Appendix D: Definitions used in this guideline

Appendix D: Definitions used in this guideline

Activity

Any task or series of tasks that a person performs. A task may have physical, emotional, cognitive and social components.

Activity management

A person-centred approach to managing a person's symptoms by using activity. It is goal-directed and uses activity analysis and graded activity to enable people to improve, evaluate, restore and/or maintain their function and well-being in self-care, work and leisure.

Age

  • Adult: aged 18 years and older.

  • Young person: aged between 12 and 17 years.

  • Child: aged between 5 and 11 years.

The age at which care is transferred between child and adult health services varies between 16 and 19 years, depending on the young person and their family's preferences and local circumstances.

'Boom and bust' cycles

Cycles of fluctuating activity levels and symptoms, which are a common feature of CFS/ME. Boom and bust cycles can happen when a person with CFS/ME is overactive when they are feeling better, which may lead to an increase in symptoms and a decrease in function.

Cognitive behavioural therapy (CBT)

An evidence-based psychological therapy that is used in many health settings, including cardiac rehabilitation and diabetes management. It is a collaborative treatment approach. When it is used for CFS/ME, the aim is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12–16 sessions. The use of CBT does not assume or imply that symptoms are psychological or 'made up'.

Deconditioning

Loss of physical fitness as the general physiological response to, for example, a prolonged period of inactivity.

Graded exercise therapy (GET)

An evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person's CFS/ME symptoms and functioning, aiming towards recovery.

Pacing

The report of the Chief Medical Officer's working group[12] defined the principles of pacing, and these are supported by people with CFS/ME and patient groups. Many of the principles are included in this guideline's recommendations on CBT, GET and activity management. Examples include spreading activities over the week, breaking tasks down into small manageable parts, interspersing activity with rest and setting appropriate, realistic goals for increasing activity.

In this guideline, pacing is defined as energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion. The keys to pacing are knowing when to stop and rest by listening to and understanding one's own body, taking a flexible approach and staying within one's limits; different people use different techniques to do this.

However, in practice, the term pacing is used differently by different groups of people. One understanding of its meaning is as adaptive pacing therapy, which is facilitated by healthcare professionals, in which people with CFS/ME use an energy management strategy to monitor and plan their activity, with the aim of balancing rest and activity to avoid exacerbations of fatigue and other symptoms.

Another understanding is that pacing is a self-management strategy, without specific intervention from a healthcare professional. People with CFS/ME generally support this approach.

Rest periods

Short periods when a person is neither sleeping nor engaged in physical or mental activity. Rest periods are a core component of all management approaches for CFS/ME.

Setback/relapse

An increase in symptoms above the usual daily fluctuations, which may result in a reduction in function for a time.

Severity

The degree to which CFS/ME affects a person's functioning and daily life[13].

  • People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.

  • People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

  • People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

Specialist CFS/ME care

A service providing expertise in assessing, diagnosing and advising on the clinical management of CFS/ME, including symptom control and specific interventions. Ideally this is provided by a multidisciplinary team, which may include GPs with a special interest in the condition, neurologists, immunologists, specialists in infectious disease, paediatricians, nurses, clinical psychologists, liaison psychiatrists, dietitians, physiotherapists and occupational therapists.

Stage

There are different stages in the natural course of CFS/ME: acute illness, maintenance or stabilisation, and recovery.



[12] Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical Officer of an independent working group. London: Department of Health.

[13] These definitions were agreed by the GDG and have been derived from definitions in:

- Royal College of Paediatrics and Child Health (2004) Evidence-based guideline for the management of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young people.

- Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical Officer of an independent working group. London: Department of Health.

- Cox DL, Findley L (1998) Management of chronic fatigue syndrome in an inpatient setting: presentation of an approach and perceived outcome. British Journal of Occupational Therapy 61: 405–9 (this approach was adopted in the CFS/ME working group's report to the Chief Medical Officer, see footnote 12).

  • National Institute for Health and Care Excellence (NICE)