Controversies related to ME/CFS

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A man with a large sign that reads "NIH/CDC Neglect ME/CFS Patients. BILLIONS on DISABILITY, PENNIES on RESEARCH. Research & Clinical Trials Now!"
A man at a healthcare reform protest, advocating for increased funding for ME/CFS research. (See #Research funding diversion at the CDC, below)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a history of controversy. Although it is classified as an organic disease, it was historically assumed to be psychological, and a minority of medical professionals still hold this view.[1][2] The pathophysiology of ME/CFS remains unclear, there exists many competing diagnostic criteria, and some proposed treatments are controversial.[3] There have been substantiated accusations of patient neglect and harm.[1][4]

Naming

A 2007 article in The New York Times reported that patients prefer the terms myalgic encephalomyelitis or myalgic encephalopathy to "chronic fatigue syndrome". They claimed the term fatigue trivializes the illness and discourages research into potential treatments.[5] According to a survey of medical trainees at a school in the United States, a condition described as "chronic fatigue syndrome" is considered less serious than a condition described as "myalgic encephalopathy".[6]

In 2015 the National Academy of Medicine recommended changing the name to Systemic Exertion Intolerance Disease (SEID) in their report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"'.


Neglect and lack of awareness

Due to lack of education and awareness about ME/CFS many clinicians do not recognise it as genuine or underestimate its seriousness.[7][1][8] A 2020 literature review found that “a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.”[8] A 2008 Norwegian study that explored barriers to quality care faced by patients with chronic fatigue syndrome concluded, "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."[9]

Training influences attitudes towards ME/CFS. 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 ME/CFS.[10]

Neglect of patients

A group of 15 people posing in front of a building. One person lays on a cot holding a sign that reads, "I'm Here...23 hrs a day"
Advocates presenting a petition to the Welsh Parliament requesting specialist care for people with ME/CFS and fibromyalgia

Governments, medical institutions, and the medical community have been criticised for neglecting people with ME/CFS.[1][11][12][13] [14]George Monbiot, a journalist for the Guardian, called the neglect and its consequences “the greatest medical scandal of the 21st century”.[15] 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 government benefits and health care.[16] Individuals with the condition 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.[17][18]

Psychosocial theories

While ME/CFS is now recognised as a biological condition, it was historically seen as being perpetuated by psychological factors and a small minority of researchers still hold this view.[1][19] Many clinicians are unfamiliar with ME/CFS or believe it to be caused by psychological factors, due to being educated at a time where this was the dominant theory.[1] Clinicians holding psychological views on ME/CFS has serious negative effects on healthcare for patients, as it erodes patient-provider trust, tests the provider's self-assurance and capacity to share power with the patient, and raises problematic issues of reparation, compensation and blame.[20][1]

Biopsychosocial model

The biopsychosocial model is a tool used by psychologists and psychiatrists to investigate how psychological disorders occur. It investigates biological, psychological, and social factors. From the early 2000s to the early 2010s, before there was conclusive evidence that ME/CFS is a biological disease, this was the dominant theory behind ME/CFS, despite being considered as controversial.[21] The biopsychosocial model adequately represents chronic fatigue secondary to psychiatric conditions, but not ME/CFS.[22]

It was proposed in 1998 by Vercoulen et al.[23] It has been, and to a lesser extent still is, being used to advocate for the controversial and potentially harmful treatments: graded exercise therapy and cognitive behavioural therapy.[24][25] The model is still supported by some psychiatrists such as Simon Wessely and Micheal Sharpe. As a founding member of the Science Media Centre, Wessley has been accused of using his influence to promote media reporting of ME/CFS as a psychosocial illness, which is still common, despite ME/CFS being considered as biological by major health bodies.[26] The model is often considered a major cause of patient harm.[21][1]

Mass hysteria

Epidemic cases of myalgic encephalomyelitis (ME) were called mass hysteria by psychiatrists McEvedy and Beard in 1970,[27] provoking criticism in letters to the editor of the British Medical Journal by attending physicians, researchers, and nurses who fell ill.[28][29][30][31][32][33][34][35][36][excessive citations]

The psychiatrists were criticized for not investigating the patients they described,[37] and their conclusions have been refuted.[38][39][40] In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity.[41]

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.[42]

Research related

Lack of funding

Governments and health organisations have been criticised for their lack of funding into ME/CFS research. ME/CFS is one of the most underfunded diseases compared to disease burden.[43][44] The funds are only approximately 3-7% of what comparable diseases are allocated.[43][44] Meanwhile the economic impact of ME/CFS is estimated at 149-362 billion USD in the United States alone.[44]

XMRV retrovirus

Main article: Judy Mikovits § XMRV and myalgic encephalomyelitis/chronic fatigue syndrome
XMRV, a virus claimed to be associated with CFS in a paper that was later retracted

In 2009, the journal Science[45] published a study that identified the XMRV retrovirus in blood samples of a population of people with CFS. After the Science publication, media attention generated interest in the XMRV virus worldwide. Doubts over the legitimacy of CFS had long caused patient frustration about the marginalization of the debilitating illness, and persons with CFS and their support organizations were optimistic the cause of their symptoms had been found.[46]

Many countries reacted quickly to protect the blood supply from the XMRV retrovirus by banning persons with CFS from donating blood. The United States funded a 1.3 million dollar study to try to validate the findings, and some people with the illness started taking antiviral drugs in hopes of symptomatic improvement.[46] Organizations adopting these or similar measures included the Canadian Blood Services,[47] the New Zealand Blood Service,[48] the Australian Red Cross Blood Service[49] and the American Association of Blood Banks.[50] In November 2010, the UK National Blood Service permanently deferred ME/CFS patients from donating blood to prevent potential harm to the donor.[51]

Many studies failed to reproduce this finding,[52][53][54] and recriminations of misconduct from the various stakeholders grew angry and bitter.[46]

In 2011, the editor of Science formally retracted its XMRV paper[55] while the Proceedings of the National Academy of Sciences similarly retracted a 2010 paper which had appeared to support the finding of a connection between XMRV and CFS.[56] Studies eventually concluded that neither people nor the blood supply had been infected with the XMRV virus, and the origin of the virus was likely a lab contaminant in the supplies used by the polymerase chain reaction (PCR) process of the studies that found virus in blood.[57]

PACE trial

Main article: Chronic fatigue syndrome treatment § PACE_trial_controversy
Two graphs showing that PACE trial participants reported lowered fatigue and modestly better physical functioning after undergoing GET and CBT
Outcomes reported by the PACE trial

PACE was a large trial investigating the efficacy and safety of three 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 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)[58] 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.[59][60][61]

One 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."[62][63] In 2011, Lancet Editor Richard Horton defended the trial, calling 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."[64][65]

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".[66] 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."[67] Professor Jonathan Edwards of University College London (UCL) has written that the PACE trial "is an unblinded trial with subjective outcome measures. That makes it a non-starter in the eyes of any physician or clinical pharmacologist familiar with problems of systematic bias in trial execution."[68]

The full research data for the PACE trial was requested by both patients acting as citizen scientists, and by other researchers but was initially denied until a 2016 tribunal ordered the data be released.[69] Several researchers published a re-analysis of the PACE trial data, but drawing the conclusion that the CBT and GET treatments were not effective and possibly not safe.[70][71][72][73] The full PACE trial outcome data showed that the treatments did not result in patients being able to return to work or study,[74] and that they were not able to walk significantly further after treatment.[73] This new information was one of several factors that lead to the UK deciding to complete a full review and update to its diagnostic and treatment guidelines for ME/CFS.[69] The 2021 guidelines no longer include GET or CBT as treatments.[75]

Research funding diversions at the CDC

In 1998, William Reaves, a director at the Centers for Disease Control (CDC), alleged deceptive Congressional testimony was given by officials at the agency concerning CFS research activities conducted by the organization; specifically, funds for programs intended for CFS research were diverted to other projects and not reported. He also stated he was retaliated against by his superior, Brian Mahy, after he reported the irregularities.[76][77]

A Government Accounting Office (GAO) investigation disclosed almost 13 million dollars for CFS research had been redirected or improperly accounted for by the CDC. The agency stated the funds were redistributed in order 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.[76]

In response, the CDC pledged reforms to accounting practices to reduce misuse of funds earmarked for specific diseases. Additionally, the money diverted from CFS research was to be restored over a period of three years.[76][needs update]

Claims of harassment

In 2012, several UK researchers involved in the PACE trial, who adopted the controversial psychosocial perspective, reported to the press that they had been verbally abused by patients, and one reported receiving death threats.[63] The claims were pushed by the Science Media Center, which has a history of portraying ME/CFS as psychosocial and of which one of the founders, Simon Wessley, is a psychosocial researcher on ME/CFS.[78][15][79][80][26] This was criticised by patients and advocates as being a coordinated effort to dismiss legitimate concerns about the methodology behind psychosocial studies into ME.[78][15][13]

A tribunal judge investigated the claims of harassment in relation to the PACE trial. They ruled that the claims of harassment had been "wildly exaggerated by the trial authors and their expert witnesses".[69] Blease and Geragty found "no compelling evidence" the vast majority of ME/CFS patients or their advocacy organizations had adopted "militant political policies or behaviours", and reported ME/CFS activists used public discourse and scientific publications analogous to 1980s "AIDS" activists. They concluded the medical establishment's negative perceptions of persons with ME/CFS, and indifference to patient's opinions conceptualized the ME/CFS community's discontent.[69]

Harms to patients

Harmful treatments

Many of the treatments proposed based on outdated (bio)psychosocial views of the illness have been criticised for harming patients.[1][81][75][71]Reports of medical harm to patients resulting from the use of cognitive behavioral therapy (CBT) as a primary treatment and the use of graded exercise therapy (GET) have arisen.[82][71][83] A controversial clinical trial of the Lightning Process in children,[84] led to it being specifically forbidden in the NICE guidelines.[11][84] A number of publications by Esther Crawley promoting GET have been corrected due to inaccurate ethics statements.[85]

Deaths and suicide

Studies show medical neglect, trivialisation, and psychologization have contributed to increased risk of suicide in patients suffering from ME/CFS.[86][87] In some severe cases, neglect by clinicians has led to complications of the disease which ultimately led to the death of the patient.[88][89][90] Some patients with severe and very severe ME/CFS are unable to swallow or properly digest,[11] when this is neglected or misdiagnosed as a psychological condition (such as anorexia nervosa), malnutrition can follow, with a risk of death.[4] Proper care for patients with severe feeding problems stipulates total parenteral nutrition for short term cases and using feeding tubes for long term cases.[4]

A notable case is that of Maeve Boothby O-Neill, a 27 year old women who passed away from very severe ME/CFS in 2021. As her condition gradually worsened, she became too unwell to properly feed and hydrate herself. At first the NHS doctors gave her feeding aids, but insisted upon feeding her much more than her body could handle which exacerbated her condition through post-exertional malaise. The only feasible option left was total parenteral nutrition, but due to the doctor's belief that the patient’s condition was largely psychological, they refused this route. A month later, the patient died of malnutrition.[91][92][88] An inquest into Maeve Boothby O-Neill’s death was opened by the Exeter and Devon Coroners, and is currently ongoing. Dr. Anthony Hemsley, the director of the Royal Devon and Exeter NHS Foundation Trust, has testified that the NHS has no policy and no facilities for treating severe (housebound) or very severe (bedbound) patients anywhere in the United Kingdom.[93]

Misdiagnosis, under-diagnosis, and delays in diagnosis

Because of a lack of awareness and education about ME/CFS in the medical community delays in diagnosis and misdiagnosis are common.[11][94] A large proportion of ME/CFS patients are undiagnosed; its true prevalence is therefore unknown.[95] ME/CFS patients can be misdiagnosed with a wide variety of conditions, common ones include psychosomatic disease, depression, burnout, and neuresthenia.[12] It is common for diagnosis to take over 5 years post disease onset, and visits to a large number of medical professionals.[96][12][97]

Involuntary psychiatric hospitalisation

There have been reported cases of forced psychiatric hospitalisation of ME/CFS patients.[90][98][99] In these cases clinicians assumed ME/CFS was of psychological origin, or misdiagnosed a mental illness.

A notable case is that of Sophia Mirza. Mirza was forcibly removed from her home and sectioned for two weeks by her doctors, who had come to believe her condition was psychosomatic, an action which her mother and sister claim severely worsened her condition, through post exertional malaise. Her health deteriorated after being released from the psychiatric unit, and two years later she died.[90][100] An inquest into her death revealed it to be due to "renal failure as a result of chronic fatigue syndrome".[101]

Disability compensation

A 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."[102] This runs contrary to current scientific evidence which shows ME/CFS is "unambiguously biological". [103]

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Further reading

  • Johnson H (1996). Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Crown Publishers, New York. ISBN 978-0-517-70353-3.
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