Reprinted from The CFIDS Association of Victoria, British Columbia.
Chronic Fatigue and Immune Dysfunction Syndrome
This complex and disabling disease is characterized by severe and overwhelming fatigue (never before experienced) and affects up to 90 million individuals, both adults and children, worldwide. It may cause patients to be bedridden for weeks, or even months; leaving them incapable of working or taking care of either themselves or their family. Symptoms may have a cyclical pattern of severity, and may last for months, years, or decades.
The cause of CFIDS is unknown, although research suggests an immune system dysfunction, triggered by viral infection, for which there is not yet universal treatment. It is an unfortunate characteristic of the illness that many patients appear healthy, so that they receive little of the understanding or respect accorded to those with "visible disabilities". In actual fact, however, studies have shown that CFIDS has one of the highest degrees of suffering of any illness - rivaling the physical misery of cancer and advanced cardiac disease.
In addition to abnormal fatigue, patients experience a number of neurological and physical symptoms. Among these are memory disturbance; mental confusion; difficulty with decision-making and concentration; vision and hearing difficulties; Problems with balance; light-headedness; and severe, unprovoked and inappropriate anxiety and mood changes. Other symptoms are headache of a type and intensity not previously experienced; severe muscle weakness; muscle and joint pain; heart rhythm irregularities; painful lymph nodes; gastrointestinal problems; significant weight gain or loss; and severe sleep disorders. Exercise tends to worsen symptoms and patients are exhausted by the slightest physical or mental activity. Extreme sensitivity to noise and light may also be present.
A previously energetic child developing CFIDS may become clinging and tearful, and exhibit both physical exhaustion and profound mood changes.
A good student may become dyslexic, or fail and require remedial classes. Young people sometimes develop the disease gradually, and symptoms may be dismissed as "growing pains" or "teenage complaints".
Diagnosis involves ruling out other diseases, which share fatigue as a symptom (such as multiple sclerosis, cancer, thyroid disorder, etc.), and it is important that this is undertaken by a physician familiar with CFIDS. Many patients have symptoms, which mimic those of depression, and this also needs to be excluded. (Although depression may occur as a result of the chronic illness).
Management techniques vary, and treatment of each case is highly individual - though all patients require large amounts of rest - particularly in the early stages. In addition, changes in life-style must be made, as individuals learn to monitor energy and activity levels to avoid debilitating relapses.
Living with an illness of unknown duration is incredibly stressful to all concerned, particularly as most CFIDS patients are highly motivated and find it difficult to adapt to loss of accustomed energy. Families frequently fail to understand the severity of the condition, finding it hard to believe that someone who looks so well is, in fact, incapable of all but minimal activity. These places additional stress on the patient, and may lead to family conflict and marriage breakup. Patients living alone are severely disadvantaged if they lack a network of friends or relatives able to help with household tasks, or to provide emotional support during an illness which may, at times, include anxiety and feelings of panic.
The most important factor in management of CFIDS therefore, is a supportive environment, a knowledgeable and understanding physician and family and friends who accept that the patient is unable to work, study, or otherwise live a normal functional life.