The following is an article intended primarily for people who are working clinically with sufferers of CFS, however sufferers may also find it useful. It looks at those areas of life, listed below, that are real issues for those with CFS, but that rarely get a mention in the "how to " textbooks...
Introduction
Much has been made of the fact that when badly "administered", Cognitive Behavioural Therapy can be less than helpful in the management of Chronic Fatigue Syndrome. Indeed, despite now very strong evidence (see the recent JAMA review) that CBT is an effective intervention, there was a recent patient conducted survey which showed a high degree of dissatisfaction with implementation of this treatment.
However, we professionals would like to minimise this finding, we cannot ignore the fact that there is a very real problem. It would seem that for some sufferers, the key ingredient of best practice CBT - collaboration - is missing. The experience of this group of dissatisfied customers is that of treatment as rote prescription uniformly administered, a one sided exhortation to do more, exercise, sleep less. Coupled with this is the perception of a lack of empathy for very real pain, distress and disability.
The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice, encouraging the patient to do the right, evidence based thing - do more, exercise, sleep less. What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice; the complex reasons why the imposition of a routine on their current life feels nigh on impossible.
Advice is only useful if tailored, if presented with an awareness of the context in which it is to be applied. The factors that maintain and perpetuate pain, fatigue and disability are manifold, and each client will have a unique set of factors in play. Depression, loss, over-working, sleep disturbance, high self expectations, exhausting interpersonal strife, litigation, illness, work and family responsibilities, poverty, hopelessness-the list is of course endless. But unless we have some awareness of the client's life experience, we cannot, but in the most straightforward cases, proceed to give advice.
Evidence based practice is not enough - our practice must also be based in empathy, understanding, alliance and respect. Although there are no shortcuts to achieving these, an awareness of some of the recurrent issues and the unique nuances of practice involved in working with CFS may aid the practitioner in better understanding and working with these clients.
Of course, that's obviously it.
