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Testing

Ventrification

Ventrification

Ventrification is air purification of vent gases or odors.

It is most often related to odor removal from housing, plumbing, and septic tank air vents.

Odor elimination of vent stack gases by multi-stage zeocarbon filtration is one method of ventrification. Kirby


Medical condition
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Chronic fatigue syndrome (CFS) is one of several names given to a poorly understood, variably debilitating disorder of uncertain cause/causes. Based on a 1999 study of adults in the United States, CFS is thought to affect approximately 4 per 1,000 adults. For unknown reasons, CFS occurs more often in women, and adults in their 40s and 50s. The illness is estimated to be less prevalent in children and adolescents, but study results vary as to the degree.

CFS often manifests with widespread myalgia and arthralgia, cognitive difficulties, chronic mental and physical exhaustion, often severe, and other characteristic symptoms in a previously healthy and active person. Despite promising avenues of research, there remains no assay or pathological finding which is widely accepted to be diagnostic of CFS. It remains a diagnosis of exclusion based largely on patient history and symptomatic criteria, although a number of tests can aid diagnosis. Whereas there is agreement on the genuine threat to health, happiness, and productivity posed by CFS, various physicians' groups, researchers, and patient activists champion very different nomenclature, diagnostic criteria, etiologic hypotheses, and treatments, resulting in controversy about nearly all aspects of the disorder. Even the term chronic fatigue syndrome is controversial because a large part of the patient community believes the name trivializes the illness.

Chronic fatigue syndrome is not the same as "chronic fatigue". Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison. Definitions (other than the 1991 UK Oxford criteria) require a number of features, the most common being severe mental and physical exhaustion which is "unrelieved by rest" (1994 Fukuda definition), and may be worsened by even trivial exertion (a mandatory diagnostic criterion according to some systems). Most diagnostic criteria require that symptoms must be present for at least six months, and all state the symptoms must not be caused by other medical conditions. CFS patients may report many symptoms which are not included in all diagnostic criteria, including muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems. It is unclear if these symptoms represent co-morbid conditions or are produced by an underlying etiology of CFS. Some cases improve over time, and treatments (though none are universally accepted) bring a degree of improvement to many others, though full resolution may be only 5-10% according to the United States Centers for Disease Control and Prevention (CDC).

Nomenclature

Main article: ME/CFS nomenclatures

The naming of this condition has been challenging, since consensus is lacking within the clinical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder, nor even if it is a single homogenous disorder (with a range of possible clinical presentations), or several distinct disorders having many clinical characteristics in common.

Over time and in different countries many names have been associated with the condition(s). Some of the more common names in use include:

Signs and symptoms

Onset

Sudden onset cases

The majority of CFS cases start suddenly, usually accompanied by a "flu-like illness" which is more likely to occur in winter, while a significant proportion of cases begin within several months of severe adverse stress. Many people report getting a case of a flu-like or other respiratory infection such as bronchitis, from which they seem never to fully recover and which evolves into CFS. The diagnosis of Post Viral Fatigue Syndrome is sometimes given in the early stage of the illness. One study reported CFS occurred in some patients following a vaccination or a blood transfusion. The accurate prevalence and exact roles of infection and stress in the development of CFS however are currently unknown.

Gradual onset cases

Other cases have a gradual onset, sometimes spread over years. Patients with Lyme disease may, despite a standard course of treatment, "evolve" clinically from the symptoms of acute Lyme to those similar to CFS. This has become an area of great controversy.

Course

It can be inferred from the 2003 Canadian clinical working definition of ME/CFS that there are 8 categories of symptoms:

  • Fatigue: Unexplained, persistent, or recurrent physical and mental fatigue/exhaustion that substantially reduces activity levels and is not relieved (or not completely relieved) by rest.
  • Post-exertional malaise: An inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms to worsen with a pathologically slow recovery period of usually 24 hours or longer. According to the authors of the Canadian clinical working definition of ME/CFS, the malaise that follows exertion is often reported to be similar to the generalized pain, discomfort and fatigue associated with the acute phase of influenza. Although common in CFS, this may not be the most severe symptom in the individual case, where other symptoms (such as headaches, neurocognitive difficulties, pain and sleep disturbances) can dominate.
  • Sleep dysfunction: "Unrefreshing" sleep/rest, poor sleep quantity, insomnia or rhythm disturbances. A study found that most CFS patients have clinically significant sleep abnormalities that are potentially treatable. Several studies suggest that while CFS patients may experience altered sleep architecture (such as reduced sleep efficiency, a reduction of deep sleep, prolonged sleep initiation, and alpha-wave intrusion during deep sleep) and mildly disordered breathing, overall sleep dysfunction does not seem to be a critical or causative factor in CFS. Sleep may present with vivid disturbing dreams, and exhaustion can worsen sleep dysfunction.
  • Neurological/cognitive manifestations: Common occurrences include confusion, forgetfulness, mental fatigue/brain fog, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances (e.g. spatial instability and disorientation and inability to focus vision), ataxia (unsteady and clumsy motion of the limbs or torso), muscle weakness and "twitches". There may also be cognitive or sensory overload (e.g. photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety). A review of research relating to the neuropsychological functioning in CFS was published in 2001 and found that slowed processing speed, impaired working memory and poor learning of information are the most prominent features of cognitive dysfunctioning in patients with CFS, which couldn't be accounted solely by the severity of the depression and anxiety.
  • Neuroendocrine manifestations: Common occurrences include poor temperature control or loss of thermostatic stability, subnormal body temperature and marked daily fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities, intolerance of extremes of heat and cold, digestive disturbances and/or marked weight change - anorexia or abnormal appetite, loss of adaptability and worsening of symptoms with stress.
  • Immune manifestations: Common occurrences include tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food and/or medications and/or chemicals (which may complicate treatment). At least one study has confirmed that most CFS patients reduce or cease alcohol intake, mostly due to personal experience of worsening symptoms (although the cause of this is unknown and may not be strictly "immunological" as implied by the symptom list).

Activity levels

Patients report critical reductions in levels of physical activity and are as impaired as persons whose fatigue can be explained by another medical or a psychiatric condition. According to the CDC, studies show that the disability in CFS patients is comparable to some well-known, very severe medical conditions, such as; multiple sclerosis, AIDS, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions. The severity of symptoms and disability is the same in both genders, and chronic pain is strongly disabling in CFS patients, but despite a common diagnosis the functional capacity of CFS patients varies greatly. While some patients are able to lead a relatively normal life, others are totally bed-bound and unable to care for themselves. A systematic review found that in a synthesis of studies, 42% of patients were employed, 54% were unemployed, 64% reported CFS-related work limitations, 55% were on disability benefits or temporary sick leave, and 19% worked full-time.

SNIP!









Diagnosis

It has been suggested that this section be split out into another page. (Discuss)

At this time, there is no accepted conclusive test or series of tests of chronic fatigue syndrome. CFS is therefore largely an exclusionary diagnosis. If a doctor suspects a patient may have CFS they should begin the diagnostic process by eliminating other potential causes of the patient's symptoms, as "chronic fatigue" and related symptoms can be caused by a wide variety of conditions which should be investigated and managed.

CDC 1994 criteria

The criteria most used in scientific research are those of the Centers for Disease Control and Prevention of 1994 by Fukuda e.a. The following conditions must be met.

Primary symptom

Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is:

  • of new or definite onset (has not been lifelong);
  • is not the result of ongoing exertion;
  • is not substantially alleviated by rest;
  • and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
Additional requirement

The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:

  1. self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;
  2. sore throat;
  3. tender cervical or axillary lymph nodes;
  4. muscle pain;
  5. multi-joint pain without joint swelling or redness;
  6. headaches of a new type, pattern, or severity;
  7. unrefreshing sleep;
  8. post-exertional malaise lasting more than 24 hours.
Final requirement

All other known causes of chronic fatigue must have been ruled out, specifically clinical depression, side effects of medication, eating disorders and substance abuse.

The clinical evaluation should include:

  1. A thorough history that covers medical and psychosocial circumstances at the onset of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other substance abuse; and current use of prescription and over-the-counter medications and food supplements.
  2. A mental status examination to identify abnormalities in mood, intellectual function, memory, and personality. Particular attention should be directed toward current symptoms of depression or anxiety, self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurologic disorder requires that an appropriate psychiatric, psychological, or neurologic evaluation be done.
  3. A thorough physical examination.
  4. A minimum battery of laboratory screening tests including complete blood count with leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes, and creatinine; determination of thyroid-stimulating hormone; and urinalysis.

According to Fukuda e.a., other tests have no known value, unless indicated on an individual basis to confirm or exclude a differential diagnosis, such as multiple sclerosis.

NICE (UK) 2007 criteria

The UK National Institute for Health and Clinical Excellence (NICE), published a multidisciplinary clinical practice guideline in 2007 in which the following criteria are employed:

  • fatigue that is new, persistent and/or recurrent, not explained by other conditions and has resulted in a substantial reduction in activity level characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) and
  • one or more of the following list of symptoms: difficulty with sleeping, muscle and/or joint pain at multiple sites without evidence of inflammation, headaches, painful lymph nodes that are not pathologically enlarged, sore throat, cognitive dysfunction, worsening of symptoms by physical or mental exertion, general malaise, dizziness and/or nausea and palpitations with no identifiable heart problem.

The diagnosis should be reconsidered if none of the following symptoms remain: post-exertional fatigue or malaise, cognitive difficulties, sleep disturbance, chronic pain.

The guideline requires fatigue to have been present for 4 months in an adult or 3 months in a child. It expects a diagnosis in a child to be made by a pediatrician. There are no recommendations on who is to make the diagnosis in an adult. The guideline states that a referral to a ME/CFS specialist should be offered immediately to the severely ill.

The NICE criteria have been criticized by patients' associations for being far too relaxed, recommending controversial CBT/GET and ignoring the WHO classification of CFS/ME as a neurological condition.

Other systems

Other scoring systems have also been proposed to quantify CFS symptoms for research purposes. These include:

  • Holmes et al (1988) scoring system. Also sometimes called "CDC 1988," to distinguish from the newer CDC system.
  • Oxford criteria (1991)
  • Carruthers et al (2003) Canadian Case definition for ME/CFS
  • Australian Guidelines (2004)

Issues with the definitions/criteria

Selection bias and inconsistencies

Several studies have found that using different case definitions ( eg broad vs conservative ) has major influence on the types of patients selected and have also supported the distinction between specific subgroups of CFS to be identified and/or for the case definition to be further clarified with emphasis on using empirical studies: An international CFS study group for the CDC found ambiguities in the CDC 1994 CFS research case definition which contribute to inconsistent case identification. Researchers have found that a difference in the self-reported cause of a patient's CFS is associated with significant differences in clinical measures and outcomes, and concluded it is likely that their response to treatment may vary and the CFS definition should be improved to define more homogeneous groups of patients for the purposes of research and treatment. It also may be inappropriate to synthesize results from CFS studies that use different definitions to select study populations. It has been found that identification of new diagnostic symptoms, the use of severity ratings for symptomatology, and the identification of standardized measures that differentiate cases of CFS from other conditions; all hold promise for improving the sensitivity, specificity, and reliability of the diagnostic criteria for CFS.

Improving accuracy

A study found that the best predictors for people accurately fitting the CDC 1994 definition of CFS were the presence of postexertional malaise, unrefreshing sleep, and impaired memory-concentration, and this accuracy increased when severity of these symptoms were taken into account. Another examination of the CDC's working case definition(s) of CFS found that the differential accuracy is strengthened when eliminating three symptoms (muscle weakness, joint pain, sleep disturbance) and adding two others (anorexia, nausea). It has also been found that the Canadian 2003 definition (a less used but stricter criteria) selects cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.

Possible subtypes

Studies suggest the existence of CFS subtypes. After examining the 'minor' diagnostic symptoms of CFS in women meeting the CDC 1994 criteria, researchers found that 3 subtypes could be identified; musculoskeletal, infectious and neurological; with associated impairment characteristic of each subtype. "Extreme scores" characterized about 2/3 of the sample, with higher disability in those with the highest scores. Depression and anxiety were not more prevalent in any particular subtype, and did not increase with the severity of specific symptom reports.

Diagnosis inaccuracies

A review published in 2006 found that the accurate diagnosis of CFS is low and another study found that physicians have a tendency to underrecognize psychiatric illness, especially when assessing patients whose chronic fatigue is fully explainable by a psychiatric disorder and who may be misdiagnosed with CFS.

Terminology implications

Because of the similarity in terminology, CFS is often confused with "chronic fatigue". Fatigue in the perceived absence of disease has traditionally been seen within the purview of psychiatry. A study found that while most medical trainees consider the symptom complex of CFS to be a serious illness resulting in poor quality of life, the "chronic fatigue syndrome" name may be regarded less seriously than the "myalgic encephalopathy" name. Another study found that nurses and physician assistants viewed a patient's CFS symptoms as more severe and disabling if they were told the patient had a more medical sounding diagnosis of "chronic neuroendocrineimmune dysfunction syndrome".

Testing

There is no generally accepted diagnostic test to reliably diagnose or exclude chronic fatigue syndrome. Research has not identified an association between CFS and one particular virus.

According to the CDC, the main purpose of performing diagnostic tests of any sort is to rule out other causes for fatigue and other symptoms of CFS. Routine tests recommended by the CDC:

The 2007 UK NICE guideline includes, in addition to the CDC panel: C-reactive protein (a marker of inflammation), creatine kinase (a muscle-related enzyme), plasma viscosity (optional if ESR done) and serology for celiac disease. Ferritin determination may be performed in children and young people, and in adults only if other tests suggest iron deficiency. The guideline recommends clinical judgement in decisions to perform other tests in addition to the standard set. Testing for infections (e.g. Lyme disease, viral hepatitis, HIV, mononucleosis, toxoplasmosis or cytomegalovirus) is only recommended if the patient gives a specific history for this. Routine performance of the head-up tilt test, auditory brainstem responses and electrodermal conductivity is discouraged.

In contrast, the Nightingale Research Foundation recommends extensive testing including brain imaging and tests for neuropsychological, sleep, muscle, vascular and cardiac dysfunction to diagnose ME/CFS.

Suhadolnik, DeMeirleir e.a. developed a test to measure the fragmentation of the enzyme RNAse L. This fragmentation was found to be significant in CFS and has some use as a marker, but the test has limited availability.

Diagnostic controversies

Historically, many doctors have been unfamiliar with CFS, and some have refused to diagnose it. Others minimised the seriousness of CFS. This situation is changing somewhat, with more doctors willing to diagnose it. In the UK, the 2002 Chief Medical Officer's report stated that all doctors should consider CFS as a serious chronic illness — and treat patients accordingly. Similar progress has been made in the United States.

There remains considerable skepticism amongst some medical professionals about the existence of CFS as a "real" — i.e. medical as opposed to behavioral — condition, possibly due to the extreme uncertainty of its etiology, and the lack of testing for biomedical signs and its largely exclusionary definition. Many people are inclined to believe that a condition with few or no specific biomedical markers may be psychological in origin. This had led to a frustration in many patients, who feel that their disability is not psychological, but biological, and point to the epidemic history and biomedical research trends. Alternatively, some doctors and patients believe that the illnesses are real, but conceptualising them under a CFS banner amounts to misdiagnosis, largely due to the near-absolute exclusion of physical and laboratory signs required by the popular CFS criteria and the excuse to give up looking for treatable abnormalities.

Some patients' groups and experts state that research into CFS (ME) in the UK has been mostly hijacked by a "lobby of psychologists and psychiatrists", who they claim hold significant power within the medical fraternity, with a resultant "gross abuse/neglect of patients." The UK and the Netherlands have particularly seen disagreements between biomedical researchers and their adherents, and psychiatrists (particularly proponents of cognitive behavioral therapy, or CBT) and supporters of the theory that CFS is psychological in origin, and can be "cured" or "rehabilitated" by psychotherapy and exercise.

Further controversy persists regarding the redefinition of ME as CFS in 1988 and whether they are in fact essentially different, if perhaps overlapping, entities. This dispute is reflected in debate over nomenclature or definition writ small, with stakes being high for all parties as this informs choice of treatment, research, management and funding policy. Psychiatrists refute the suggestion of the Gibson Report that excessive funding has been given to psychiatric research, despite that extremely few Medical Research Council studies have been into the pathoetiology of the illness. In his submission to the NICE guidelines panel, UK CFS specialist psychologist Peter Denton White disputed needs for disability aids for the severely affected and rejected the possibility of neuropathic pain and other features found in ME. Following a recent BBC radio show Dr White is reported to have contradicted his own broadcast stance by allegedly clarifying to co-guest, Dr William Weir, that ME "is an abnormal illness belief”. Dr White claims to have misinterpreted the question as one of abnormal illness beliefs in general.

Proponents of "lumping" insist there is insufficient evidence as to the existence of a discrete ME, and that they are equivalent. Detractors respond that if they were equivalent, there would be no resistance to referencing the term ME, that the popular CFS definition bears little or no resemblance to ME, and that ever-increasingly vague, misleading criteria and heterogeneity benefit no-one. ME activists insist that medical education of the historical database of published ME findings is suppressed in favour of biased appeals to the psychiatric paradigm such as the criticised 1996 Royal Colleges Report, reviews which cherry-pick study inclusions and a publishing "preference" of some journals such as the BMJ for psychosocial papers revolving around unsupportable psychosomatic explanations such as "interoception". The assertion of equivalency relies on disputing any definitive ME signs and findings, despite advances such as the 2003 Consensus definition which even use compound terminology.

All three ME specialists present at the CDC's naming board refused to endorse the descriptor of CFS and Dr Holmes was unknown for any work in this field previously; since then co-author Professor Komaroff has admitted the CFS definition was "a mistake". Dr Reeves of the CDC has stated that the epidemics described historically as ME were "not CFS". Recently the IACFS has voted to change its name to the IACFSME with a view to phasing out CFS, although they have made no associated changes to definition. Reasons cited for keeping CFS are American insurance claims and easy recognition of recent research carried out under the CFS umbrella.

The UK Department of Health has in parliament recognised the WHO classifaction and ME is recognised in a 1988 Bill of Rights, despite the establishment largely insisting on ME-CFS equivalency. It is debatable whether the NHS recognises ME at all and frequently documentation on CFS refers to "chronic fatigue", insisting that there are no signs or testable abnormalities.

Recently the CDC has made its position clear, stating on 26th December 2007 that:

"Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. ... The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS"

Treatment

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It has been suggested that this section be split out into another page. (Discuss)

Many patients do not fully recover from CFS, even with treatment. Some management strategies are suggested to reduce the consequences of having CFS. A sytematic review has shown that CFS patients are less susceptible to placebo effects than predicted, and have a low placebo response compared to patients with other diseases.

Behavioral interventions

Behavioral interventions including cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have been shown to be at least partially effective in some people with CFS. A systematic review published in the Journal of the Royal Society of Medicine (October 2006) found these are the only two known treatments that seem helpful. The statement of principal findings regarding CBT/GET was: "A number of RCTs (randomised controlled trials) suggest that behavioural interventions, including elements of CBT, GET and rehabilitation, may reduce symptoms and improve physical functioning of people with CFS/ME." However some uncertainty still exists over the efficacy of these treatments, especially GET for severely affected patients, as none were included in studies that passed the inclusion criteria of the review. The review also emphasized the need for more and better conducted studies of both therapies, as well as more research into the adverse affects of treatments in general as they may be under reported or poorly quantified. As mentioned in the review under the 'unanswered questions/further research' section, very few studies assessed the effectiveness of "interventions for children and young people and for severely affected patients." More research is needed on severely affected patients in general; because many treatments and studies require patients to attend a clinic, and those with the worst symptoms often receive the least support from health and social services. The authors also expressed concern about possible bias in the CFS literature, a lack of uniformity in case definitions and study inclusion/exclusion criteria (studies using any CFS criteria were included), and the basic information provided about the participants; which they state makes it difficult to assess the generalizability of the findings of many of these studies. This review found that no intervention had been proved effective in restoring the ability to work. An earlier systematic review published in 2002 also found this, although CBT was "lending a possible association between improvement in the ability to work and an increase in the number of patients employed". This earlier review also found that no specific patient characteristics seemed to serve as best predictors of positive employment outcomes in CFS patients, although did find that depression of greater severity was associated with unemployment. However, another systematic review published in 2004 concluded "Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work."

The "Gibson Report" (Report of the Group on Scientific Research into Myalgic Encephalomyelitis 2006), a political inquiry into the science of CFS provides information about treating CFS with CBT and/or GET. However, the report has been criticised by the ME Association, for: being poorly conducted, misrepresentations, omissions, lack of references, factual inaccuracies or bias, and even potentially damaging implications. The "25% ME Group", a UK advocacy support group for severely affected M.E. sufferers, state, in their submission to the Gibson report, that both CBT and GET are unhelpful and may be dangerous/harmful to severely affected CFS patients. The discrepancy between trial results and patient group surveys has been noted by the P.A.C.E. trial group, who are conducting a larger more detailed study into CBT and GET which is currently underway and is due for completion in 2009. However, it has without explanation dropped all use of objective measures such as actometers since the original research plan was published.

Cognitive Behavioral Therapy (CBT)

Results from clinical studies have suggested that cognitive behavioral therapy (CBT) is an effective, evidence-based therapy for CFS. The use of psychological therapies such as CBT does not imply that CFS is a psychiatric condition or that physical symptoms are not real, although the suggestion that they may be curative does suggest "proof of concept". Some CFS patients have comorbid depression and/or anxiety. In addition, it is argued that CBT may teach patients various "coping strategies" to help them deal with cognitive impairments such as a deterioration of short-term memory or abbreviated attention span, although it is uncertain how changing one's schemas, as CBT theory contends, would cause improvement in these serious pathological symptoms. Dr. David Smith, a former medical advisor to the ME Association in the UK who reports to have successfully treated many children using antidepressants and therapy, offers a possible explanation on his website. Some patients and patient groups state that this is innaccurate, arguing that CBT is described as an "exposure therapy" e.g. UK mental health charity MIND, that most of the conditions commonly listed as being suitable for CBT are behavioural and that the 2002 UK CMO's Report describes CBT as "a tool for constructively modifying attitude and behaviour."

Although the Gibson Report states that CBT in general is helpful to many people with other illnesses, it is notable that RCTs of CBT in cancer have found no improvements in the course of the disease at all, and most of the helpfulness that CBT may afford illness in general is concerning matters such as e.g. high risk behaviour in a minority of AIDS patients. Dr Eleanor Stein states that the most commonly used worldwide model of illness management, the Stanford Model of Chronic Disease Self Management, shows benefits for diabetes and hypertension (conditions in which lifestyle play a strong role), but less benefit for arthritis.

Carruthers and Van de Sande in their Overview of the Canadian Consensus Guidelines, note that supportive counselling should not be mis-termed CBT to avoid misleading confusion between the two treatments amongst patients and doctors.

While it is controversial in regards to CFS, CBT seems to be more effective in those with less severe forms but much less effective in the severely affected. Commenting on the relevance of CBT for CFS, the report states that it has a role to play in treatment but at best is only a partial answer and more research is needed. A systematic review on CBT finds that "CBT was associated with a significant positive effect on fatigue, symptoms, physical functioning and school attendance." The reviewers state that the quality of many recent trails on CBT are lower quality randomized controlled trials or trials that did not involve random allocation. The reviewers also state that one recent, good quality trial of CBT in children and adolescence supports the effectiveness of CBT. The reviewers state that reasons for withdrawals typically remain unreported, and that a degree of publication bias seems to be present in CFS/ME literature as a whole. In one study, the effect of CBT has been demonstrated up to five years after therapy. A large evaluation study in Belgium, however, lead to the conclusion that while on average CBT may cause patients to feel somewhat better, objective measurement shows no reduction in their disability. Another recent study found that CBT improved self-reported cognitive impairment but not actual neuropsychological test performance which suggests the patients were somehow being mislead. According to researchers of one study, CBT usually aims at reducing fatigue but can also reduce pain, although higher pain at baseline was associated with a negative treatment outcome. The place of CBT for children, young people and the severely affected needs to be better established, although some open studies suggest that it is helpful, so long as it is adapted for the individual patient.

Similar and related treatments

Many CFS patients face the stress of economic and legal problems. CFS sufferers may lose jobs, marriages, and the ability to work at all, causing severe financial loss and distress. A lawyer, social worker, or counsellor can be beneficial in helping the patient determine their best course, and may assist the patient with applying for work-related disability, social programs, and other aid. A study which included 45 CFS patients found that psychodynamic counselling has comparable effectiveness to cognitive behavioral therapy (CBT) in the treatment of chronic fatigue.

Graded Exercise Therapy (GE, GA, GET or Adaptive Pacing)

Several rehabilitation programs have been proposed which involve supervised or self-monitored graded exercise or activity. Such programs are designed to overcome deconditioning, increase strength and cardiovascular health , despite that there is no evidence that deconditioning is a significant factor in activity limitation, or that patients do not make the most of their restricted ability. Programs are said to incorporate considerable education wherein the sufferer learns to start at an appropriate level of activity (based upon intensity and duration) which is incrementally increased, at a rate which is supposed does not substantially increase symptoms.

The Gibson Report states GET is one of the most common treatments for CFS in the UK. Dr. Peter White found that in four studies 50-70% of patients improved with GET, and he stated that GET (combined with CBT) has only been shown to be efficacious in small trials. The Gibson Report mentions the 25% ME Group statement that, "only 5% of their members found GET helpful and 95% found it unhelpful". Many patients who submitted personal evidence to the Gibson inquiry said that they had similarly negative experiences which they attributed to their participation in GET. The authors of the report expressed concern about GET treatment guidelines, arguing that there are potential risks of GET for CFS patients, "Some of our evidence suggests that GET carries some risk and patients should be advised of this." The authors stated that the CFS guidlines lacked cautions about these possible risks and they said that patients should be checked for heart trouble before attempting GET. The authors said that the perception that GET may lead to deterioration in health "has lent fuel to their often serious antipathy to the doctors offering it." A New Zealand study suggests that GET may result in self-reported improvement by reducing the degree to which patients focus on their symptoms although there is no evidence that CFS patients disproportionately focus on symptoms, rather that common CFS definitions fail to describe patients' symptomology adequately.

Medication

It has been suggested that this section be split out into another page. (Discuss)

Antidepressants

Antidepressants are often prescribed to CFS patients. Their purpose can be to treat secondary depression or mood swings, but low dosage tricyclic antidepressants are sometimes prescribed to improve sleep quality and reduce pain.. However, antidepressants often have side effects, some of which can increase CFS symptoms, and baseline metabolism differs between patients. Finding antidepressants, if any, that help the individual patient, is therefore a matter of trial and error.

Overall, studies into the use of antidepressants in CFS have had mixed results. Some studies have shown a reduction in symptoms with antidepressant use, while others have shown no benefit.

Experimental RNA Injections

Nucleic acid (double-stranded RNA) compounds represent a potential new class of pharmaceutical products that are designed to act at the molecular level for treatment of CFS. An NDA (New Drug Application) has been submitted to the US FDA (Food and Drug Administration) by Hemispherx Biopharma, for Ampligen®. Over 40,000 doses of Ampligen® have been administered in FDA approved clinical trials.

Autonomic nervous system stimulants

Drugs such as atomoxetine (Strattera®), which stimulate the autonomic nervous system, appear to have positive effects in some people with CFS symptoms. Amphetamines and amphetamine analogs may help some patients. For example, methylphenidate (Ritalin®) has been found to be significantly better than placebo in relieving fatigue and concentration disturbances in a minority of CFS patients but more research is needed into the long term effects. Modafinil (Provigil®), a medication designed to aid in maintaining wakefulness, has had some positive effect on individuals with CFS, but has not been properly studied. A small study suggested that long-term treatment with modafinil may not be beneficial for CFS patients.

Hormones

Various hormones have been tried from time to time, including specifically steroids (such as cortisol) and thyroid hormones. Though conventional steroidal treatment may produce short-term pain relief, it has not been shown to be of any general benefit. Studies performed by Dr. Jacob Teitelbaum and by Dr. Kent Holtorf incorporating low-dose cortisol therapy have demonstrated positive results, but other studies have shown little benefit from low dose cortisol.

Other medical treatments

Allergy identification and treatment

In cases where CFS-like symptoms may be caused by allergies, enzyme deficiencies or food intolerance, such as chronic sinusitis , coeliac disease, or irritable bowel syndrome, allergy testing, treatments, or elimination diets may prove beneficial.

Complementary and alternative medicine

Essential fatty acid treatments

Behan and Horrobin in a 1990 study of individuals diagnosed with postviral fatigue syndrome stated patients given essential fatty acids reported much greater symptom improvement verses patients given placebo. A fatty acid supplementation study conducted in 1999 using patients diagnosed by the Oxford criteria (Warren et al.) declared there were no significant differences between treatment and placebo groups. A review of CFS treatments by Reid et al. in 2000, concluded the Behan and Warren studies showed mixed results, and classified dietary supplements as "unknown effectiveness".

Magnesium

One small randomised controlled trial compared intramuscular injections with magnesium sulphate to placebo. The study stated greater improvement was found in the treatment group compared to the control group, as measured by the Nottingham health profile. The previously noted review by Reid et al. determined subsequent studies have failed to find a deficiency of magnesium in people with chronic fatigue syndrome, and classified magnesium treatments in dietary supplements having "unknown effectiveness". ".


Complementary and alternative medicine usage

Two studies reported increased utilization of alternative treatments by people with CFS vs. without. In one study designed to assess use of alternative medicines and perceived benefits with 63 paired CFS and non-CFS co-twins, 91% of twins with CFS and 71% without CFS used at last one alternative treatment in their life, and a large proportion of all twins considered them helpful. Future research should ascertain the usefulness of alternative practices in the management of CFS.

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." It is not known whether any patients truly "recover" entirely from the illness, or achieve remission from a relapsing, remitting illness. Few untreated patients report a total "cure".

Deaths

CFS is unlikely to increase the risk of an early death. A systematic review of 14 studies of the outcome of CFS reported 8 deaths, but none were considered directly attributable to CFS. To date there have been two studies directly addressing life expectancy in CFS. In a preliminary 2006 study of CFS self-help group members, it was reported that CFS patients were likely to die at a younger than average age for cancer, heart failure, and suicide. However, a much larger study of 641 CDC criteria diagnosed patients with CFS, who were followed up for a mean of 9 years, showed no excess risk of dying from any cause.

People diagnosed with CFS may die, as in the case in the UK of Sophia Mirza, where the coroner recorded a verdict of "Acute anuric renal failure due to dehydration arising as a result of CFS." According to Sophia's mother, Sophia became intolerant to water and managed only 4 fluid ounces per day. The pathologist said, "ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory...The changes of dorsal root ganglionitis seen in 75% of Sophia's spinal cord were very similar to that seen during active infection by herpes viruses." This was seen as a form of recognition by the ME community. Previous cases have listed CFS as the cause of death in the US and Australia

Epidemiology

Due to problems with the definition of CFS, estimates of its prevalence vary widely. Studies in the United States have previously found between 75 and 420 cases of CFS for every 100,000 adults. The CDC states that more than 1 million Americans have CFS and approximately 80% of the cases are undiagnosed. All ethnic and racial groups appear susceptible to the illness, and lower income groups are slightly more likely to develop CFS. 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 under reported. The illness is reported to occur more frequently in people between the ages of 40 and 59. Blood relatives of people who have CFS appear to be more predisposed. However, CFS does not appear directly contagious; caretakers, partners and others in close contact with persons with CFS for years do not develop CFS any more frequently (excluding relatives, as earlier).

Epidemiological research on children and adolescents has received minimal focus according to a 2006 research review. Among minors, prevalence appears to be lower than for adults and various studies have found a range of 50-80% of the cases occur in girls. The authors hypothesize the differences in estimates of ME/CFS among pediatric studies may result because of the lack of a reliable pediatric case definition.

CFS generally occurs in endemic cases. In addition, over 50 instances have been documented, such as the Royal Free Hospital incident, where epidemic clusters were reported. In these instances, significant numbers of people came down with illnesses described as ME or CFS simultaneously, confined to a local area or even a single building. An infectious origin for these clusters was considered highly likely due to:

  • transference by inoculation to monkeys which developed symptomology and on post-mortem demonstrated neurological, vascular and cardiac damage (Fellow and Miles, 1955).
  • human post-mortems or scans demonstrating abnormalities consistent with chronic infection (Wallis 1957, Schwartz et al 1994)
  • serologic evidence of Iceland Disease blocking spread of polio type I spreading northwards (Sigurdsson et al, 1958).
  • the pattern of acute onset with pharyngitis, mild fever, muscular pain, neck stiff­ness, cervical lymphadenopathy, gastroenteric symptoms, diffuse CNS involvement and photosensitivity were consistent with viral infection with an observed incubation period of 5-7 days. The biphasic clinical picture echoes pathogenesis through the pharynx, spreading through the reticuloendothelial barrier, then the CNS, resulting in morphological changes in mature lymphocytes and antibody creation. (Acheson, Ramsay, RIchardson, Crowley, Dillon et al)
  • A predeliction for residential communities and most outbreaks occurring in summer (Acheson)
  • The isolation of the non-polio enterovirus ECHO-9 in patients (Lyle, Annals of Internal Medicine 1959; 51: 248-269)
  • psychiatric disease was a widely regarded exclusion for M.E. diagnosis (e.g. Acheson) and positive criteria for hysteria were absent (Gosling, Mayne, 1970).
  • At the 1978 RSM Symposium, new evidence was presented of increased anti-complementary activity and the ability of lymphocytes to proliferate and survive in vitro for up to 19 weeks. (Compston 1978).

Since most current definitions of CFS exclude such findings and signs, it is disputed whether they refer to a differential diagnosis (but see below).

According to the CDC, CFS itself is not contagious.

Disease associations

Some diseases show a considerable overlap with CFS. According to an article in American Family Physician in 2002, Multiple Sclerosis, Thyroid disorders, anemia, and diabetes are but a few of the diseases that must be ruled out if the patient presents with appropriate symptoms.

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. Those with multiple chemical sensitivities (MCS) are sensitive to chemicals and have sleep disturbances. Many veterans with Gulf War syndrome (GWS) have symptoms almost identical to CFS. One study found several parallels when relating the symptoms of Post-polio syndrome with CFS, and postulates a possible common pathophysiology for the illnesses.

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.

One review (2006) 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. Hysterical diagnoses are not merely diagnoses of exclusion but require criteria to be met on the positive grounds of both primary and secondary gain. 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, myclonus and most importantly, exercise intolerance with paresis, malaise and general deterioration,Cite error: A <ref> tag is missing the closing </ref> (see the help page). 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, although there are differences in pain complaints. Fibromyalgia will occur in a large percentage of CFS patients between onset and the second year, and some researchers suggest that fibromyalgia and CFS are related. Similarly, multiple chemical sensitivity (MCS) is reported by many CFS patients, and it is speculated that these similar conditions may be related by some underlying mechanism, such as elevated nitric oxide/peroxynitrite. As previously mentioned, many CFS sufferers also experience symptoms of irritable bowel syndrome, temporomandibular joint pain, headache including migraines, and other forms of myalgia. Clinical depression and anxiety are also commonly co-morbid. 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. CFS is significantly more common in women with endometriosis compared with women in the general USA population.

Social issues

Many patients find that a chronic fatigue syndrome diagnosis carries a considerable stigma, and has frequently been viewed as malingering, hypochondriac, phobic, "wanting attention" or "yuppie flu". As there is no objective test for the condition at this time, it has been argued that it is easy to invent or feign CFS-like symptoms for financial, social, or emotional benefits. CFS sufferers argue in turn that the perceived "benefits" are hardly as generous as some may believe, and that CFS patients would greatly prefer to be healthy and independent. A study found that CFS patients endure a heavy psychosocial burden. 2,338 respondents of a survey by a UK patient organization highlights that those with the worst symptoms often receive the least support from health and social services. A study found that CFS patients receive worse social support than disease-free cancer patients or healthy controls, which may perpetuate fatigue severity and functional impairment in CFS. A survey by the Thymes Trust found that children with CFS often state that they struggle for recognition of their needs and/or they feel bullied by medical and educational professionals. The ambiguity of the status of CFS as a medical condition may cause higher perceived stigma. A study suggests that while there are no gender differences in CFS symptoms, men and women have different perceptions of their illness and are treated differently by the medical profession. Anxiety and depression often result from the emotional, social and financial crises caused by CFS. While few studies have been made, it is believed that CFS patients are at a high risk of suicide.

A lack of information and awareness has led to many patients to feel stigmatized. CFS patients may not receive total medical and social acceptance and they state that some people trivialise the illness. When the illness is coupled with unaccommodating family, friends, colleagues, often due to stigma, and social repercussions such as financial needs, housing problems, the struggle to obtain disability benefits or insurance, discrimination and misconception within the care sector, it can put demands on the sufferer exceeding their safe capabilities. Many sufferers say that they need to do things for themselves during the time in which they feel better as there is no-one to delegate these tasks to.

History

Main article: ME/CFS history

Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century.

A major outbreak in 1934 at the Los Angeles County Hospital infected all or most of its nurses and doctors. It was referred to as Atypical Poliomyelitis, and was generally believed to be a form of polio.

The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred at London's Royal Free Hospital in 1955 and formed the basis of descriptions by Achenson, Ramsay, and others.

Although early reports described epidemics, and by the 1950’s several tens had occurred worldwide, it was established that the disorder was primarily found among the general population and the epidemic form was the exception. Reports of cases were fairly stable through the 70’s. But since 1979 there has been an enormous but poorly documented increase in cases of ME/CFS. These increases compounded slowly until 1984 when an exponential increase occurred. The numbers did not drop afterwards as one might expect after an epidemic but have continued to rise in increasing number.

(Benign) Myalgic Encephalomyelitis was first classified into the International Classification of Diseases in 1969 under Diseases of the nervous system.

The name Chronic Fatigue Syndrome has been attributed to the 1988 article, "Chronic fatigue syndrome: a working case definition", (Holmes definition). This research case definition was published after US Centers for Disease Control epidemiologists examined patients at the Lake Tahoe outbreak.

In 2006 the CDC estimated there were more than 1 million cases of CFS in the US and commenced a public awareness program.

Since inception, the condition has been steeped in controversy. Despite continuous research and many findings, indicating also likely subsets of patients, the present state of study on this condition is fragmented and contentious.

Controversy

It has been suggested that this section be split out into another page. (Discuss)

Two contrasting viewpoints among ME/CFS experts have become apparent. In a letter to the Lancet, psychiatrists David and Wessely contested the WHO classification, arguing that CFS was a form of neurasthenia to be classified as a psychiatric condition. Dutch researchers tested a model where behavioral, cognitive, and affective factors played a role in perpetuating fatigue, and concluded that this was the correct model for CFS. This result could, however, not be replicated in a population-based study, where fatigue in psychiatric disorders, but not in CFS, proved to be a match.

In 2001 the WHO's Collaborating Center, King's College, London, published a "Guide to Mental Health in Primary Care", in which both ME and CFS were reclassified as mental illnesses in ICD-10, under the code F48.0. The guide was also on the website of The Collaborating Center; King's College. In response to activist protests to the Collaborating Center and the WHO's Headquarters, the web page was corrected and a correction to the Guide promised. The latter was tardy and when a correction slip was printed around 30,000 copies had already been distributed. On 28th June 2001 Andre L'Hours, Technical Officer at the WHO headquarters in Geneva, confirmed that it was "unacceptable" to classify one disorder in two places in the ICD-10 under the WHO's rubric.

The Countess of Mar brought the matter to the attention of the House of Lords on January 22nd, 2004, citing WHO Headquarters position of how ME and CFS are classified (G93.3), and that WHO intend no changing of this. Subsequently Lord Warner wrotestating The London WHO Collaborating Center had ceded to WHO authority and would ensure future editions of the Guide were corrected. In response to an activist, Professor Anthony Sheehan, Professor of Care Services at the Department on Health, on behalf of Sir Liam Donaldson, then Medical Chief Officer, replied "The WHO; the WHO Collaborating Centre; and the Department of Health have now agreed a position on the classification of CFS/ME. It has been agreed that the second edition of the WHO Guide to Mental Health and neurology in primary care will have only one ICD-10 code for CFS. This is G93.3. I can only say that the Department of Health has no plans to seek a reclassification of CFS within ICD-10."

A common misconception is that ME was initially classified at G93.3 due to political activist pressure; however this is not true. The WHO recognised ME in 1965 at a time it was well established with many supporting papers and inclusion medical textbooks. The WHO classified ME in 1969, some years before the first patient support/activist groups were formed. Again in 1992 the WHO maintained their rubric with no need of patient pressure; the only interference has of late come from psychiatric disgruntlement and the only propaganda a distortion of these facts.

See also

References

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