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Forum Psychiatry Understanding chronic fatigue syndrome Maria Frampton advises on diagnosis and treatment of chronic fatigue syndrome CHRONIC FATIGUE SYNDROME (CFS) is a debilitating and complex disorder characterised by profound mental and/or physical fatigue present for at least six months. It is not improved by bedrest and may be worsened by physical or mental activity. The cause or causes are unknown and there is no specific diagnostic test. People with CFS usually function at a lower level of activity than they were capable of before illness onset. Given that fatigue forms part of the symptom complex of many illnesses, it is important to exclude other treatable conditions before a diagnosis of CFS is made. Alternative names for the disorder are: yuppie flu; myalgic encephalomyelitis; postviral fatigue syndrome; chronic fatigue and immune dysfunction syndrome (CFIDS). Characteristic features In addition to the key defining characteristics of persistent or excessive tiredness and postexertional malaise (flu-like symptoms) lasting more than 24 hours, patients report many non-specific symptoms. These include cognitive impairment affecting attention, concentration and short-term memory; and sleep disturbance such as insomnia, hypersomnia or disturbed sleep/wake cycle. Pain is persistent and may be muscular, rheumatic or neuropathic. Recurrent sore throat, gastrointestinal disturbances such as nausea, loss of appetite, abdominal pain/bloating, diarrhoea and constipation, intolerance of alcohol, food, medications or ‘multiple chemical sensitivity’ may also be seen. Neurological or endocrine symptoms such as temperature disturbance, dizziness, increased sensitivity to sensory stimuli, blackouts, atypical convulsions and loss of speech may occur. Epidemiology CFS has also been called ‘yuppie flu’ because those who originally sought help for and generated interest in CFS in the early 1980s were mainly well-educated women in their 30s and 40s. 46 FORUM February 2004 CFS affects twice as many women as men. The age of onset in the majority of adult cases is early 20s to mid-40s while in children it is 13-15 years, though children as young as five years have been diagnosed. A report recently published by the British Department of Health gives prevalence figures of 0.2%-0.4% for the general population. Aetiology While the cause or causes remain unknown, there is evidence for predisposing, triggering and maintaining factors in the aetiology of CFS. Predisposing factors include: • Female gender • Family: familial incidence is higher than expected • Personality: tendency towards high standards and perfectionism • Previous mood disorder • Other disorders: some patients have a history of fibromyalgia or irritable bowel syndrome. Triggering factors include: • Infections: certain infections are more likely than others to act as triggers for CFS. The prime candidates, glandular fever (Epstein Barr virus), viral meningitis and viral hepatitis are followed by CFS in approximately 10% of cases • Immunisations: there have been a few case reports of post immunisation CFS, though intercurrent infection may have played a part • Life events such as redundancy • Physical injury or overtraining among sports people. Maintaining factors include • Sleep problems: sleep disturbance exacerbates fatigue and other symptoms • Mood disorders: about two-thirds of patients have comorbid anxiety and depression • Inactivity: can result in physical deconditioning of muscles • Overactivity: can result in worsening of symptoms • Latrogenic illness: delay in diagnosis or failure to provide Forum supportive care causes additional stress • Beliefs about CFS: strongly held beliefs about the cause of the illness can hinder progress, a positive attitude towards the illness and its treatment results in the best outcome. Clinical evaluation This involves: • A thorough clinical history is essential for reaching a diagnosis focusing on current disability as compared to previous level of functioning. • Sleep evaluation in order to exclude a primary sleep disorder such as sleep apnoea • Mental health evaluation focusing on the patient’s mental state and their psychosocial history • A physical examination which helps exclude other physical conditions • Basic laboratory investigations including full blood count, biochemistry, c-reactive protein (normal is <10), thyroid function and urinalysis. • More specific tests for differential diagnosis including blood markers for rheumatic disease and antibodies to gliadin or endomysium as occur in coeliac disease. It may be helpful to do (neuro)psychological testing to assess the impact of the disease on the patient’s cognitive function, eg. attention, concentration and short-term memory. This is particularly relevant to children and adolescents whose educational needs require attention. While the initial assessment may be undertaken by the primary care team, confirmation of diagnosis or a second opinion can be sought from an expert in the area – a consultant psychiatrist, immunologist or in rehabilitative medicine in the case of adult patients and a paediatrician for children. Management There is no ‘cure’ for CFS, however most achieve some degree of improvement with time and treatment. Each patient should have a unique and flexible management plan tailored to need. The most important aspect of care is providing advice on symptom relief, balancing rest and activity and maximising potential. In primary care, this usually involves advice on medication, pacing and basic lifestyle management. The three forms of therapy for which there is some evidence of benefit in patients with CFS are: • Graded exercise therapy • Cognitive behaviour therapy • Pacing. Graded exercise therapy is a structured and supervised programme of gradual and progressive increase in aerobic activities. It is based on the theory that inactivity and its consequent physical deconditioning maintain illness and that graded, supervised exercise can reverse this process. Controversy over this treatment stems from the view held by some physicians that these patients have a primary disease process that could actually progress with graded exercise. Cognitive behaviour therapy (CBT) is a form of psychotherapy that focuses on identifying and finding strategies for managing current problems. It does not pursue underlying physical and psychological causes but rather Psychiatry seeks to explain the aetiology and maintenance of the condition. Through the modification of behaviour (eg. stress levels, excess alcohol, smoking,) and belief systems, CBT aims to empower individuals to improve their own general well-being. Pacing is a strategy for managing energy in order to achieve a balance between rest and activity. The aim is to prevent a ‘vicious cycle’ of overactivity and setbacks. Despite a lack of evidence to suggest harmful effects, some clinicians are of the opinion that like graded exercise therapy, it may perpetuate the illness. Pacing however remains very popular amongst patients. Counselling, symptom control and complementary approaches Providing a supportive environment which allows the opportunity to explore, clarify and work towards resolving personal issues may benefit some individuals. Further research is needed to evaluate the benefits of counselling. Symptoms commonly causing the greatest problems in patients with CFS include: • Sleep • Mood disturbance • Pain. In addition to relaxation techniques, anxiety management, massage, meditation or yoga, medication may be needed to prevent further deterioration. Though antidepressants don’t help CFS on its own, they may be beneficial in the treatment of co-morbid symptoms such as anxiety, depression or sleep disorder. If anxiety or depression are associated with excessive sleeping an energising antidepressant such as a selective serotonin reuptake inhibitor (sertraline, fluoxetine or paroxetine) may be helpful. However, if mood disturbance is accompanied by a lack of sleep, a sedative antidepressant (trazodone or lofepramine) is more useful. In the case of sleep disturbance occurring without mood disorder, sedative antihistamines (cyproheptadine, promethazine) or low dose hypnotic antidepressants (dothiepin 25mg-50mg, amitriptyline 10mg-30mg) are beneficial in improving slow wave (deep healing) sleep. People with CFS tend to be very sensitive to side effects from centrally acting drugs, and should therefore be started on the lowest possible dose which should be gradually increased. All medication should be chosen with due consideration to side-effect profile, tolerance and potential for interaction with concomitant medications. Prognosis The course of CFS varies from person to person. While most people show some degree of improvement with treatment over time, a minority become permanently disabled. A gradual and progressive deterioration is not usual in CFS and should always merit further investigation to ensure no other physical illness has been missed. Finally, education and involvement of family and friends in the treatment plan can be vital to success. f Maria Frampton is consultant in old age psychiatry for Carlow/Kilkenny FORUM February 2004 47