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Recognising chronic fatigue syndrome

Colette Bennett
Clinical Specialist Nurse
Lancashire and South Cumbria CFS/ME Team

The prevalence of chronic fatigue syndrome is believed to be around 40 patients per 10,000 total patient population at one GP practice; so it is vital primary care professionals are aware of symptoms and correct treatment

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a complex disorder of unknown aetiology. Diagnosis of CFS/ME can be problematic as clinicians tend to be sceptical of the existence of CFS/ME as a disease entity and those family physicians who do diagnose CFS/ME are not confident.1 There is no diagnostic test for CFS/ME and, at present, there is no cure. We do not know why patients develop CFS/ME but we do know a great deal about patients and the symptoms they are left to manage to try to improve their quality of life.

The range of symptoms is wide with clinical presentations of medically unexplained fatigue unrelieved by rest; sleep disorder; temperature disturbance; abdominal discomfort; headache; nausea; muscle and joint pain; and swollen throat. Patients may also experience cognitive difficulties, including impairment to short-term memory, as well as problems with word finding and information processing.

CFS/ME patients may have been investigated extensively by other specialists for individual symptoms without positive findings, with all other medical causes of fatigue excluded before a diagnosis of CFS/ME is suspected. Symptoms can vary in intensity and type over a period of weeks or months, which can lead to uncertainty for both the patient and the clinician about the nature of the underlying problem.

Currently, diagnosis of CFS/ME within the NHS should follow National Institute for Health and Clinical Excellence (NICE) guidance criteria using blood tests to screen for other possible causes of fatigue and, if normal, clinical presentation of symptoms assessed by a clinician with the necessary level of expertise.

The NICE guidelines suggest that identifying and managing symptoms early in primary care, with shared decision-making with the patient is good practice.2 GPs and practice nurses could manage patients who are mildly affected. Patients who are moderately or severely affected by the condition should be referred to specialist CFS/ME services, if available.

In the recent Pacing, graded Activity and cognitive behaviour therapy: a randomised Evaluation (PACE) trial, results confirmed that successful treatment programmes for CFS/ME with significant improvements in fatigue levels and physical functioning were graded exercise therapy (GET) and cognitive behavioural therapy (CBT).2

The CBT programme used in PACE included strategies to establish a baseline of activity and rest, and a regular sleep pattern with negotiated gradual increases in physical and mental activity according to the patient's individual capacity.

The GET programme was based on the theory of CFS/ME that is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. The therapeutic strategies included establishing a baseline of activity or exercise, followed by negotiated incremental increases over time, tailored to the patient's individual capacity. The aim of treatment is to help the patient return to appropriate physical activities by reducing fatigue and disability.

It is important to note that GET or CBT delivered by health professionals without the appropriate level of clinical expertise in managing patients with CFS/ME can lead to an exacerbation of symptoms. Common problems encountered by patients with CFS/ME are suggestions of activity and rest totally inappropriate for the level of physical disability experienced by these patients. To illustrate this point, when engaging on a treatment programme with patients with CFS/ME we often suggest activities for 10 seconds as a starting point and build very gradually from there, rather than the 30-minute walk, five days a week that has been suggested by some clinicians.    

Several strategies have been found to be helpful in encouraging patients with CFS/ME to comply with the treatment programme, including the therapeutic relationship, an educational approach to treatment and the structure of the treatment programme.

Therapeutic relationship
The development of trust between the patient and the therapist often starts with the therapist listening to the patient's journey to diagnosis of CFS/ME and the negative impact the condition has on their lives. This can be an opportunity for the therapist to demonstrate their clinical expertise, gaining trust and offering support.

Educational approach to treatment
The physiological reasons for symptoms can be discussed to allow the patient a better understanding of the rationale behind the treatment programme for CFS/ME. It is also an opportunity for patients to discuss their own beliefs about the condition and their expectations of treatment.

The treatment approach should be enabling, to encourage the patient to take ownership of their condition and to become an expert in their own care, as with other long-term conditions.

Treatment programme structure
A structured approach to treatment with explicit explanations for the patient as to what is expected of them and the therapist's responsibilities enables them to feel in control of their recovery and symptom management.
The use of advanced care planning for appointments and projected progress can help in the patient's management of their mental concentration problems and issues with short-term memory loss.

Early successful strategies with quick positive outcomes can encourage patients to believe there will be a positive outcome after all their hard work, ie, seven days of keeping to regular bedtimes and avoiding sleeping in the day to improve sleep quality. Patient success stories are useful for motivation and practical tips of how to change and enable patients to set realistic goals for themselves.

The use of an activity diary to record progress and setbacks enables the patient to review and make sense of the patterns that lead to good management of CFS/ME symptoms or identify what has precipitated a bad day. This can lead to the setting of negotiated realistic goals for the outcome of treatment and as a strategy between sessions to ensure the patient feels fully supported.

The length of the treatment programme over 12 months, with review sessions, helps to encourage compliance with the treatment programme. Currently, there is no structured support network established in primary care for CFS/ME patients as is the case with other long-term conditions. There are several challenges to successfully treating or managing patients with CFS/ME. Barriers to improving the quality of life of patients with CFS/ME tend to come in two categories: the level of disability experienced; and social problems that impact on the patient's ability to engage on the treatment programme.

Conclusion
CFS/ME patients often believe that they have a greater physical capacity than is realistic, so push themselves to do more with no adequate rest or relaxation. The consequences of overdoing it are an exacerbation of symptoms and patients losing confidence in the treatment approach.

Patients who are severely affected by CFS/ME often do not want to accept their reduced physical capacity. It is difficult to encourage these patients to reduce their overall level of activity as a necessary part of the treatment programme, to explore their baseline and safely increase activity and so improve their physical health.

A further barrier to a successful outcome of treatment is events beyond the patient's control that are a crisis they must address despite their poor health; for example, a patient whose children were to be taken into care; fighting custody battles for children; dire financial circumstances; or older infirm parents. The energy used to manage these life events drain the patient and they often have nothing left to use for the strategies recommended as part of a graded activity programme.

References

  1. Chew-Graham CA, Cahill G, Dowrick C, Wearden A, Peters S. Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome. Ann Fam Med 2008;6(4):340-8.
  2. National Institute for Health and Clinical Excellence (NICE). Chronic fatigue syndrome/myalgic encephalomyelitis: diagnosis and management. Available from: http://guidance.nice.org.uk/CG53
  3. White et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;377:823-36.

Resource
A greater insight can be gained by accessing NHS Choices: a helpful guide to understanding the condition and video clips of patients talking about living with CFS/ME. Visit:
www.nhs.uk and click on Health A-Z