Myalgic Encephalomyelitis: Wikis

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Chronic fatigue syndrome
Classification and external resources
ICD-10 G93.3
ICD-9 780.71
DiseasesDB 1645
MedlinePlus 001244
eMedicine med/3392 ped/2795
MeSH D015673

Сhronic fatigue syndrome (CFS) is the most common name[1] given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.[2] The disorder may also be referred to as post-viral fatigue syndrome (PVFS, when the condition arises following a flu-like illness), myalgic encephalomyelitis (ME), or several other terms. The etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[2]

Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison.[3] Symptoms of CFS include widespread muscle and joint pain; cognitive difficulties; chronic, often severe, mental and physical exhaustion; and other characteristic symptoms in a previously healthy and active person. CFS patients may report additional symptoms including muscle weakness, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems.[4] It is unclear if these symptoms represent co-morbid conditions or are produced by an underlying etiology of CFS.[5] All diagnostic criteria require that the symptoms must not be caused by other medical conditions. The quality of life is "particularly and uniquely disrupted" in CFS.[6]

CFS is thought to have an prevalence of 4 adults per 1,000 in the United States.[7] According to the ME Association [8] it affects an estimated 250,000 people in the UK. For unknown reasons CFS occurs most often in people in their 40s and 50s, more often in women than men,[9][10] and is less prevalent among children and adolescents.[11] Full recovery from the condition occurs in only 5-10% of cases.[11]

Whereas there is agreement on the genuine threat to health, happiness and productivity posed by CFS, various physicians' groups, researchers and patient advocates promote different nomenclature, diagnostic criteria, etiologic hypotheses and treatments, resulting in controversy about many aspects of the disorder. The name CFS itself is controversial as many patients and advocacy groups, as well as some experts, want the name changed as they believe that it stigmatizes by not conveying the seriousness of the illness.[12]

Contents

Classification

Notable definitions include:[4]

  • CDC definition (1994)[13]—the most widely used clinical and research description of CFS,[5] it is also called the Fukuda definition and was based on the Holmes or CDC 1988 scoring system.[14] The 1994 criteria require the presence of four or more symptoms beyond fatigue, where the 1988 criteria require six to eight.[15]
  • The Oxford criteria (1991)[16]—includes CFS of unknown etiology and a subtype called post-infectious fatigue syndrome (PIFS). Important differences are that the presence of mental fatigue is necessary to fulfill the critera and symptoms are accepted that may suggest a psychiatric disorder.[4]

Using different case definitions may influence the types of patients selected[18] and there is research to suggest subtypes of patients or disease exist.[19][20][21][22] Clinical practice guidelines—with the aim of improving diagnosis, management, and treatment—are generally based on case descriptions. An example is the CFS/ME guideline for the National Health Service in England and Wales, produced in 2007 by the National Institute for Health and Clinical Excellence (NICE).[15]

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Naming

Chronic fatigue syndrome (CFS) is the most commonly used designation,[1] but widespread approval of a name is lacking.[23] Different authorities on the illness view CFS as a central nervous system, metabolic, infectious or post-infectious, cardiovascular, immune system or psychiatric disorder, and that different symptom profiles may be caused by a number of various disorders.[19]

Over time and in different countries many names have been associated with the condition(s). Aside from CFS, some other names used include Akureyri disease, benign myalgic encephalomyelitis, chronic fatigue immune dysfunction syndrome, chronic infectious mononucleosis, epidemic myalgic encephalomyelitis, epidemic neuromyasthenia, Iceland disease, myalgic encephalomyelitis, myalgic encephalitis, myalgic encephalopathy, post-viral fatigue syndrome, raphe nucleus encephalopathy, Royal Free disease, Tapanui flu and yuppie flu (considered pejorative).[24][25] Many patients would prefer a different name such as "myalgic encephalomyelitis", believing the name "chronic fatigue syndrome" trivializes the condition, prevents it from being seen as a serious health problem, and discourages research.[12][26][27]

A 2001 review referenced myalgic encephalomyelitis symptoms in a 1959 article by Acheson, stating ME could be a distinct syndrome from CFS, but in literature the two terms are generally seen as synonymous.[28] A 1999 review explained the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in 1996 advocated the use of chronic fatigue syndrome instead of myalgic encephalomyelitis or ME which was in wide use in the United Kingdom, "because there is, so far, no recognized pathology in muscles and in the central nervous system as is implied by the term ME."[1][29] The 1996 report received some acceptance, but also harsh criticism that patients' views had been excluded. In 2002, a Lancet commentary noted the recent report by the "Working Group on CFS/ME"[30] used the compromise name CFS/ME stating, "The fact that both names for the illness were used symbolises respect for different viewpoints whilst acknowledging the continuing lack of consensus on a universally acceptable name."[23]

Signs and symptoms

Onset

The majority of CFS cases start suddenly,[31] usually accompanied by a "flu-like illness"[5] while a significant proportion of cases begin within several months of severe adverse stress.[31][32][33] An Australian prospective study found that after infection by viral and non-viral pathogens, a sub-set of individuals met the criteria for CFS, with the researchers concluding that "post-infective fatigue syndrome is a valid illness model for investigating one pathophysiological pathway to CFS".[34] However, accurate prevalence and exact roles of infection and stress in the development of CFS are currently unknown. Many significant risk factors for developing CFS are known, but "definitive evidence that would be meaningful for clinicians is lacking".[35]

Symptoms

The most commonly used diagnostic criteria and definition of CFS for research and clinical purposes were published by the United States Centers for Disease Control and Prevention (CDC).[5] The CDC definition of CFS requires the following two criteria be fulfilled:[2]

  1. A new onset (not lifelong) of unexplained, persistent fatigue unrelated to exertion and not substantially relieved by rest, that causes a significant reduction in previous activity levels.
  2. Four or more of the following symptoms that last six months or longer:
  • Impaired memory or concentration
  • Post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness"
  • Unrefreshing sleep
  • Muscle pain (myalgia)
  • Pain in multiple joints (arthralgia)
  • Headaches of a new kind or greater severity
  • Sore throat, frequent or recurring
  • Tender lymph nodes (cervical or axillary)

There are no medical tests or physical signs to diagnose CFS,[11] so testing is used to rule out other potential causes for symptoms.[13] When symptoms are attributable to other conditions, the diagnosis of CFS is excluded. The CDC specifically refers to several illnesses with symptoms resembling those of CFS: "mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders. Medications can also cause side effects that mimic the symptoms of CFS."[2]

Activity levels

Patients report critical reductions in levels of physical activity[36] and a reduction in the complexity of activity has been observed,[37] with reported impairment comparable to other fatiguing medical conditions[38] such as late-stage AIDS,[39] lupus, rheumatoid arthritis, chronic obstructive pulmonary disease (COPD), and the effects of chemotherapy.[40] CFS affects a person's functional status and well-being more than major medical conditions such as multiple sclerosis, congestive heart failure, or type II diabetes mellitus[6][41] The severity of symptoms and disability is the same in both genders[42] with strongly disabling chronic pain,[43] but despite a common diagnosis the functional capacity of individuals with CFS varies greatly.[44] While some lead relatively normal lives, others are totally bed-ridden and unable to care for themselves. Employment rates vary with over half unable to work and nearly two-thirds limited in their work because of their illness. More than half were on disability benefits or temporary sick leave, and less than a fifth worked full-time.[45]

Pathophysiology

The mechanisms and pathogenesis of chronic fatigue syndrome are unknown.[11] Research studies have examined and hypothesized about the possible biomedical and epidemiological characteristics of the disease, including oxidative stress, genetic predisposition,[46] infection by viruses and pathogenic bacteria, hypothalamic-pituitary-adrenal axis abnormalities , immune dysfunction as well as psychological and psychosocial factors. Although it is unclear which factors are a cause, or consequence, of CFS, various models are proposed.[47][48][49]

A 2009 study suggested a link between the retrovirus xenotropic murine leukemia virus-related virus (XMRV) and chronic fatigue syndrome in the United States.[50] Three follow-up studies using different methodology were however unable to confirm this association.[51][52][53]

Treatment

Many patients do not fully recover from CFS even with treatment, and there is no universally effective curative option.[54] Diets, physiotherapy, dietary supplements, antidepressants, pain killers, pacing, and complementary and alternative medicine have been suggested as ways of managing CFS. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness for many patients in multiple randomized controlled trials.[28][55][56][57] As many of the CBT and GET studies required patients to visit a clinic, severely affected patients may have been excluded.[55]

Patient surveys have found that pacing is reported to be the most helpful intervention.[58]

Cognitive behavioral therapy

Cognitive behavioral therapy (CBT), a form of psychological therapy often used to treat chronically ill patients,[59] is a moderately effective treatment for CFS[60] that "can be useful in treating some CFS patients."[59] Since the cause or causes of CFS are unknown, CBT tries to help patients understand their individual symptoms and beliefs and develop strategies to improve day-to-day functioning.[61]

A Cochrane Review meta-analysis of 15 randomized, controlled cognitive behavioral therapy trials with 1043 participants concluded that CBT was an effective treatment to reduce symptoms of fatigue. Comparing CBT with "usual care," four reviewed studies showed that CBT was more effective (40% vs 26%). In three studies, CBT worked better than other types of psychological therapies (48% vs 27%). The effects may diminish after a course of therapy is completed; the reviewers write that "the evidence base at follow-up is limited to a small group of studies with inconsistent findings" and encourage further studies.[62] A 2007 meta-analysis of 5 CBT randomized controlled trials of chronic fatigue and chronic fatigue syndrome reported 33-73% of the patients improved to the point of no longer being clinically fatigued.[60] A 2010 meta-analysis of trials that measured physical activity before and after CBT showed that although CBT effectively reduced fatigue, activity levels were not affected by CBT and changes in physical activity were not related to changes in fatigue. They conclude that the effect of CBT on fatigue is not mediated by a change in physical activity.[63]

CBT has been criticised by patients' organisations because of negative reports from some of their members,[23] which have indicated that CBT can sometimes make people worse.[64]

Graded exercise therapy

Graded exercise therapy (GET) is a form of physical therapy. A meta-analysis of five randomized trials found that patients who received exercise therapy were less fatigued after 12 weeks than the control participants, and the authors cautiously conclude that GET shows promise as a treatment.[65] A systematic review published in 2006 included the same five RCTs, noting that "no severely affected patients were included in the studies of GET".[55] Surveys conducted on behalf of patient organizations commonly report adverse effects.[23][64][66][58]

Pacing

Pacing is an energy management strategy which encourages behavioral change while acknowledging patient fluctuations in symptom severity and delayed exercise recovery. Patients are advised to set manageable daily activity/exercise goals and balance activity and rest to avoid over-exertion which may worsen symptoms. Those able to function within their individual limits are encouraged to gradually increase activity and exercise levels while maintaining established energy management techniques. The goal is to gradually increase the level of routine functioning of the individual.[67] A small randomised controlled trial concluded that pacing had statistically better results than relaxation/flexibility therapy.[68][69] A 2009 survey of 828 Norwegian CFS patients found that pacing was evaluated as useful by 96% of the participants.[58]

Other

Other treatments of CFS have been proposed but their effectiveness has not been confirmed.[70] Medications thought to have promise in alleviating stress-related disorders include antidepressant and immunomodulatory agents.[71] The evidence for antidepressants is mixed[72] and their use remains controversial.[73] Many CFS patients are sensitive to medications, particularly sedatives, and some patients report chemical and food sensitivities.[74] CFS patients have a low placebo response compared to patients with other diseases.[75]

Prognosis

Recovery

A systematic review of 14 studies of the outcome of untreated people with CFS found that "the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%). Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome." .... "In five studies, a worsening of symptoms during the period of follow-up was reported in between 5 and 20% of patients." A good outcome was associated with less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause.[76] Another review found that children have a better prognosis than adults, with 54–94% having recovered by follow-up compared to less than 10% of adults returning to pre-morbid levels of functioning.[77] According to the CDC, delays in diagnosis and treatment can reduce the chance of improvement.[78]

Mortality

Two studies were published in 2006 that directly addressed mortality in CFS. One retrospective study of deaths in individuals chronicled on a memorial list from a national CFS support group reported a greater likelihood of death from heart failure, suicide, and cancer. The ages of death for these three conditions were significantly younger than in the general population respectively. Significant limitations of the study were the inability to check the accuracy of the cause of death, or CFS diagnosis of the individuals.[79] A larger 14 year follow up study of persons with CFS reported that all-cause mortality or suicide rates of individuals were not significantly different from standardized mortality rates (SMRs).[80]

Epidemiology

Due to the multiple definitions of CFS, estimates of its prevalence vary widely. Studies in the United States have previously found between 4 and 2500 cases of CFS for every 100,000 adults.[81] The CDC states that more than 1 million Americans have CFS and approximately 80% of the cases are undiagnosed.[11] All ethnic and racial groups appear susceptible to the illness, and lower income groups are slightly more likely to develop CFS.[10] A 2009 meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a significantly higher risk of CFS.[82] More women than men get CFS — between 60 and 85% of cases are women; however, there is some indication that the prevalence among men is underreported. The illness is reported to occur more frequently in people between the ages of 40 and 59.[9] CFS is less prevalent among children and adolescents than adults.[11] Blood relatives of people who have CFS appear to be more predisposed.[10][83] There is no direct evidence that CFS is contagious, though it is seen in members of the same family; this is believed to be a familial or genetic link but more research is required for a definite answer.[84]

Risk factors

A recent systematic review included 11 primary studies that had assessed various demographic, medical, psychological, social and environmental factors to predict the development of CFS/ME, and found many had reported significant associations to CFS.[35] The reviewers concluded that the lack of generalizability and replication between studies meant that "none of the identified factors appear suitable for the timely identification of patients at risk of developing CFS/ME within clinical practice."

Associated diseases

Some diseases show a considerable overlap with CFS. Thyroid disorders, anemia, and diabetes are a few of the diseases that must be ruled out if the patient presents with appropriate symptoms.[13][15][85]

People with fibromyalgia (FM, or fibromyalgia syndrome, FMS) have muscle pain and sleep disturbances. Fatigue and muscle pain occurs frequently in the initial phase of various hereditary muscle disorders and in several autoimmune, endocrine and metabolic syndromes; and are frequently labelled as CFS or fibromyalgia in the absence of obvious biochemical/metabolic abnormalities and neurological symptoms.[citation needed] Multiple chemical sensitivity, Gulf War syndrome and post-polio syndrome have symptoms similar to those of CFS,[86][87] and the latter is also theorized to have a common pathophysiology.[87]

Although post-Lyme syndrome and CFS share many features/symptoms, a study found that patients of the former experience more cognitive impairment and the patients of the latter experience more flu-like symptoms.[88]

A 2006 review found that there was a lack of literature to establish the discriminant validity of undifferentiated somatoform disorder from CFS. The author stated that there is a need for proponents of chronic fatigue syndrome to distinguish it from undifferentiated somatoform disorder. The author also mentioned that the experience of fatigue as exclusively physical and not mental is captured by the definition of somatoform disorder but not CFS.[89] Hysterical diagnoses are not merely diagnoses of exclusion but require criteria to be met on the positive grounds of both primary and secondary gain.[90] Primary depression can be excluded in the differential diagnosis due to the absence of anhedonia and la belle indifference, the variability (lability) of mood, and the presence of sensory phenomena and somatic signs such as ataxia, myoclonus and most importantly, exercise intolerance with paresis, malaise and general deterioration.[citation needed] Feeling depressed is also a commonplace reaction to the losses caused by chronic illness[91] which can in some cases become a comorbid situational depression.

Co-morbidity

Many CFS patients will also have, or appear to have, other medical problems or related diagnoses. Co-morbid fibromyalgia is common, where only patients with fibromyalgia show abnormal pain responses.[92] Fibromyalgia occurs in a large percentage of CFS patients between onset and the second year, and some researchers suggest fibromyalgia and CFS are related.[93] As previously mentioned, many CFS sufferers also experience symptoms of irritable bowel syndrome, temporomandibular joint pain, headache including migraines, and other forms of myalgia. CFS patients have significantly higher rates of current mood disorders than the general population.[94] Compared with the non-fatigued population, male CFS patients are more likely to experience chronic pelvic pain syndrome (CP/CPPS), and female CFS patients are also more likely to experience chronic pelvic pain.[95] CFS is significantly more common in women with endometriosis compared with women in the general USA population.[96]

History

In 1934 an outbreak then referred to as atypical poliomyelitis (at the time it was considered a form of polio) occurred at the Los Angeles County Hospital. It strongly resembled what is now called chronic fatigue syndrome and affected a large number of nurses and doctors.[97] In 1955 at the Royal Free Hospital in London, United Kingdom, another outbreak occurred that also affected mostly the hospital staff. Also resembling CFS, it was called both Royal Free disease and benign myalgic encephalomyelitis and formed the basis of descriptions by Acheson, Ramsay, and others.[98] In 1969 benign myalgic encephalomyelitis was first classified into the International Classification of Diseases under Diseases of the nervous system.[99]

The name chronic fatigue syndrome was proposed in the 1988 article, "Chronic fatigue syndrome: a working case definition", (the Holmes definition), to replace chronic Epstein-Barr virus syndrome. This research case definition was published after US Centers for Disease Control and Prevention epidemiologists examined patients at the Lake Tahoe outbreak.[14][100][101] In 2006 the CDC commenced a national program to educate the American public and health care professionals about CFS.[102]

Society and culture

Economic impact

Reynolds et al (2004), estimated that the illness caused about $20,000 per person with CFS in lost productivity which totals to $9.1 billion per year in the United States.[19][103]

Social issues

A study found that CFS patients report a heavy psychosocial burden.[104] A survey by the Tymes Trust reported that children with CFS often state that they struggle for recognition of their needs and/or they feel bullied by medical and educational professionals.[105] The ambiguity of the status of CFS as a medical condition may cause higher perceived stigma.[106]

Support groups

A study found that CFS patients in support groups reported no change in negative interactions compared to an improvement in negative interactions reported by those treated with Cognitive Behavioural Therapy.[107] Patients with greater amounts of negative interactions received worse social support on average than disease-free cancer patients or healthy controls which, in turn, led to greater fatigue severity and functional impairment than CBT-treated patients.[107]

Doctor-patient relations

Some in the medical community did not at first recognize CFS as a real condition, nor was there agreement on its prevalence.[108][109] There has been much disagreement over proposed causes, diagnosis, and treatment of the illness.[110][111][112][113][114] The context of contested causation may affect the lives of the individuals diagnosed with CFS, affecting the patient-doctor relationship, the doctor's confidence in their ability to diagnose and treat, ability to share issues and control in diagnosis with the patient, and raise problematic issues of reparation, compensation, and blame.[115] A major divide exists over whether funding for research and treatment should focus on physiological, psychological or psychosocial aspects of CFS. This division is especially great between patient groups and psychological and psychosocial treatment advocates in Great Britain.[114] Sufferers describe the struggle for healthcare and legitimacy due to bureaucratic denial of the condition because of its lack of a known etiology. Disagreements over how the condition is dealt with by health care systems has resulted in an expensive and prolonged conflict for all involved.[109][116]

Controversy

References

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