ME/CFS controversies

Chonic fatigue syndrome is an illness with a long history of controversies. Competing terms to describe the condition(s) have been used over the years in different parts of the world (see ME/CFS nomenclatures). For years, many professionals within the medical community did not recognize ME/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 Chronic Fatigue Syndrome has been decried by many groups as trivializing. Research funding has been contested between organic and psychological causation and millions of dollars have been diverted from CFS research in the United States to other illnesses. 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.

Sufferers describe the struggle for healthcare and legitimacy due to bureaucratic denial of the illness because of lack of 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-tactics, The system results in expensive conflict for all involved.

The name
Competing terms to describe the condition(s) have been used over the years in different parts of the world (see ME/CFS nomenclatures). Many groups say the name Chronic Fatigue Syndrome is unsatisfactory and want it changed because it trivializes the illness. According to studies conducted by Jason, the name Chronic Fatigue Syndrome may be taken less seriously than the name Myalgic Encephalopathy by medical trainees concerning important aspects of the condition.

The cause(s), diagnosis, and treatment
Contrasting viewpoints among ME/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 explained 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 ME/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 scepticism 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 inluenced 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 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 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 etology. 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
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. A 2005 study in the UK. surveyed 811 General Practitioners attitudes and knowledge of CFS/ME. 72% accepted CFS/ME as a recognizable clinical entity, but 48% did not feel confident diagnosing CFS/ME, 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 90% acceptance rate of chronic fatigue syndrome as a clinically valid diagnosis suggests that amongst the Otago general practitioners even then the controversy had receded.

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"