‘Our patients are terribly ill, misunderstood and suffer at the hands of a poorly informed medical establishment and society’ – Nancy Klimas, Professor of Medicine and Immunology, University of Miami.
My other article, ‘ME sufferers are still neglected and maltreated’ quoted scientific evidence that ME (myalgic encephalomyelitis) is a physical illness. This article considers the arguments of those who believe that vested interests have sought to retain the idea of ME as a psychological disorder.
Media reports of the assisted suicide of 31-year-old ME sufferer Lynn Gilderdale in 2008 described her death as a merciful release from a physically and emotionally unbearable life. Lynn was bedbound for 17 years, unable to sit up or speak. She had to be fed through a tube and received regular doses of morphine.
Medical staff had told her that ME is not a real illness and tried to force her to move about. In a post-mortem, a pathologist found ‘dorsal root ganglionitis; infected nerve roots and nodules of nageotte, a cause of excruciating pain and sensory nerve damage’. Lynn’s mother lamented the cruelty of some doctors and other people who had accused Lynn of choosing her ‘limbo’ existence.
The highly influential psychiatrist and government adviser, Professor Simon Wessely (heeded by much of the media) had claimed that ME patients were clinging to a subjective belief that their illness is ‘real’ because ‘it is better for their self-esteem’. (Pfizer Invicta Pharmaceutical 1992:4-5). How could the discrepancy between the psychiatric description of ME as a behavioural disorder and the obvious physical reality of Lynn Gilderdale’s illness remain unchallenged?
Does anyone benefit from calling ME a behavioural disorder? Margaret Williams (pseudonym), a retired senior NHS clinician, argues in The Power of Propaganda: ‘There can be no doubt that the Wessely School have substantial conflicts of interest as they are involved with and work for the permanent health insurance industry . . . Their aim is to ensure that people with ME/CFS are removed from disability payment: UNUM’s [a leading life and disability insurance company] CFS Management Plan clearly states: “Diagnosis: Neurosis with a new banner”; Attending physicians [must] work with UNUM rehabilitation services in an effort to return the patient/claimant back to maximum functionality with or without symptoms.’
Williams reveals correspondence to Lord Hall, Director General of the BBC, in which the Countess of Mar describes the tactics employed by the ‘Wessely school’ to suppress evidence that ME is a physical illness: ‘The Science Media Centre (SMC) began work in 2002 to operate like a newsroom for national and local media when science stories hit the headlines. It is funded by, amongst others, the pharmaceutical and chemical industries.
The SMC’s covert purpose is to ensure that journalists and the media report scientific and medical matters only in a way that conforms to Government and industry’s “policy” on the issues in question. To that end, the SMC provides “training days” for journalists so that what they report on scientific and medical issues is effectively influenced and controlled by the SMC . . . Its founder member is psychiatrist Professor Sir Simon Wessely . . .’
The Countess wrote: ‘It seems that the BBC relies on briefings provided by the Science Media Centre (SMC) without bothering to verify the facts. Such lazy reporting is unacceptable because it is misleading and is harmful to the public.’ Williams refers to a letter written by Gabriella Lewis, a barrister, to the Leveson inquiry: ‘Not one article in the mainstream press concerning biomedical research has been published since October 2009 . . . It is time that the Press Complaints Commission looked into how the media is effectively being controlled by Professor Wessely through the Science Media Centre.’
Wessely’s definition of ME dominated medical journals, and he rebuked journalists who revealed facts that didn’t comply with his ideology. The Daily Mail’s Sonia Poulton asked in an article: ‘Why are records pertaining to ME locked away in our national archives at Kew for 75 years? The normal period would be 30 years. 75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.’ The author blogged in response to an email she received from Wessely about another article: ‘He didn’t like me blaming psychiatry for standing in the way of research and treatment . . . The truth is this: I have done my research and he knows it . . . there comes a point when you know what you know and no amount of sharp words can change that.’
Williams revealed that ‘Professor Wessely’s wife, Dr Clare Gerada, was at that time chair of the council of the Royal College of General Practitioners when the first e-training course on ME/CFS was launched by the Royal College of General Practitioners on May 31 2013.’ A training handout stated: ‘We know that there is no disease in CFS.’ CFS stands for ‘Chronic Fatigue Syndrome’, a name contrived to make ME ‘disappear’ by focusing on one symptom. ‘A lot of doctors prefer to call it Chronic Fatigue Syndrome – often those who don’t quite believe in it as an organic syndrome.’ (Dr Nigel Speight, consultant paediatrician).
Professor Wessely was involved in a clinical trial, funded by taxpayers, known as PACE (discussed in my other article) which tested psychiatric treatments for ME. Wessely might genuinely have believed that his methods would help patients recover. However, if that was the case, why, as Professor Malcolm Hooper revealed, did the PACE trial advocates attempt to suppress data that undermined its ‘predetermined’ outcomes? ‘From 2011 to 2016 there was a concerted attempt by all involved in the PACE trial to prevent the raw data from this publicly funded study being released (i.e. by the Principal Investigators themselves, editors, publishers, funders and sponsors including the Department of Health, the Department for Work and Pensions (DWP), the Office of the Scottish Chief Scientist, the MRC and Queen Mary University of London). This is technically illegal since the Principal Investigators of such publicly-funded research are required to make the obtained data available to bona fide interested scientists.’
Professor Hooper noted that PACE was the first clinical study to be partly funded by the DWP. A parliamentary inquiry into the status of ME and research into causes and treatment in 2006, the Gibson report, stated: ‘We recognise that if ME/CFS remains defined as psychosocial, then it would be in the financial interests of both the DWP and the medical insurance companies.’
Did a ‘blatant conflict of interest’ colour the perception of the Medical Research Council which turned down grants for biomedical research into ME whilst funding psychiatric research? The Gibson report implies this might the case: ‘In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in the ME Sufferers Bill in 1988.’
Financial motives for promoting psychiatric therapies as the only available treatments for ME probably backfired for the government, as independent journalist Nathalie Wright suggested: ‘The waste of human potential caused by ME was recently reckoned to cost the UK economy £3.3billion a year in a report by the Optimum Health Clinic Foundation.’ The Gibson report emphasises that ‘money invested in discovering the causes and potential treatments now could save money in the long term . . . We recommend that this condition be recognised as one which requires an approach as important as heart disease or cancer . . . The origins and causes of CFS/ME will only be found through further scientific research.’
Public awareness of the real severity of ME can only help to empower this change. At the very least, it can challenge the controlled culture of disbelief and hostility which has ostracised chronically ill sufferers for decades.