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Chronic fatigue immune dysfunction syndrome

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is a syndrome of unknown and possibly multiple etiology, affecting the central nervous system (CNS), immune, and many other systems and organs. Most definitions other than the 1991 UK "Oxford", require a number of features, the most common being severe mental and physical depletion, which according to the 1994 Fukuda definition is "unrelieved by rest", and is usually made worse by even trivial exertion (controversially the Oxford and Fukuda require this to be optional only). more...

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However patients usually contend that they have many, often severe symptoms which are far more onerous, such as pain, muscle weakness, loss of brain function, hypersensitivity, orthostatic intolerance, immune and in some cases life-threatening cardiac and respiratory problems, and it is these symptoms exacerbated by extremely low stamina that cause greatest suffering, not "fatigue", which more properly describes a normal state of recovery unrelated to pathology. Some cases resolve or improve over time, and where available, treatments bring a degree of improvement to many others.

History

Originally studied since the late 1930s as an immunological neurological disorder under the medical term "myalgic encephalomyelitis" (ME), CFS has been classified by the World Health Organization (WHO) as a disease of the central nervous system since 1969. In 1992 and early 1993 the terms "post-viral fatigue syndrome" (PVFS) and "chronic fatigue syndrome" (CFS) were added to ME under the exclusive ICD-10 designation of G93.3.

Nomenclature

There are a number of different terms which have been at various times identified with this organic neuroimmune disorder.

  • Myalgic encephalomyelitis (ME, "inflammation of the brain and spinal cord with muscle pain") as a disease entity has been recognized and described in the medical literature since 1938, with the seminal paper being that by Wallis in 1957; Sir Donald Acheson's (a former Chief Medical Officer) major review of ME was published in 1959; in 1962 the distinguished neurologist Lord Brain included ME in his textbook of neurology, and in 1978 the Royal Society of Medicine accepted ME as a distinct clinical entity. In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder. Opponents to the term ME maintain there is no inflammation and that not all patients report muscle pain. United Kingdom and Canadian researchers and patients generally use this term in preference to CFS.
  • Chronic fatigue syndrome (CFS); this name was introduced in 1988 by a group of United States researchers based at the Centers for Disease Control and Prevention, and is used increasingly over other designations, particularly in the United States.
  • Chronic fatigue immune dysfunction syndrome (CFIDS); many people, especially patients in the United States, use the term CFIDS (pronounced ), which was originally an acronym for the above or "Chronic Fatigue & Immune Dysregulation Syndrome". This term was introduced by patients current with the biomedical research in an attempt to reduce the psychiatric stigma attached to "chronic fatigue", as well as the public perception of CFS as a psychiatric syndrome.
  • Post-viral syndrome (PVS or PVFS); this is a related disorder. According to original ME researcher Dr. Melvin Ramsay, "The crucial differentiation between ME and other forms of post-viral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post-viral fatigue states" (Ramsay 1989).
  • Chronic Epstein-Barr virus (CEBV) or Chronic Mononucleosis; the term CEBV was introduced by virologists Dr. Stephen Straus and Dr. Jim Jones in the United States. The Epstein-Barr virus, a neurotropic virus that more commonly causes infectious mononucleosis, was thought by Straus and Jones to be the cause of CFS. Subsequent discovery of the closely related human herpesvirus 6 shifted the direction of biomedical studies, although a vastly expanded and substantial body of published research continues to show active viral infection or reinfection of ME/CFS patients by these two viruses. As these viruses are also found in healthy controls, however, it is uncertain what role they play in CFS.
  • Low Natural Killer cell disease; this name is used widely in Japan. It reflects research showing a reduction in the number of natural killer cells in many CFS patients.
  • Yuppie Flu; this was a factually inaccurate nickname for CFS, first published in a November 1990 Newsweek article. It reflects the belief that CFS mainly affects the affluent ("yuppies"), and implies that it is a form of malingering or burnout. CFS, however, affects people of all races, genders, and social standings, and this nickname is inaccurate and considered offensive by patients. It is likely that this article contributed to the damaging public (and even medical) perception of CFS as a psychiatric or even psychosomatic condition.
  • Uncommonly used terms include Akureyri Disease, Iceland disease (in Iceland), Royal Free disease (after the location of an outbreak), raphe nucleus encephalopathy, and Tapanui flu (after the New Zealand town Tapanui where a doctor who investigated the disease lived).

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Chronic Fatigue Syndrome
From Journal of Rehabilitation, 1/1/00 by Tracy S. Swenson

An outbreak of a puzzling fatiguing illness in northern Nevada in 1984 was a beginning for the later named chronic illness: Chronic Fatigue Syndrome (CFS)(Holmes, Kaplan, & Steward, 1987 as cited in Friedberg, 1996). CFS is a relatively new name for a disorder, of unknown etiology, characterized by debilitating fatigue and other somatic and neuropsychiatric symptoms (Farrar, Locke, & Kantrowitz, 1995). In 1988 CSF was first recognized as a diagnostic entity by the Center for Disease Control (CDC) (Holmes et al., 1988 as cited in Anderson & Ferrans, 1997). Previous to this, CFS was referred to as myalgic encephalomyelitis (ME), neuromyasthenia, post viral fatigue syndrome, chronic Epstein-Barr virus/mononucleosis syndrome, Icelandic disease, Akureyri disease, royal free disease, chronic brucellosis, and fibromyalgia syndrome (Farrar et al., 1995; Schweitzer, Kelly, Fordan, Terry, & Whiting, 1995).

Historically, CFS resembles, quite strikingly, the 19th Century condition known as neurasthenia. Some theorize that CFS has arisen for socioeconomic and cultural reasons reflecting the particular circumstances of the late 20th Century (Farrar et al., 1995). A contemporary "rival" of neurasthenia, historians say, CFS has been marked by its occurrence during a social transformation time in the role of women. Over the past two decades, the rapidly changing role of women may have created an impossible set of cultural expectations to achieve in the workplace, to nurture a family, and to embrace social commitments (Friedberg, 1996). From childhood to adulthood, women learn that their roles in family and society are caregivers, mothers, wives, and sexual partners (Tarvis, 1992). Our culture wrestles with the expanding role of women and the mismatch between women's ambitions and social possibilities (Abbey & Garfinkel, 1991). In our society today women constitute 48% (nearly half) of the U.S. workforce (Boston Women's Health Book Collective, 1998). The combination of unpaid work in the home and paid work outside the home affects women's overall health (Boston Women's Health Book Collective, 1998). Cultural and societal expectations don't yet counterbalance women's movement into the working force with expectations of families to redefine the balance of responsibilities on their home front. Women feel conflicted about the balancing of their working lives and careers with their family obligations and personal well-being. The diagnosis of CFS provides a legitimate "medical" reason for their fatigue, emotional distress, and associated psychophysiological symptoms and allows them to withdraw from situations they find intolerable on the basis of illness rather than their own volition (Abbey & Garfinkel, 1991). With this influence CFS could be interpreted as a "cultural idiom of distress" or a form of culturally sanctioned illness behavior which historically parallels interpretations of the 19th Century conditioned know as neurasthenia (Kleinman, 1988 as cited in Abbey & Garfinkel, 1991).

Controversy regarding all aspects of CFS (its definition, etiology, treatment, and pathogenesis) continues to affect the medical community and rehabilitation of patients with CFS.

Prevalence

Twenty percent of all medical visits to primary care clinics involve a complaint of significant fatigue (Friedberg, 1996). If fatigue is persistent and debilitating, and cannot be identified as a symptom of a known medical or psychological condition, an evaluation for CFS is indicated (Friedberg, 1996). CFS has been reported in North America (U.S., Canada), Europe (Britain, France Germany, Italy, Spain, Sweden), Israel, Japan, Australia, and New Zealand (Farrar et al., 1995). Reported incidence of CFS suggests that women are diagnosed two to three times more frequently than men (Straus et al., 1988 as cited in Anderson & Ferrans, 1997). One study estimated prevalence of CFS ranging from three to 10 in 1,000 (0.3% to 1.0%) depending on whether the case definition used was British, Australian, or that of the Center for Disease Controls (CDC) (Farrar et al., 1995). The CDC surveillance project (1989-1991) reported prevalence rates ranging from 2.0 to 7.3 cases per 100,000 (0.002% to 0.007%) in the U.S. (Gunn, Connell, & Randall, 1993 as cited in Farrar et al., 1995). Other reported prevalence is varied depending on the year the study was done and what case definition of CFS was used.

Definition

There are three case definitions of CFS in use. The definition used in the US currently is the 1994 revised Centers for Disease Control (CDC) criteria, which is a revision of the original 1988 CDC definition. The two other definitions of CFS are the U.K. (Oxford) criteria and the Australian criteria (Wessely, Chalder, Hirsh, Wallace, & Wright, 1996).

The CDC 1994 definition of CFS is defined by two criteria. The first criterion is the new onset of persistent unexplained fatigue that is not the result of ongoing exertion, is not alleviated by rest, and results in substantial reduction in previous levels of work, study, social, or personal activities. The persistent fatigue is not attributable to any identifiable medical condition. The second criterion is the occurrence of four of the following symptoms that have persisted over six or more months: (a) impairment in short-term memory or concentration resulting in substantial reduction in previous levels of work, study, social, or personal activities; (b) muscle pain; (c) sore throat; (d) multi-joint pain; (e) tender neck or axillary lymph nodes; (f) headache of a new type, pattern, or severity; (g) unrefreshing sleep; and (h) post-exertional malaise lasting more than 24 hours (Friedberg, 1996). The case definition excludes a diagnosis of CFS if a diagnosis of major depression with melancholic or psychotic features was present at any time in the patient's life. Also, alcohol or other substance abuse within two years prior to the onset of the chronic fatigue and any time afterward is an exclusion criterion (Friedberg, 1996).

CFS has a sudden onset marked by an acute viral or mononucleosis-like illness that doesn't resolve (Farrar et al., 1995). The etiology and pathogenesis remain poorly understood (Fischler, Michiels, Cluydts, Kaufman, & De Meirleir, 1997). The age of onset is primarily the late 20s to late 30s (Friedberg, 1996). The illness duration has been noted on the average of between 2.5-7.5 years (Farrar et al., 1995; Friedberg, 1996). Key points worthy of emphasis include the following: 1) CFS is not fatal; 2) symptoms often improve with time; 3) even though there is not cure, a large variety of interventions may prove helpful; and 4) the course of the illness is often punctuated by a series of remissions and relapses (Kantrowitz, Farrar, & Locke, 1995)

Causes

Varied theories have been proposed regarding the etiology of CFS. Few researchers believe that a single theory can account for the complexity seen in patients diagnosed with CFS; a multi-factorial etiology is most likely (Farrar et al., 1995; Ray, Jefferies, & Weir, 1995). Commonly proposed theories of etiology include a persistent viral infection, primary muscle disorder, chronic immune dysfunction, neuroendocrine disorder, primary sleep disorder, and neuropsychiatric disorders (Farrar et al., 1995).

Persistent viral infection theory has reported that patients may have chronic Epstein-Barr virus infection, chronic enterovirus (coxsackie virus) infection, human herpes virus type 6 (HHV-6) infection, or human T-lymphotrophic virus type II (HTLV-II) retrovirus infection. Other virus reports in relation to CFS are cytomegalovirus, hepatitis A, varicella zoster, influenza, and rubella. However, many patients with CFS have no clinical or laboratory evidence of viral infections (Farrar et al., 1995; see also Feiden, 1990; Goldstein, 1993).

Primary muscle disorder was proposed secondary to the prominence of muscle fatigue and muscle pain in patients with CFS. Research was unable to show a specific metabolic abnormality in skeletal muscle of patients with CFS (Farrar et al., 1995).

Chronic Immune Dysfunction model was proposed secondary to a broad range of minor abnormalities in the immune system reported in patients with CFS. The precipitating infection commonly seen at the onset of CFS, as well as a high association with allergies in patients with CFS, are factors supporting this model. However, it is conceivable that immunologic abnormalities seen in patients with CFS are at least partly due to depression (Farrar et al., 1995; see also Berne, 1995; Feiden, 1990; Goldstein, 1993).

Neuroendocrine disorder was proposed on the basis that patients with CFS have a functional abnormality of the hypothalamic-pituitary system causing a secondary impairment of adrenal function. This theory lead to evidence that distinguishes patients with CFS from patients with primary depression. However, this evidence is far from certain (Farrar et al., 1995; see also Goldstein, 1993).

Primary sleep disorder was suggested based on symptomatology and research finding that most patients with CSF have sleep disorders which contribute to daytime fatigue. Research has found that a disruption of the circadian rhythm itself contributes significantly to the pathophysiology of CFS (Farrar et al.,1995).

Three theoretical models of psychiatric causation have been cited: primary depression, somatization, and stress. Each area proposed contributing factors of CFS but no model had valid, concrete evidence of an etiological basis (Berne, 1995; Farrar et al., 1995; Feiden, 1990; Goldstein, 1993).

Diagnosis

Diagnostic criteria that defines CFS was mentioned earlier in the CDC 1994 definition. Commonly excessive fatigue and/or a persistent viral infection or flu is what brings patients in to seek medical attention (Friedberg, 1996). Fatigue is a symptom commonly presented to physicians. The presentation of symptoms and the severity of functional disturbances is varied in each individual case, but the cardinal sign in CFS is debilitating fatigue that is easily exacerbated in daily functioning (Anderson & Ferrans, 1997).

An essential first step in diagnosis is a rigorous exclusion of alternative medical and psychiatric diagnoses (Farrar et al., 1995). Physicians concerned about organic diseases will typically order a large battery of tests, all of which are negative (Kantrowitz et al., 1995). Clinical examinations, as well as laboratory investigations usually fail to demonstrate specific abnormalities (Farrar et al., 1995). If fatigue is debilitating and persistent and cannot be identified as a symptom of a known medical or psychological condition, an evaluation for CFS is indicated (Friedberg, 1996). A referral to a psychologist may be given depending on the emotional disturbances expressed by the patient (Kantrowitz et al., 1995).

It is important to note that because of the wide spread professional and public disbelief of CFS, patients are encouraged to "doctor shop" and/or contact local CFS support group organizations for assistance in finding a physician who is both knowledgeable about CFS and sensitive to these patients' concerns (Friedberg, 1996; Kantrowitz et al., 1995).

A diagnosis of CFS is appropriately made by a physician, who initially rules out other medical conditions that would explain the fatigue symptomatology and then uses the 1994 CDC criteria to establish a diagnosis of CFS (Friedberg, 1996). A psychologist can confirm the diagnosis of CFS by matching symptoms reported by the patient to the 1994 CDC criteria list as well. Another important aspect of psychological assessment involves the differential diagnosis of CFS and depression. Most research has found diagnostic overlap regarding CFS and depression (Anderson & Ferrans, 1997; Berne, 1995; Feiden, 1990; Fischler et al., 1997; Friedberg, 1996; Goldstein, 1993; Joyce et al., 1996; Schweitzer et al., 1995; Wearden & Appleby, 1997; Wessely et al., 1996).

Another comorbid diagnosis with CFS is fibromyalgia (FM). The symptom complexes of FM and CFS have much in common (Farrar et al., 1995; Fischler et al., 1997). One study reported up to 70% of patients with CFS experience comorbid FM (Fischler et al., 1997). In an attempt to remedy this confusion, the American College of Rheumatology has defined FM as widespread bodily pain together with pain on digital palpation in 11 to 18 tender point sites, but not including fatigue, or stiffness of swollen joints among the diagnostic criteria (Farrar et al., 1995).

In order for the practitioner to gain more individual information regarding the impact of CFS on their patients' lives, several questionnaires have been cited for use. These include: The Profile of Fatigue Related Symptoms, The Hospital Anxiety and Depression Scale, The Illness Management Questionnaire, the COPE scales, Sickness Impact Profile, Fatigue Questionnaire, General Health Questionnaire, Chronic Fatigue Syndrome Checklist, and Somatic Symptom Checklist (Ray et al., 1995; Schweitzer et al., 1995; Wessely et al., 1996).

Psychiatric Diagnostic Overlap

An area of continued controversy and debate involves the common diagnostic overlap between CFS and psychiatric disorders. From 50% to 70% of patients with CFS fulfill operational criteria for a psychiatric disorder: most commonly depression, followed by anxiety and somatization disorder (Farrar et al.,1995; see also Anderson & Ferrans, 1997; Berne, 1995; Feiden, 1990; Joyce et al., 1996; Schweitzer et al., 1995). Most research has found that 25% to 50% of patients with CFS have had psychiatric challenges, such as major depression, prior to the onset of their illness (Farrar et al., 1995; see also Anderson & Ferrans, 1997; Berne, 1995; Wessely et al., 1996). Does CFS occur in persons with premorbid vulnerabilities to depression? Is there an underlying psychological predisposition toward the development of CFS? Is CFS an independent entity or does pure CFS remain associated with having a probable psychiatric disorder as some studies indicate (Wessely et al., 1996)? Could coping with a chronic illness, such as CFS, explain the high prevalence of depressive symptoms in these cases? Could CFS be an abnormal response to physiological or psychological stressors or negative life events (Farrar et al., 1995)? Many unanswered questions plague the understanding and interpretation of CFS.

Clinical features of CFS include various neuropsychiatric symptoms which may include depression, anxiety, difficulties with concentration, and memory and sleep disturbances (Farrar et al., 1995). However, the CDC criteria for definition of CFS excludes a diagnosis of CFS if a diagnosis of major depression with melancholic or psychotic features was present at any time in the patient's life (Friedberg, 1996). Changes from the original 1988 CDC case definition of CFS to the current 1994 case definition were influenced by the controversy regarding psychiatric disorder overlap in diagnosis. Symptoms that are shared by CFS and depression include fatigue, sleep disturbances, and poor concentration. But several CFS symptoms that are not commonly found in primary depression include joint pains, recurrent sore throats, pressure-like headaches, and prolonged fatigue after exercise (Friedberg, 1996).

It is important to remember that severe persistent fatigue is the cardinal symptom of CFS. The high prevalence of depressive symptoms in patients with CFS has made it impractical to exclude all patients with depression (Farrar et al., 1995). Instead of being caught up in the debate regarding depression and CFS, it is more important to recognize and understand the interaction of depression and illness behaviors in patients' with CFS quality of life (Schweitzer et al., 1995). Individuals with CFS are highly sensitive to skeptical attitudes that might delegitimize their suffering (Friedberg, 1996). Debate over a physical vs. psychiatric cause for CFS could negatively affect the illness severity as well as the role of recovery in these clients.

Treatment

No specific treatment has been defined for patients with CFS. Only palliative treatment exists (Anderson & Ferrans, 1997; see also Berne, 1995; Feiden, 1990). Commonly, trial and error of many treatment options is used. As mentioned earlier, it is important to look at each case individually. What may work for one client with CFS may not be effective for another. The following will explore treatment options as presented by studies of CFS over the past two decades. Treatment options will be grouped in the following areas: cognitive behavior therapy; pharmacological treatment; medically oriented therapy; and alternative therapies.

Cognitive Behavior Therapy

Because it has been hypothesized that intensity of depression, somatic symptoms, and disability are associated with physical fatigability (a hallmark symptom of CFS), and avoidance of demanding tasks, cognitive behavioral therapy (CBT) for the treatment of CFS has been widely supported (Anderson & Ferrans, 1997; Fischler et al., 1997; Friedberg, 1996; Kantrowitz et al., 1995; Ray et al., 1995). Cognitive behavioral therapy has been based on the premise that psychologically maintaining variables in CFS can be reversed with an active behavioral intervention that is based on graduated activity and exercise schedules combined with desensitization of phobic avoidance of CFS symptoms (Friedberg, 1996). Significant reductions in depression, stress, and fatigue severity were found with treatment focused on an acquisition of cognitive and behavioral coping skills, identification of symptom relapse triggers (such as stress and/or environmental conditions), activity modification to minimize setbacks, and stress reduction and relaxation techniques (Friedberg, 1996). In CFS, specific goals of CBT tend to be behavioral change, combined with the cognitive alteration of negative ways of thinking and solving social, family, and personal problems that may be reinforcing the patient's disability (Kantrowitz et al., 1995). Cognitive behavior interventions continue to be studied but it is clear that intervention of this kind is an important, if not essential, aspect of the treatment of CFS.

Pharmacological Treatment

Along with CBT, physicians will prescribe medications such as tricyclic antidepressants and serotonin reuptake blockers to assist in the management of anxiety and depression, as well as CFS symptoms of sleep disturbance, headaches, body pains, and fatigue (Friedberg, 1996). Fluoxetine has been shown to improve symptoms in non-depressed patients with CFS (Goodnick & Sandoval, 1993 as cited in Friedberg, 1996). Other medications that have been cited in studies include cyclobenzaprine for musculoskeletal complaints, monoamine oxidase inhibitors for patients with atypical depression and over-the-counter analgesics such as acetaminophen or ibuprofen for flu-like symptoms and muscle aches (Kantrowitz et al., 1995). Antiviral and immunomodulatory drugs have also been tested. One study noted that patients with CFS are often sensitive even to subclinical dosages of prescribed drugs and may report adverse reactions (Friedberg, 1996).

Medically Oriented Therapy

Physical therapy, therapeutic massage, and therapeutic exercise including pool therapy have been cited as medically oriented therapies for patients with CFS.

Physical therapy sessions are directed toward reducing pain with therapies such as gentle stretching techniques, myofascial release techniques, ultrasound, and application of heat or cold or both. Deep therapeutic massage can also aid in pain reduction (Kantrowitz et al., 1995). The applicability of physical exercise for patients with CFS is an unresolved issue (Friedberg, 1996). However, significant deconditioning in a patient with CFS can negatively affect recovery. Initially, walking and/or pool therapy are usually safe ways to begin an exercise program (Friedberg, 1996). Treadmills, exercise bikes, and cross-country ski machines have also been cited to prove popular and helpful (Farrar et al., 1995). If patients cannot exercise at all, especially in the initial phase of their illness, they should be encouraged to try again once they are feeling better (Kantrowitz et al.,1995). Other medical treatments that have been investigated for patients with CFS are intramuscular dialyzable leukocyte extract, intravenous immunoglobulin, acyclovir, vitamin B, intramuscular magnesium, and essential fatty acid therapy (Kantrowitz et al., 1995). Proof of the effectiveness of these treatments has not yet been established.

Alternative Therapies

Many alternative therapies have been tried with patients with CFS but none has yet been subjected to randomized clinical trials to prove their efficacy. Alternative therapies for patients with a CFS diagnosis have included: vitamins; coenzymes; minerals and other nutritional approaches; herbal remedies; homeopathy; naturopathy; anticardidal treatment; traditional Chinese medicine, including acupuncture, moxibustion, Chinese herbs and Qi Gong; Ayurvedic medicines; meditation and relaxation; detoxification therapies; and unproved immunologic therapies (Anderson & Ferrans, 1997; Berne, 1995; Feiden, 1990; Kantrowitz et al., 1995).

Continued research in the area of treatment is needed. No specific treatment guidelines are yet available for effective treatment for CFS (Kantrowitz et al., 1995; Farrar et al., 1995).

Functional Limitations

There is much variance in symptom presentation and severity as experienced by the patient with CFS. This ultimately is seen in functional limitations experienced by each individual. The following will highlight functional limitations as cited by research and individual patient expressions over the last two decades of study regarding individuals with a CFS diagnosis.

Function, in humans, is defined as the manner in which the individual can perform successfully the tasks and roles required for everyday living (Thomas, 1997). Function includes general cognitive functioning, social functioning, physical functioning, emotional functioning, and economic and vocational functioning. Specifically regarding individuals with CFS, interruption in their functioning varies. Symptoms were reported to be multiple, diverse, variable, and pervasive, and impacted all aspects of function for individuals with CFS. For this reason functional assessment of persons with CFS should include testing over a period of time with careful consideration of the impact of exertion on one's ability to perform (Anderson & Ferrans, 1997).

One patient describes the functional impact of her illness as follows: "It's as if it's finals week at school and you've been up for three nights straight. Then you drank six martinis. Then you tried to crash, but someone shot you full of espresso. So you're exhausted, hung-over, and now injected with a stimulant. You're exhausted but can't sleep, and you can't function. And it never goes away (Anderson & Ferrans, 1997)."

A quality of life study found 50% of patients with CFS name cognitive dysfunction as being the most disruptive symptom (Anderson & Ferrans, 1997). A study specifically on cognitive performance states that no clinically significant deficits or abnormalities were found in cognitive functioning for patients with CFS (Wearden & Appleby, 1997). However, this same study emphasized the importance of looking at the impact of depression and/or anxiety on cognitive failures in patients with CFS. Patients may be overestimating or improperly evaluating the extent of their cognitive failures (Wearden & Appleby, 1997). Another study did conclude that patients with CFS have reduced attentional capacity resulting in impaired performance on effortful tasks requiring planned or self-ordered generation of responses from memory (Joyce, Blumenthal, & Wessely, 1996). This study also emphasizes the importance of looking at how depression has impacted the subjective complaints of cognitive impairments.

One study claims that patients with CFS appear to be the most disadvantaged in relation to areas of social and role functioning (Schweitzer et al., 1995). Typically, individuals challenged with CFS can't maintain social relationships. Many reports support this finding. The need to frequently cancel plans because of unpredicted levels of functioning has a negative impact on relationships with friends, co-workers, and family (Anderson & Ferrans, 1997). Socially, patients with CFS find they can't engage in recreational/physical activities anymore. This has a profound impact on social functioning as well as mental health regarding the influence of social and family support on coping with a serious illness. One patient compares the numerous physical and functional losses to that of a singer's inability to speak above a whisper and the loss of ability to wash one's own hair, play the piano, or cut vegetables (Anderson & Ferrans, 1997).

Physical functioning is greatly affected in individuals with CFS (Anderson & Ferrans, 1997; Fischler et al., 1997; Friedberg, 1996; Schweitzer et al., 1995). Commonly, individuals are forced to completely stop all physically active pastimes initially (Schweitzer et al., 1995). Those who have attempted to engage in less active pastimes frequently encounter such difficulties as energy loss, problems in supporting their body and limbs, eye fatigue, and pain (Schweitzer et al.,1995)'. In order to not exacerbate symptoms, individuals with CFS are unable to do household chores, repair work, cleaning, and shopping. This, in turn, impacts on their emotional well-being and feeds into their comorbid state of depression. Physical limitations significantly affect patients with CFS role of functioning in their lives (Schweitzer et al., 1995). Mild exertion will often increase fatigue, and rest and sleep do not restore premorbid levels of energy (Friedberg, 1996). Cognitive behavioral views on functional status impairment in CFS suggests that the avoidance of activities

sustains symptoms by decreasing activity tolerance and increasing sensitivity to somatic sensations (Fischler et al., 1997).

Economically, individuals with CFS experience a loss as well. One study remarked that all participants with CFS experienced a reduction in either the quality and/or quantity of their work (Schweitzer et al., 1995). Mental and physical symptoms resulted in trouble meeting deadlines, producing more mistakes, and having to give up responsibilities of the job such as supervision and decision making (Schweitzer et al., 1995). Financial pressures created significant stress, which contributed to illness severity and perhaps a lack of recovery (Anderson & Ferrans, 1997; see also Berne, 1995; Feiden, 1990).

Coping with numerous losses such as physical and functional loss, economic and material loss, social loss, and personal identity loss significantly affects the emotional well-being of individuals with CFS (Anderson & Ferrans, 1997). With this intense impact on their lives it seems understandable that so many individuals diagnosed with CFS also experience clinical depression. One study states that coping affected functional impairment and emotional adjustment over and above the contribution of fatigue severity (Ray et al., 1995). A sense of hopelessness that is integral to the illness due to symptom variability, length of illness, and repeated relapses seems to plague many diagnosed with CFS (Anderson & Ferrans, 1997). In order for a practitioner to fully understand functional limitations of a individual with CFS, it is important to look at all aspects of function: general cognitive functioning; social and family functioning; physical and recreational functioning; emotional functioning; and economic and vocational functioning.

Accommodations

Accommodations made for a patient with CFS are dependent on the individual and how they are affected by their symptoms.

Making allowances in the work place such as frequent breaks, the time of day the client works, and/or decreased work schedule and workloads are examples of accommodations. Late morning or early afternoon is typically when symptoms are minimal or absent (Kantrowitz et al.,1995). Some patients with CFS have been allowed to take work home as an accommodation for more time needed for work. Having an assistant available to manage the more physical tasks of a given job may also serve as an appropriate accommodation. Assistance with scheduling, planning, and medication and appointment management may be a very useful accommodation for the client with CFS who experiences mental fatigue. Assisting with strategies for memory is another area where an accommodation could make a difference for a client with CFS. Providing education for the client as well as for the workplace regarding CFS may instill more comfort in coping with this disabling illness. Assisting a client with finding social support could be a valuable resource.

As mentioned earlier, there is much variance in symptom presentation and severity for the client with CFS. There are many unanswered questions regarding CFS. Accommodations are best made on an individual case basis covering all aspects of functioning for the client with CFS.

Conclusion

Both perceptions of CFS and approaches to CFS have experienced many changes since its initial appearance in the mid-80s. Decades later, all aspects of CFS are surrounded by unanswered questions. For these reasons, it is essential for medical professionals to keep themselves updated on current research and documentation regarding CFS for the best possible treatment and rehabilitation for the individual appropriately diagnosed with CFS.

References

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Anderson, J.S. & Ferrans, C.E. (1997). The quality of life of persons with chronic fatigue syndrome. The Journal of Nervous and Mental Disease, 185(6), 359-367.

Berne, K. (1995). Running on empty: The complete guide to chronic fatigue syndrome, California: Hunter House.

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Farrar, D. J., Locke, S.E., & Kantrowitz, F.G. (1995). Chronic fatigue syndrome: I. etiology and pathogenesis. Behavioral Medicine, 21 (1), 5-16.

Feiden, K. (1990). Hope and help for chronic fatigue syndrome. New York: Fireside.

Fischler, B., Dendale, P., Michiels, V., Cluydts, R., Kaufman, L., & De Meirleir, K. (1997). Physical fatigability and exercise capacity in chronic fatigue syndrome: Association with disability, somatization, and psychopathology. Journal of Psychosomatic Research, 42(4), 369-378.

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Kantrowitz, F.G., Farrar, D.J., & Locke, S.E. (1995). Chronic fatigue syndrome: II. Treatment and future research. Behavioral Medicine, 21 (1), 17-24.

Ray, C., Jefferies, S., & Weir, W.R.C. (1995). Coping with chronic fatigue syndrome: Illness responses and their relationship with fatigue, functional impairment and emotional status. Psychological Medicine, 25(5), 937-945.

Schweitzer, R., Kelly, B., Fordan, A., Terry, D., & Whiting, J. (1995). Quality of life in chronic fatigue syndrome. Social Science and Medicine, 41(10), 1367-1372.

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Wessely, S., Chalder, T., Hirsh, S., Wallace, P., & Wright, D. (1996). Psychological symptoms, somatic symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome: A prospective study in the primary care setting. American Journal of Psychiatry, 153(8), 1050-1059.

Tracy S. Swenson, MS, PT, LMT, Department of Rehabilitation Psychology and Special Education at the University of Wisconsin-Madison, Madison, WI 53706.

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