Treatment

There are currently three specific strategies clinically recognised in the CMO report as being potentially helpful in managing the illness: pacing, graded exercise and cognitive behaviour therapy. (There are many anecdotal reports of other approaches having positive effects on individual symptoms, but insufficient evidence exists to currently recommend them as overall management techniques.)

Opinions differ widely (amongst doctors and patients) on the benefits and disadvantages of each of these approaches, but the common aim of all of them should be sustainable improvement in physical functioning and adaptation to the illness. Different people respond in different ways to different treatments, and ME patients rarely suit a 'one size fits all' approach.

Pacing

Pacing is usually self-managed by the patient and carer at home, although some patients may have a doctor or therapist to help, depending on the doctor's knowledge, experience and personal beliefs of ME. Most patients keep an 'activity' diary to track their activity and rest periods and how they feel each day. All mental and physical activities are noted in the diary because seemingly innocent activities such as watching a film or a phone call from a friend can use as much energy as walking up the stairs or getting dressed. It is important to remember that for very severely affected patients stroking a pet or having the curtains opened for a few minutes could be considered 'activity'. The activity diary enables patients to observe their activity patterns and identify which activities (or duration of activity) they can manage without difficulty and which ones trigger worsening of symptoms. Over a number of weeks a pattern of sustainable activity/rest becomes apparent - a 'baseline'. This will be different for each patient depending upon a number of things such as how severely they are affected by ME, the activities they enjoy doing, the social support they have, etc. From this baseline the duration or frequency of activities is cautiously increased in small increments, with all reactions being noted in the diary. If symptoms worsen or new symptoms appear the patient returns to their previous baseline for a while before trying again.

The most common problem with pacing is when patients try to rush it and fall back into boom and bust, or when they do not take relaxing rest. Rest periods need to be relaxing mentally as well as physically, should be uninterrupted and should be taken in a quiet darkened room, lying down doing nothing except letting the mind wander. Some patients find their mind can go into overdrive when they are trying to relax, and these patients can find it helpful to practice relaxation techniques such as visualisation, meditation or slow deep breathing, or listening to specially composed relaxation music. Watching TV, talking to friends or listening to dance music is definitely not relaxation!

Pacing involves patients accepting their illness and coming to terms with the physical limitations (see 'symptoms' section) and mental impact of the illness (eg. denial, anger, shock, guilt, despair, grief). It requires patients to take ownership and responsibility for their care plan, with help and support from family members and key professionals if available.

Scientific evidence for pacing is sparse, although the majority of patients and voluntary organisations endorse it, and some doctors consider that it has an important part to play in managing the illness. Most patients that pursue pacing say their activity diary helps them to learn about their own individual ME and gives them a sense of control back over their life. This is the approach that AYME believes is most effective and least harmful if applied incorrectly.
For further information about pacing click here

Graded exercise

The CMO report states that graded exercise may help ambulant outpatients (ie. mildly affected patients able to attend regular outpatient appointments) if applied appropriately by a properly qualified therapist with activity levels being based on a patient's current physical capacity. It states: "The programme should be mutually agreed between patient and therapist, it should be regularly adapted according to clinical response (ie. the patient's physical reaction), and patients should be carefully monitored to ensure that exertion does not exceed target levels"� (CMO report page 47). In other words people should be started off slowly, and should not be forced into exercising beyond their ability. Programmes should be "mutually agreed and non-coercive"� (CMO page 61). Unfortunately this is often not the case and many patients are put through their paces with aggressive graded exercise programmes that take little or no regard of their physical response. In these situations patients may relapse and take days, weeks or months to recover back to their previous 'normal'. We urge anyone considering graded exercise to proceed with caution, to listen to their body, and to stop if they appear to be getting significantly worse as a result of the programme.
For further information about graded exercise click here

Cognitive Behaviour Therapy

Article last edited on Tuesday 28th July 2009                          Printable Version