Controversies related to chronic fatigue syndrome
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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 true condition, nor was there agreement on its prevalence. There has been much disagreement over the pathophysiology of chronic fatigue syndrome, how it should be diagnosed, and how to treat it.
The diagnosis is controversial, and its etiology is still not fully understood. Alternative names to describe the condition(s) have been used over time throughout the world, and the name chronic fatigue syndrome is criticized by many patient groups that say the name trivializes the illness, who advocate a more serious-sounding term, such as myalgic encephalomyelitis.
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 CFS patient groups and health care professionals advocating psychological and psychosocial treatments in the United Kingdom.
An article in The New York Times states many patients would prefer a different name than chronic fatigue syndrome, saying that "fatigue" does not adequately describe their condition, and believe the name chronic fatigue syndrome trivializes the illness, preventing it from being seen as a serious health problem, and discouraging research. Their preference is an older British term, myalgic encephalomyelitis, or the term myalgic encephalopathy. 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. In 2004, a paper reported that the majority of the CFS patients questioned in a survey wanted the name changed from chronic fatigue syndrome.
Etiology, diagnosis and treatment
Historically, many professionals within the medical community were unfamiliar with CFS, or did they not recognize it as a real condition, and disagreed on its prevalence or seriousness. In a 1993 New Zealand study, 90% of 83 Otago general practitioners surveyed accepted chronic fatigue syndrome as a clinically valid diagnosis, and 57 stated they had sufficient information to make a diagnosis. 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. The CFS Advisory Committee (Part of the US Department of Health) in 2007 found that a survey of 1,500 US primary care providers showed that 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. A 2008 Norwegian study that explored barriers quality care from experiences by patients suffering from chronic fatigue syndrome concluded, "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."
Education of care providers is a proposed solution. One study conducted a relatively brief seminar presenting factual information on CFS to a cohort of fourth year medical students. The authors concluded the information provided was associated with a more favorable attitude toward CFS. 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. In 2006, the CDC launched a national program to educate the American public and health care professionals about CFS.
There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. Contrasting viewpoints have been expressed by different CFS experts. 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.
Contested causation may have serious negative effects on healthcare for individuals, as it 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.
A survey published in 2013 found that 89% of patient organisations thought the illness to be physical, compared with 58% of newspaper articles and 24% of medical authorities. The authors of the report think that this might explain the gulf between patients and doctors, and why many patients are reluctant to engage in behavioural treatments.
PACE was a large trial investigating the efficacy and safety of four treatments adjunctive to specialist medical care (SMC): cognitive behavioural therapy (CBT), graded exercise therapy (GET), and adaptive pacing therapy (APT). The results were published in February 2011 and concluded that CBT and GET were each "moderately" effective compared to SMC alone, while APT was not found to be effective when added to SMC.
The trial generated a furious response from patient groups and campaigners. Letters to the editor critiqued the definitions of secondary outcomes, questioned post-hoc protocol changes, and expressed concern over generalisability of the results. Professor Malcolm Hooper branded the results "unethical and unscientific" and submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet considered the submissions and rejected them. A Lancet editorial conjectured that the strong negative response might be due to the dismay over the debilitating illness, "but also from an active campaign to discredit the research."
Patient groups and the IACFS/ME have criticized the trial for over-simplified and exaggerated conclusions, for using a flawed psychosocial illness model that ignores biological evidence, for testing a non-representative version of pacing, and because the results seriously conflict with their member surveys which show that pacing is effective and CBT or GET can cause deterioration in many patients who use the treatments.
Support for patients
A 2006 investigation by a group from the Parliament of the United Kingdom found there was not enough support in the UK for CFS patients in terms of access to social security and health care. 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. 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.
Epidemic cases of benign myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970, provoking criticism in letters to the editor of the British Medical Journal by attending physicians, researchers, and nurses who fell ill. The psychiatrists were faulted for not investigating the patients they described, and their conclusions have been refuted. In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity.
In an article in the Journal of Clinical Pathology, Malcolm Hooper argued myalgic encephalomyelitis should be used in place of CFS, and that research in the UK has been hijacked by a "lobby of psychologists and psychiatrists" holding significant power within the medical fraternity, with a resultant "gross abuse/neglect of patients."
In her 1997 book Hystories: Hysterical Epidemics and Modern Culture, literary critic and feminist Elaine Showalter argues that chronic fatigue syndrome is a "hysterical narrative," a modern manifestation of hysteria, a self-perpetuating "cultural symptom of anxiety and stress" historically assigned to women. She says that CFS is a new form of "effort syndrome", a disorder with a long history. Showalter says the media, especially the internet, help to spread the mass hysteria and doctors bow to pressure to accept the new diagnosis because they do not want to be seen as "uncaring." In her book she says that CFS symptoms are genuine, whether psychologically or organically caused, or both, and that the main problem is that people do not believe that psychiatric disorders are "real". She says that while many CFS patients are hostile to psychiatric explanations for their illness, "the majority of doctors and researchers maintain that CFS is a psychological syndrome, and that its symptoms and effects are real". In 2001 she wrote in a new preface to a reprint of her book that CFS patients responded to her ideas with hate mail and death threats.
The 2006 report by the UK Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis stated that, "CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies." The Group called for investigation of what they called, "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here." The Secretary of State for Work and Pensions responded that "Entitlement to Disability Living Allowance depends on the effects that severe physical or mental disability has on a person's need for personal care and/or their ability to walk, and not on particular disabilities or diagnoses. The benefit is available to people with myalgic encephalomyelitis (which can have a physical basis or a psychological basis, or can be due to a combination of factors) on exactly the same terms as other severely disabled people, and they can qualify for it provided that they meet the usual entitlement conditions."
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