What are the principles of managing people with CFS?

Appropriate symptomatic treatments (e.g., analgesia for pain, antidepressants for depressed mood, sedatives for sleep disturbance) need to be considered on an individual basis and reviewed regularly. As with other chronic medical and psychological disorders, the relationship between doctor and patient may influence the long-term course of the disorder (Cope et al. 1994). In part, the significant non-specific (placebo) response rate in controlled treatment trials for people with CFS is likely to reflect this important component of good clinical practice (Frank, 1983; Elkin et al. 1989).

When people with CFS develop significant new symptoms, or experience a marked change in symptoms, they should be carefully reassessed. New symptoms should not automatically be assumed to be part of the CFS symptom complex.

Perspectives "Each new proposed treatment might just be the one to set things moving in the right direction. They stretch from the sublime to the ridiculous, but you must try them all lest you risk the 'Don't you want to recover?' question. These treatments aren't always benign, often leaving you physically worse off than when you started, not to mention emotionally and financially." -- a person with CFS

 

What are the expectations of a treatment trial for CFS?

In general, evaluating proposed treatments for people with CFS requires:

• a reasonable scientific rationale for the agent to be tested, and preliminary findings showing safety and potential efficacy (phase I data)
• randomised, double-blind and placebo-controlled trials (Standards of Reporting Trials Group, 1994; Begg et al. 1996).

• internationally accepted diagnostic criteria (Schluederberg et al. 1992; Fukuda et al. 1994)
• recognised self-report measures of fatigue, mood and other key symptoms (Schluederberg et al. 1992)
• independent assessments of functional status at onset, completion of treatment, and three to six months later (to ensure durability of the treatment effect).

What drug treatments for CFS have been evaluated?

Intravenous immunoglobulin: Four double-blind, placebo-controlled trials of therapy with intravenous immunoglobulin (based upon a rationale of disturbed immunity in people with CFS) have been published (Lloyd et al. 1990b; Peterson et al. 1990; Rowe 1997; Vollmer-Conna et al. 1997a). Two of these trials conducted by one research group in Australia produced conflicting results, with the larger dose-ranging study demonstrating no significant benefit (Lloyd et al. 1990b; Vollmer-Conna et al. 1997a).

Antidepressants: Because of the high rate of depression in people with CFS, antidepressant therapies have received considerable attention, but empirical evidence from trials is limited. Moclobemide (a reversible monoamine oxidase inhibitor) has been evaluated in a large double-blind, placebo-controlled trial (Hickie et al. 1998). Limited evidence of benefit was observed, with an improvement in the subjective sense of energy, which was not associated with any alteration in mood.

Treatment with fluoxetine (a selective serotonin reuptake inhibitor [SSRI]) showed no more benefit than placebo (Vercoulen et al. 1996b).

Studies of combination therapy with a low dose tricyclic antidepressant and a non-steroidal anti-inflammatory agent in people with fibromyalgia found beneficial effects on muscle pain and sleep disturbance, but not fatigue or mood (Goldenberg et al. 1986; Jaeschke et al. 1991). A range of other agents which act primarily on CNS function have been examined in preliminary trials only (phenelzine, amantidine, galanthamine, l -carnitine -- see Box 4.1).

Perspectives "So far none of the alternative medicines have any scientifically proven benefit for people with CFS, although some individuals do seem to benefit from particular treatments they try. We also know that people who are desperate to get well may be exploited by practitioners offering unproven treatments. If a practitioner is offering alternative treatments to people with CFS, we believe that it is essential that they are informed of the cost and risks of the treatment, as well as whether there is any published scientific evidence to support its use." -- a patient support group

 

Is there a role for behavioural treatment approaches?

The rationale for this approach is outlined in Box 4.4. It has two objectives:

• The behavioural component encourages planned resumption of physical and mental tasks. Tasks are stopped before they produce an exacerbation of symptoms, but the level of activity is gradually increased. The physical activity programs are individually designed to take account of the patient's current level of disability and avoid immediate worsening of symptoms.
• The cognitive treatment aims to overcome attitudes that may reduce the likelihood of recovery, such as fear of physical activity, social withdrawal, depressed mood, or a fixed belief that a viral illness has caused permanent injury so that recovery is impossible. These are identified in a systematic review of the person's attitudes to the cause of the illness, exacerbating factors and prognosis. The doctor works with the patient to improve the knowledge base and mental attitudes required for overcoming the illness.

The positive studies show a continuing benefit for cognitive behaviour therapy at long-term follow-up (Sharpe et al. 1996b; Deale et al. 1997; Fulcher and White 1997). The exercise portion of the cognitive behaviour therapy approach has been shown to be more effective at improving aerobic capacity, symptomatic status and functional performance than relaxation and flexibility therapy (Fulcher and White 1997). Only one of the 66 people with CFS in this exercise study reported worsening of symptoms over the 12 months of the program.

On balance, the evidence strongly suggests that cognitive-behavioural treatment incorporating graded physical activity should be a cornerstone of management of people with CFS:

• Given that simplistic attributions of a purely physical basis for the illness are associated with poor outcome, people with CFS should be encouraged to adopt the widest possible view of the psychosocial, medical and rehabilitative strategies to promote recovery.
• Secondary medical and psychological morbidity caused by prolonged inactivity can be prevented by graded exercise programs with an individualised approach to the initial exercise level and a prolonged and realistic time frame for improvement.
• Concurrent depression or anxiety is associated with poor outcome and should be actively treated.

Perspectives "One consequence of being chronically ill for years at a time is the isolation. As much as you try, it is very hard to keep up the old friendships from school, work and uni. People move on, but I have not been able to go out and socialise like before." -- a person with CFS "We believe that the management and treatment of psychological symptoms in people with CFS should be similar to that for people with other chronic medical illnesses. Psychological symptoms in CFS can include depression, anxiety, and panic attacks among others." -- a patient support group

 

What is the role of sleep management?

In CFS, sleeping longer does not improve physical or mental functioning. Excessive periods of sleep only serve to further disrupt circadian rhythm. The purpose of sleep management is therefore to encourage regular sleep-wake times:

• restricting the sleep period to about eight night-time hours
• avoiding stimulants during the evening period
• reducing or abolishing daytime naps
• promoting daytime physical and mental activity.

Perspectives "Currently, community services in Australia serve people with CFS, their families and carers very poorly. Services and support for people with other chronic and serious illness are generally provided without the ambivalence, relative ignorance and generally negative attitudes with which the support is provided to people with CFS, their families and carers." -- a patient support group "The doctor has the major responsibility for the care of people with CFS. However, many people do not have a supportive, well-informed medical practitioner. For them, the support of local community services is vital. The doctor and community services must work together to meet the needs of people with this disorder" -- a patient support group

 

Should a doctor put the person with CFS in contact with support groups?

• provide individual and group support to people with CFS and their families
• collect practical information with regard to the availability and quality of medical and government services
• disseminate scientific information to lay people
• lobby government agencies to improve funding for patient services
• promote service delivery and research by raising funds
• increase community awareness of the plight of sufferers.

Inevitably, members of CFS support groups tend to include those with the most prolonged illnesses (Sharpe et al. 1992). Therefore, the groups may inadvertently reinforce stereotypes of chronicity and disability. Depending on the nature of the groups, some may serve to increase alienation from medical and government agencies and encourage forms of treatment that lack scientific evaluation.