Controversies related to chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is an illness with a long history of controversy. For years, many professionals within the medical community did not recognize CFS as a true condition, nor was there agreement on its prevalence.^[1][2][3] There has been much disagreement over the pathophysiology of chronic fatigue syndrome, how it should be diagnosed, and how to treat it.^[4]

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. Patient groups have criticized the name "chronic fatigue syndrome," saying it trivializes the illness.

A major divide still exists as to whether funding should be directed towards biomedical or psychological research.

Naming

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.^[5] 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.^[6] In 2004, a paper reported that the majority of the CFS patients questioned in a survey wanted the name changed from chronic fatigue syndrome.^[7]

Cause, diagnosis and treatment

Recognition

Historically, many professionals within the medical community were unfamiliar with CFS, or they did not recognize it as a real condition, and disagreed on its prevalence or seriousness.^[1][2][8] 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.^[9] 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.^[10] 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."^[11]

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.^[12] 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.^[13] In 2006, the CDC launched a national program to educate the American public and health care professionals about CFS.^[14]

Contrasting viewpoints

There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness.^[15][16][17] Contrasting viewpoints have been expressed by different CFS researchers. One influential 1993 Lancet paper argued that CFS was a form of neurasthenia to be classified as a psychiatric condition, and a subsequent 1998 paper concluded that behavioral, cognitive, and affective factors all played a role in perpetuating fatigue.^[18][19] More recently, a 2005 population-based study, which used a similar methodology to the earlier 1998 study, found important differences between CFS and psychiatrically explained chronic fatigue which could affect the development of therapy and explanatory models. They concluded that the 1998 the model adequately represented chronic fatigue secondary to psychiatric conditions, but not CFS.^[20]

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.^[21]

A UK 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. ^[22] It is unclear whether these figures would generalise to other countries, such as the US, where medical authorities place less emphasis on psychosocial approaches to CFS, and more on biomedical approaches.^[23]

PACE trial

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.^[24]

The trial generated considerable adverse criticism. Letters to the editor critiqued the definitions of secondary outcomes, questioned post-hoc protocol changes, and expressed concern over generalisability of the results. Patient groups and the IACFS/ME (an organization of researchers and health care professionals interested in CFS) ^[25] 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.^[26][27][28] One notable researcher submitted a 442-page letter to the Medical Research Council outlining his criticisms of the trial, and a shorter 43-page complaint to the Lancet. The MRC and the Lancet rejected the submissions. A Lancet editorial responded to the adverse criticism by suggesting that some critics could be part of "an active campaign to discredit the research."^[29][30]

More recent criticisms of the trial have come from the scientific community. For example, biostatistician Bruce Levin of Columbia University described the study as "the height of clinical trial amateurism," and Ronald Davis of Stanford University wrote, “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”.^[31] In an analysis of the study's design, the mathematician Professor Rebecca Goldin wrote that "There were problems with the study on almost all levels... the flaws in this design were enough to doom its results from the start."^[32]

Controversy has also arisen from the authors' and the Lancet's recent refusal to share data from the study: "Starting in 2011, patients analyzing the study filed Freedom of Information Act requests to learn what the trial’s results would have been under the original protocol. Those were denied along with many other requests about the trial, some on the grounds that the requests were 'vexatious.' The investigators said they considered the requests to be harassment. . . . Richard Horton, the editor of the Lancet, aggressively defended the trial. In a radio interview, he called the critics 'a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.'"^[33]

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.^[34] 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.^[2][35]

Research funding

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.^[36]

Historical Perceptions

Epidemic cases of benign myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970,^[37] provoking criticism in letters to the editor of the British Medical Journal by attending physicians, researchers, and nurses who fell ill.^{[38][39][40][41][42][43][44][45][46]} The psychiatrists were criticized for not investigating the patients they described,^[47] and their conclusions have been refuted.^[48][49][50] In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity.^[51]

However, the idea that CFS may be culturally mediated persisted in some quarters. 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.^[52]

Political

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."^[53]

Researcher harassment

There has been much criticism of psychosocial approaches, which advocate the use of talking and exercise training as primary treatments for CFS. Many believe that this work draws attention and funding away from research into potentially more effective, biomedical treatments. This debate has been intense. In 2012, several prominent UK researchers adopting the psychosocial perspective reported to the press that they had been verbally abused by patients, and one even claimed to have received death threats.^[54]

References

Further reading

• Hillary Johnson. (1996). Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Crown Publishers, New York. ISBN 0-517-70353-X.