CFS Support Group Tropical North Qld.

Chronic Fatigue Syndrome

The following are the overviews for the Australian 1997 CFS Clinical Practice Guidelines and for the Revised 2002 CFS Clinical Practice Guidelines(current). The two are presented side by side to allow a comparsion; to further faciliate this, the text in the 1997 not seen in the 2002 is highlighted in   red   , the new/added text in the 2002(revised) is highlighted in   green  . Those sections of text that have been moved to a different position are given matched highlights     ,      ,       .



1997 CFS Clinical Practice Guidelines
Overview

Introduction

Prolonged fatigue is a common complaint in the community and is usually transitory. If fatigue continues for more than six months, is disabling, and is accompanied by other constitutional and neuropsychiatric symptoms, then a diagnosis of chronic fatigue syndrome (CFS) should be considered.

Although the symptoms of CFS are currently hypothesised to be due to abnormal brain function, the underlying pathophysiology is not known at present. Therefore, CFS cannot currently be defined as a specific "disease" entity. Indeed, there is growing evidence that the disorder is heterogeneous, and it will probably prove to have no single or simple aetiology.

Nevertheless, the suffering and disability -- physical, psychological and social -- caused by the illness can be very considerable, in many cases comparable to that seen in multiple sclerosis and rheumatoid arthritis. It is therefore important that doctors convey to people with CFS their recognition of the reality and seriousness of the suffering and associated disability, even though an underlying disease process cannot presently be defined.



Diagnosis of CFS

A diagnosis of CFS is made on clinical grounds. It relies on the presence of characteristic symptoms (see Box 1), and the exclusion of alternative medical and psychiatric diagnoses. In individual patients, the symptoms of CFS may overlap with other common syndromes such as fibromyalgia and irritable bowel syndrome, and the primary diagnosis will depend on which symptoms are the most dominant and disabling. People with CFS often have concurrent depression, and this need not be considered an alternative primary diagnosis.

1: Diagnostic criteria for chronic fatigue syndrome
(Fukuda, et al. 1994)

1. Fatigue

Clinically evaluated, unexplained, persistent or relapsing fatigue persistent for six months or more, that:

  • is of new or definite onset
  • is not the result of ongoing exertion
  • is not substantially alleviated by rest
  • results in substantial reduction in previous levels of occupational, educational, social or personal activities
and

2. Other symptoms

Four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue:

  • Impaired short term memory or concentration
  • Sore throat
  • Tender cervical or axillary lymph nodes
  • Muscle pain
  • Multi-joint pain without arthritis
  • Headaches of a new type, pattern, or severity
  • Unrefreshing sleep
  • Post-exertional malaise lasting more than 24 hours



As similar symptoms may also occur in a range of other disorders (e.g., thyroid disease, anaemia, major depression), the first priority in clinical assessment is to exclude alternative explanations. This can be achieved by a careful history, physical examination and a restricted set of laboratory investigations.


Clinical history

The history should closely examine the character of the "fatigue". In people with CFS, fatigue is typically exacerbated by relatively minor physical or mental activity, and is associated with a protracted recovery period lasting hours or even days. The fatigue should be differentiated specifically from weakness (neuromuscular disease), dyspnoea and effort intolerance (cardiac or respiratory disease), somnolence (primary sleep disorders), and loss of motivation and pleasure (major depression).

Additional clues which could point to alternative diagnoses include: unexplained weight loss (occult infection, malignancy, thyrotoxicosis, Crohn's disease); dry skin and cold intolerance (hypothyroidism); snoring and daytime somnolence (sleep apnoea); risk factors for transmission of blood-borne infections (HIV, hepatitis C); prior episodes of depression or anxiety (vulnerability to psychiatric disorder); arthralgia or rash (connective tissue disease); and prescribed or illicit drug abuse. A history of altered bowel habit may indicate an underlying gastrointestinal infection (e.g., giardiasis), coeliac disease, thyroid disease, or inflammatory bowel disease.

Examination

Characteristically, there are no abnormal physical findings in people with CFS. The physical examination and mental state examination are therefore primarily directed towards excluding other disorders. A careful assessment for neurological deficits or signs of anaemia, cardiac failure, respiratory disease, hidden infection, connective tissue disease or tumour should be conducted. The presence of persistent fever, lymphadenopathy, or enlargement of the liver or spleen are not features of CFS and always warrant further investigation.

The behavioural signs of psychiatric disorder should also be sought, including psychomotor slowing (major depression), physiological arousal (anxiety states and panic disorder) and cognitive deficits (delirium or dementia).

Investigation

There are currently no validated laboratory tests to confirm the diagnosis of CFS, assess its severity or monitor progress. Hence, the purpose of laboratory investigation is to help exclude other disorders.
Recommended screening investigations are:

Additional investigations should be ordered only if the history or examination plausibly suggests other diagnoses (e.g., antinuclear antibodies if an autoimmune connective tissue disease is suspected), or if abnormalities are found in the screening investigations. Routine analysis of immune function (lymphocyte subsets, immunoglobulin levels), infectious disease serology, or environmental toxins is not recommended.

Specialist referral

In most cases, a general practitioner should be able to make a confident diagnosis of CFS. However, if, after a careful history, examination and screening investigations, the diagnosis remains in doubt, the opinion of a specialist physician should be sought. Referral to a psychiatrist may also be useful for people with profound or prolonged depression or anxiety states. Specialist referral may also help in formulating an appropriate management plan (see below).

Management

As most prolonged fatigue syndromes will resolve spontaneously, reassurance and supportive care is generally all that is required for early management. In people with established CFS, providing a definite diagnosis along with general information about the nature of the illness and its prognosis are important starting points for good clinical care.

2: Model of natural history of CFS

Model of natural history of CFS

Doctors who display empathy, acceptance of their patient's suffering, a non-judgemental style, and a commitment to continued care are likely to establish a beneficial therapeutic relationship. Conversely, doctors who reject the patient's illness experience are likely to promote feelings of alienation and to perpetuate ill health.

In managing people with CFS it is important to:

Understanding the illness

Helping the person with CFS to have a clear understanding of the nature of the illness is an important element of management. For example, some people harbour fears that they may be "going mad", or that minute amounts of environmental toxins may be causing irreversible immunological or neurological damage. Unwarranted concerns of this kind may lead to maladaptive attitudes and behaviours which may themselves increase disability and retard recovery.

Both the doctor and the patient should avoid simplistic attributions of CFS to "a virus", "immune dysfunction", "malingering", or "mere depression". Instead, it should be recognised that the illness is likely to be multifactorial in origin. A broad perspective that encompasses medical, psychological, and social aspects of the individual's disability is more appropriate.

  No pharmacological agent has been reliably shown to be effective treatment for CFS. Management strategies are therefore directed at minimising impediments to recovery, notably, loss of aerobic fitness, disruption of the sleep-wake cycle, intercurrent depression and social isolation. These strategies, together with promotion of a clear understanding of the illness, are sometimes termed cognitive behavioural therapy (see Box 4.4).    

Physical activity

In the early stages of the illness, many people with CFS make the mistake of putting off chores or social engagements until they feel better, then pushing themselves too hard on "good days" to make up for lost time. The subsequent worsening of symptoms and delayed recovery can establish a cyclic pattern of illness and disability.

It is also important to discuss with the person with CFS the vicious circle whereby initial avoidance of physical activity may lead to longer-term avoidance of all activity.

In general, people with CFS should begin by undertaking physical and intellectual tasks in divided sessions of relatively short duration, rather than engaging in extended periods of activity. As exercise tolerance improves, activity can be gradually increased. Graded exercise programs have been shown to be safe for people with CFS, and can improve both aerobic capacity and functional status.

An individualised management program should be carefully negotiated between the patient and doctor, with particular attention to:

Sleep

Unrefreshing sleep is extremely common in people with CFS. Although they usually report an increased total sleep time, typically it has a broken and restless pattern. A shift from regular night-time sleep to day-time naps and a late-night to late-morning sleep cycle is also common.

It is known that this type of disruption to a healthy sleep pattern can induce prolonged symptoms in healthy volunteers, including prominent fatigue, musculoskeletal pain, irritability and concentration impairment.

Restoration of a regular, unbroken, night-time sleep of about eight hours duration should be a goal of management of people with CFS. This goal may be achieved by:

Some people develop habituated patterns of "phase-shifted" sleep (typically midnight to midday), or of initial insomnia (spending several hours in bed before falling asleep). These patterns may require a structured sleep hygiene program to restore a more normal regimen. In general, such sleep interventions in people with CFS can significantly reduce symptoms and improve functional capacity. Where appropriate, the advice of a specialist sleep physician should be sought.

Symptomatic drug treatment

No medication has yet been demonstrated to provide long-term remission or "cure" in people with CFS. However, there is a place for symptomatic treatment for relief of specific symptoms if they are sufficiently distressing. As such treatments for CFS are empirical, each patient should be monitored carefully to ensure that the treatment offers more symptomatic benefits than harmful side effects.

People with CFS may have increased susceptibility to drug side effects, and it is generally wise to begin with small doses when introducing potent agents to a patient whose response cannot be predicted.

Although depression is a common symptom in people with CFS, the illness as a whole cannot be attributed simply to major depression. Hence, antidepressant drugs do not provide a panacea for CFS. At least one agent (fluoxetine) has been specifically shown to be ineffective.

However, the antidepressant group of drugs includes several different classes of pharmacological agents, each of which may have particular activity in relation to one or more symptoms of CFS, such as subjective energy (moclobemide), sleep disturbance (amitryptyline, nefazodone), muscle and joint pain (amitryptyline), concentration (moclobemide), and depressed mood (sertraline, paroxetine, nefazodone).

A reasonable approach is to consider undertaking a therapeutic trial of a selected drug based upon this broad pattern of effects on brain function. Given that these drug therapies are increasingly varied and complex, there is an important role for the specialist physician or psychiatrist to guide the choice of drugs and their monitoring.

In people with the overlapping syndrome of fibromyalgia the use of symptomatic treatments such as analgesics and NSAIDs, in combination with tricyclic agents, can be effective in improving sleep and reducing pain.

Psychological and social support

As with other chronic illnesses, managing people with CFS requires consideration of the psychological and social impacts of the illness. People with CFS may be unable to continue full-time work, so financial difficulties may rapidly develop. Similarly, CFS frequently disrupts high school or university studies.

A successful return to work or school after a prolonged illness with CFS often requires a rehabilitation program incorporating medical treatments, psychological support and occupational therapy, and the doctor may need to coordinate the help of other health care and educational professionals to implement this where appropriate.

Consideration should also be given to the impact of the illness on the person's family. In some circumstances it may be useful for people with CFS to bring their spouse or partner to a consultation, both to help them better understand the illness, and to discuss their difficulties in coping. Parents of children and adolescents with CFS should be seen regularly, and may require additional support and counselling.

Doctors should be prepared to act as advocates for their patients in negotiations with employers, educational institutions and social welfare organisations. For instance, part-time work or school alternatives may need arranging, or disability allowances may need to be sought.

Joining a patient support group may be valuable for some people. CFS Societies can offer individual and group support, education, and advice regarding access to social welfare agencies. Support groups also provide an opportunity for individuals to exchange information on how to cope with the many practical day-to-day difficulties which arise for those living with this debilitating condition.






4.4: Breaking vicious circles - a rationale for therapy



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

Support groups have become an important adjunct to medical practice by providing services that traditionally have been poorly catered for within the health care system. They can:

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.

Sharpe M, Hawton K, Seagroatt V, Pasvol G. Follow up of patients presenting with fatigue to an infectious diseases clinic. BMJ 1992; 305: 147-152. PubMed abstract





C: Support and resources for people with CFS
CFS = chronic fatigue syndrome; HACC = home and community care.