many people become disillusioned with mainstream medicine and look around in desperation for something that works. So they turn to treatments that remain unproven and controversial, and which belong to the world of complementary and alternative medicine. These include therapies such as homeopathy, acupuncture and hypnosis, and many ME/ CFS patients have given these options a try. Other interventions include cognitive behavioural therapy and graded exercise therapy which are used in a conventional medical setting, but are associated with their own controversies, particularly among ME/CFS patients and charities.

Dr Rebecca Marshall, Professor Lorna Paul and Dr Les Wood at Glasgow Caledonian University previously looked at the types of pain described by patients, how severe they are, and what parts of the body are affected. In a follow-up study, the group investigated what kinds of complementary and alternative medicine, physiotherapy, and management strategies have been tried by ME/CFS patients to ease their pain, and which of them they have found to be successful.

The researchers interviewed 50 adult patients with ME/CFS (defined by the CDC criteria, which requires there to be a least four of eight symptoms, including muscle pain and headache), including ten individuals severely disabled by their condition. No participants had any other long-standing diseases, or any history of depression or psychiatric illness.

The questionnaires used in the interviews collected information about the pain associated with their illness (and in fact these are the results reported in their previous paper), as well as the treatments they had tried in an attempt to manage their pain, and how successful these had been.

Forty-five patients said they had tried a complementary or alternative treatment for pain relief at some time throughout their illness, while 18 were using one at the time of the survey. It is important to note here that this survey is not evaluating the effectiveness of the treatment, but rather how successful patients have perceived it to be.

The most common therapy was acupuncture, used by 23 patients (including 5 of the most severely disabled). This option also appeared to have had the most success, with 14 participants (around 60%) reporting that it had helped relieve their pain. However, 8 patients had stopped the treatment because it was too expensive, and 6 because of difficulties in getting to the clinic.

A number of clinical trials of acupuncture have been conducted in ME/CFS patients; most have been based in China, and all have reported success rates of more than 78%. However, the quality of these studies has generally been poor, different kinds of acupuncture have been used, not all included a dummy control treatment, and not all specifically measured pain as an outcome. Despite this, studies of acupuncture in other medical conditions such as low back pain suggest that it can be useful as a supplement to conventional treatments. New, high-quality trials of acupuncture for specific symptoms of ME/CFS might even be worthwhile, possibly combined with existing drugs. For instance, one recent trial found acupuncture plus diclofenac to be more effective than placebo acupuncture plus diclofenac for osteoarthritis of the knee.

In the Glasgow study, the next most popular therapy after acupuncture was massage, which had been tried by 18 patients. Only 5 individuals experienced any pain relief, and the majority said their pain actually increased during treatment and was worse the next day. The patients reported that deep and firm pressure was used in their treatments, but, as the researchers point out, there are more than eighty different styles of massage, and gentle pressure may actually be more effective in ME/CFS. There is evidence for this from one other study, suggesting that gentle soft tissue treatments may warrant further research.

Reflexology had been tried by 17 patients, but only 4 reported any benefit, and 9 said it increased their pain. Each of the other complementary therapies was tried by only 6 or fewer patients, with varying degrees of success, which makes it very difficult to generalise these results.

Twenty-seven patients had received some form of treatment from a physiotherapist. The most successful therapies appeared to be those that involved gentle exercise, although only a handful of individuals had tried each one, meaning it’s impossible to draw any firm conclusions about their effects. However, most patients had tried to manage their pain themselves by undertaking physical activity of some kind, and pacing and stretching were reported to be the most successful of these techniques.

Graded exercise was the intervention that was most commonly prescribed by physiotherapists, and was generally the most painful; indeed, 11 of the 12 patients who had tried it said that it increased their pain. Eleven patients said that cognitive behavioural therapy had been beneficial, while 13 said that it was no help, and 22 had refused to have the therapy.

So, which of these treatments should the ME/CFS patient pick to help alleviate their pain? Unfortunately, it still seems largely a matter of pot luck. A few therapies appear to help some people, but they do not work for everyone, and the scientific evidence in their support is hardly conclusive. Unfortunately, this survey can provide only a snapshot of the alternative options for pain relief used by ME/CFS patients, and cannot supply any evidence for the effectiveness of any particular treatment or therapy.

However, the findings do perhaps point to those complementary and alternative therapies that may provide the best likelihood of success, and which are worth researching further: namely, acupuncture, soft tissue massage and gentle exercise.

In fact, the most frequently reported simple methods of easing pain in the survey were warm baths (partly offset by the fatigue of trying to get dried afterwards), application of heat (using hot water bottles, heat pads or electric blankets), lying down and drinking water.

Conventional medicine has so far largely failed to provide effective pain treatments for ME/CFS patients, and, as the authors of this report point out, “At the moment there is an extremely poor evidence base for any pain management strategies.” For this reason, people with the illness will continue to look for alternative methods to relieve the pain they experience, hopefully without spending large sums on the more outlandish therapies that have little chance of working.

This essay is an extract from our article (pdf 1 MB) in the Spring 2011 issue of Breakthrough.