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Controversies related to ME/CFS

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Chronic fatigue syndrome (CFS) is an illness with a long history of controversies. For years, many professionals within the medical community did not recognize CFS as a real condition, nor was there agreement on its prevalence. There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness..

The name has also been controversial. Competing terms to describe the condition(s) have been used over the years in different parts of the world (see Alternative names for chronic fatigue syndrome). Chronic fatigue syndrome has been decried by some groups as trivializing the devastating nature of the illness. The etiology is still not known, and a major divide still exists over funding for research and treatment of physiological versus psychological and psychosocial aspects of the illness. The division is especially great between ME patient groups and psychological and psychosocial treatment advocates in Great Britain.

The name

Competing terms to describe the condition(s) have been used over the years in different parts of the world (see Alternative names for chronic fatigue syndrome). Some patient groups say the name chronic fatigue syndrome is unsatisfactory, and they want it changed because they feel it trivializes the illness. According to a survey of medical trainees at a school in the United States, a condition described as chronic fatigue syndrome may be considered less serious than a condition described as myalgic encephalopathy.

The cause(s), diagnosis, and treatment

Contrasting viewpoints among CFS experts have become apparent. In a letter to the Lancet in 1993, psychiatrists David and Wessely contested the WHO classification of CFS under diseases of the nervous system, arguing that it was a form of neurasthenia to be classified as a psychiatric condition. Dutch researchers authored a 1998 study that developed and 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. After an attempted replication of the Dutch model with a 2005 population-based study, United States researchers stated the model adequately represented chronic fatigue secondary to psychiatric conditions, but not CFS. They reported finding important differences between CFS and psychiatrically explained chronic fatigue which could affect the development of therapy and explanatory models.

For years, many professionals within the medical community did not recognize CFS as a real condition, nor was there agreement on its prevalence. There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. It may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process. It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. Contested causation may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of reparation, compensation and blame.

In Norway a study to explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome, concluded that current medical skepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management. CFS patients' reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients' understanding of symptoms and the complex nature of the disease.

This 2008 study examined how medical student attitudes toward CFS, (a more strongly stigmatized illness) was influenced by an interactive seminar focusing on two medically unexplained illnesses, CFS and fibromyalgia. Before the seminar assessment revealed a neutral to slightly favorable attitude toward CFS. At the end of the seminar, significantly more favorable attitudes were found, in general (P < 0.01) and for more CFS research funding (P < 0.001) flexible hours for people with CFS (P < 0.01) and viewing CFS as not primarily a psychological disorder (P < 0.01). It was shown that a relatively brief exposure to factual information on specific medically unexplained illnesses was associated with more favorable attitudes toward CFS among fourth year medical students.

ICD Classification

In 2001, King's College, London, a Collaborating Center of the WHO, published a "Guide to Mental Health in Primary Care" in which ME/CFS was also classified as a mental illness in ICD-10, under the code F48.0. The guide was also published 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 revised and a correction to the guide promised. Andre L'Hours, Technical Officer at the WHO headquarters in Geneva, stated that it was "unacceptable" to classify one disorder in two places in the ICD-10.

The Countess of Mar brought the matter to the attention of the House of Lords on January 22nd, 2004, citing the position of the WHO of how the illness is classified (G93.3), and that WHO intended no change. Subsequently, Lord Warner wrote stating 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."

Research priorities

The etiology is still not known, and a major divide still exists over funding for research and treatment of physiological verses psychological and psychosocial aspects of the illness. The division is especially great between ME patient groups and psychological and psychosocial treatment advocates in Great Britain.

Government action

A 1998 paper by Nicolson asserts, US veterans with CFS/ME/FMS who have been diagnosed with chronic infections, cannot obtain adequate treatment for their condition. He postulates this lack of effective treatment programs for veterans may ultimately be responsible for the transmission of the illness to non-veterans.

Support for patients

Sufferers describe the struggle for healthcare and legitimacy due to what they consider to be bureaucratic denial of the condition because of its lack of a known etiology. Institutions maintain the exclusion of patient support by rhetorical arguments of the open-endedness of science to delay new findings of fact. Patient groups respond to the systematic nature of these exclusions by developing counter-arguments. This has resulted in an expensive and prolonged conflict for all involved.

In 1998 it became known almost 13 million dollars for CFS research had been redirected or improperly accounted for by the United States CDC. The agency stated the need to respond to other public health emergencies. The director of a U.S. national patient advocacy group charged the CDC had a bias against studying the disease.

The insurance industry - and claims departments, in particular - are increasingly having to deal with a rapidly growing phenomenon of "controversial illnesses" which affects not only life business, but also health, worker's compensation and motor third-party liability. When assessing compensation and settling claims, due to a claimed lack of recognition of the conditions by medical associations, insurers often consider that the illness may have been "imaginary" or aggravated.

Diagnostic controversies

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Historically, many doctors were unfamiliar with CFS, and some refused to diagnose it. Others allegedly minimized the seriousness of CFS. The diagnosis has gained wider acceptance. 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 statements have been made in the United States. A 2005 study in the UK surveyed 811 general practitioners' attitudes and knowledge of CFS. 72% accepted CFS as a recognizable clinical entity, but 48% did not feel confident diagnosing it, and 41% did not feel confident in treatment. In November 2007, the CFS Advisory Commitee (Part of the US Department of Health), stated responses from 1,500 US primary care providers showed, 90 percent believed CFS can impair quality of life, 20 percent strongly or somewhat agreed that CFS is only in the patient’s head, and 30 percent said enough information is available to diagnose CFS. In New Zealand in 1993, a survey of general practitioners found a 90% acceptance rate of chronic fatigue syndrome as a clinically valid diagnosis.

There remains considerable skepticism amongst some medical professionals about the existence of CFS as a "real" — i.e. medical as opposed to behavioral — condition. 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.

According to Malcolm Hooper, a researcher who thinks the term "myalgic encephalomyelitis" (ME) should be used in place of CFS, research into ME in the UK has been mostly hijacked by a "lobby of psychologists and psychiatrists" who he claims holds 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 at least partly psychological in origin, pointing to numerous high-quality studies concluding that CFS can be effectively managed by psychotherapy and exercise.

References

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