The Treatment of Chronic Fatigue Sundrome

The recent National Institute of Clinical Excellence (NICE) has made the following recommendations with regard to the treatment of chronic fatigue syndrome.

Shared decision-making between the person with CFS/ME and healthcare professionals should take place during diagnosis and all phases of care.

Health care professionals should;

• Acknowledge the reality and impact of the condition and the symptoms.
• Provide information about the range of interventions and management strategies as detailed below (such as the benefits, risks and likely side effects).
• Provide information on the possible causes, nature and course of CFS/ME.
• Provide information on returning to work or education.
• Take account of the person’s age (particularly for children younger than 12 years), the severity of their CFS/ME, their preferences and experiences, and the outcome of previous treatment(s).
• Offer information about local and national self-help groups and support groups for people with CFS/ME and their carers.

The guidance reminds healthcare professionals that people with CFS "have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care."

The guidance is very clear in pointing out that there is no known pharmacologial treatment or cure for CFS. It states that symptoms of CFS should be managed "as in usual clinical practice".

Cognitive Behaviour Therapy (CBT)

CBT should be offered to people with mild or moderate CFS. The course should be delivered only by a healthcare professional with appropriate training in CBT and experience in CFS. The CBT should be offered on a one to one basis.

CBT should include:

• Acknowledging and validating the person’s symptoms and condition;
• Explaining the CBT approach in CFS/ME, such as the relationship between thoughts, feelings, behaviours and symptoms, and the distinction between causal and perpetuating factors;
• Discussing the person’s attitudes and expectations;
• Developing a supportive and collaborative therapeutic relationship;
• Developing a shared formulation and understanding of factors that affect CFS/ME symptoms;
• Agreeing therapeutic goals;
• Tailoring treatment to the person’s needs and level of functioning;
• Recording and analysing patterns of activity and rest, and thoughts, feelings and behaviours (self-monitoring);
• Establishing a stable and maintainable activity level (baseline) followed by a gradual and mutually agreed increase in activity;
• Challenging thoughts and expectations that may affect symptom improvement and outcomes.
• Addressing complex adjustment to diagnosis and acceptance of current functional limitations.
• Developing awareness of thoughts, expectations or beliefs and defining fatigue-related cognitions and behaviour;
• Identifying perpetuating factors that may maintain or exacerbate CFS/ME symptoms to increase the person’s self-efficacy (sense of control over symptoms);
• Addressing any over-vigilance to symptoms and related checking or reassurance-seeking behaviours by providing physiological explanations of symptoms and using refocusing/distraction techniques;
• Problem solving using activity management and homework tasks to test out alternative thoughts or beliefs, such as undertaking pleasure and mastery tasks (tasks that are enjoyable and give a sense of accomplishment);
• Building on existing assertion and communication skills to set appropriate limits on activity;
• Managing sleep problems, for example by addressing any unhelpful beliefs about sleep, behavioural approaches to sleep disturbance, stress management, and/or relaxation training;
• Treating any associated or comorbid anxiety, depression or mood disorder according to NICE clinical guidelines on these conditions;
• Offering information on managing setbacks/relapses;

Graded Execrcise Therapy (GET)

The guidance recommends that "GET should be delivered only by a suitably trained GET therapist with experience in CFS/ME, under appropriate clinical supervision". GET should be delivered on a one-to-one basis.

GET should be offered to people with mild to moderate CFS.

The GET programme should include planned increases in the duration of physical activity followed by an increase in intensity which leads to aerobic exercise (ie exercise which increases the pulse rate).

GET should be based on the following:

• The person's current level of activities;
• emotional factors;
• vocational or educational factors;
• individual goals.

The GET programme should also include sleep and relaxation strategies.

The guidance recommends that healthcare professionals should:

• Assess the person’s current daily activities to determine their baseline;
• Agree with them a level of additional low-intensity exercise that is sustainable, independent of daily fluctuations in symptoms, and does not lead to ‘boom and bust’ cycles. This may be sitting up in bed or brushing hair, for example, for people with severe CFS/ME, or gentle stretches or a slow walk;
• Encourage them to undertake this exercise for at least 5 days out of 7, or build up to this level if and when possible;
• Advise them that this level of exercise may mildly increase symptoms for a few days (for example, a mild to moderate increase in stiffness and fatigue), explain why this may occur and discuss strategies to mitigate it;
• Offer information on the management of setbacks/relapses;
• When the low-intensity exercise can be sustained for 5 days out of 7 (usually accompanied by a reduction in perceived exertion), the duration should be reviewed and increased, if appropriate, by up to 20%. For example, a 5-minute walk becomes 6 minutes, or a person with severe CFS/ME sits up in bed for a longer period, or walks to another room more often. The aim is to reach 30 minutes of low-intensity exercise;
• When the duration of low-intensity exercise has reached 30 minutes, the intensity of the exercise may be increased gradually up to an aerobic heart rate zone, as assessed individually by a healthcare professional. A rate of 50–70% maximum heart rate is recommended;
• Exercise intensity should be measured using a heart rate monitor, so that the person knows they are within their target heart rate zone;
• If agreed GET goals are met, exercise duration and intensity may be increased further if appropriate, if other daily activities can also be sustained, and in agreement with the person with CFS/ME;
• After completing a GET programme, the healthcare professional and the person with CFS/ME should continue working together to develop and build on strategies to maintain exercise. Support should be available, if needed, to enable the person to reinforce the learning and lifestyle changes made and continue GET beyond discharge.

Activity Management

An activity management programme should include:

• Understanding that activities have physical, emotional and cognitive components, and identifying these components;
• Keeping a diary that records cognitive and physical activity, daytime rest and sleep. This will help to set baseline levels of activity (a stable and sustainable range of functioning), identify patterns of over- and underactivity, and develop an activity/exercise strategy;
• Establishing a baseline; specific activities may need to be increased or decreased while this is happening;
• Gradually increasing activity above the baseline in agreement with the person;
• Planning daily activities to allow for a balance and variety of different types of activity, rest and sleep. This may include making a weekly activity schedule;
• Spreading out difficult or demanding tasks over the day or week;
• Splitting activities into small achievable tasks according to the person’s level of ability/functioning, followed by gradual increases in the complexity of the tasks;
• Monitoring, regulating and planning activities to avoid a ‘boom and bust’ cycle;
• Goal setting, planning and prioritising activities;
• Explaining the role of rest in CFS/ME and helping the person work out how to build in rest periods and achieve a productive day;
• Regularly reviewing activity levels and goals;
• Offering information on the management of setbacks/relapses.

Pacing.

Pacing is a self-management approach that draws on some elements of activity management. The NICE guidance says that there isn't any research evidence to support its use with CFS patients but does concede that many patients have found pacing to be helpful.

Sleep Management

Some people have found sleep management techniques helpful in improving the quality of sleep.

These use behavioural techniques and changes in environmental conditions.

Relaxation

Acheiving a fully relaxed state is described in the guidance as a helpful straegy for people with CFS.

Pharmacological interventions

The guidance says that low doses of amitryptiline should be given to people with poor sleep or pain. It is also recognised that selective serotonin reuptake inhibitors (SSRIs) can be effective in dealing with mood disorders. The guidance warns against prescribing amitryptiline to someone who is already on an SSRI because of the potential for "serious adverse reactions".

---