A Recent History of the Politics of ME

ME is an illness with a long history in which politics has played an important role. The controversy surrounding ME originated with a paper by the psychiatrists McEvedy and Beard, published by the British Medical Journal in January 1970, which resurrected the age-old ‘hysteria’ diagnosis beloved of certain medical professionals when dealing with female patients. McEvedy and Beard surmised, working with patient notes from the Royal Free Hospital ME outbreak and without examining a single victim, that the majority of ME patients were female (by no means established at the time) and ergo it must be a hysterical condition. Their determination that ME was a psychosomatic, behavioural condition, contrary to the World Health Organisation’s classification of ME as a neurological disease, gained increasing favour among UK medical professionals (perhaps surprisingly, as M & B failed to provide any testable scientific evidence to support their hypothesis). Over the last 30 years ME research has been dominated by a small group of psychiatrists who have built their careers, extremely successfully in some cases, on the biopsychosocial (BPS) approach to the illness, ignoring all biological evidence produced prior or subsequent to their involvement. Politicians and organisations have utilized the BPS model to enact deleterious policies and treatments, e.g. GET and CBT, against patients. The book Science Politics and ME by Dr Ian Gibson (former MP for Norwich North) describes the situation faced by UK ME patients as a ‘scandal in our generation’. The book examines the role of attitudes in government and health organisations claiming they range from apathetic to corrupt.

The interplay between politics, industry and health is often ignored or swept under the carpet by charities and doctors involved in ME, and rarely do they, or patients, appreciate and acknowledge the importance of the mechanisms at work, least of all attempt to address them in a meaningful way. Patients can be forgiven for their ignorance given their understandable assumption that the state and medical profession are working in their best interest, but for those supporting patients and in positions of advocacy it is crucial for understanding what needs to change in order to achieve better care.

The influence of UNUM, a large insurance company in the US and its relationship with the Department of Work and Pensions has revealed how consecutive governments have viewed illness and welfare based on ideology rather than patient well being. In 1994 Peter Lilley, the Secretary of State for Social Security hired John LaCascio from UNUM (a company convicted of fraudulent conduct in 2003, resulting in a multi-million dollar settlement and the re-opening of 250,000 insurance claims) to advise on ‘claims management’. A working group was established which included Prof Mansel Aylward, Chief Medical Officer at the Department for Work and Pensions (DWP) and with whom LaCascio authored a paper on the problems with work assessments for pyschosomatic conditions that recommended a reduced role for doctors in assessing patients . The aim was to reduce benefit payments by both introducing a more stringent work test and training doctors in UNUM’s aggressive methods of claims management. They targeted specific illnesses including ME, a disease that Professors Sir Simon Wessely and Michael Sharpe were trying to reclassify as a psychological illness, a reclassification that would save the medical insurance industry millions. Professors Aylward, Sharpe, Wessely and Peter White all proponents of the BPS model of ME attended meetings in Woodstock, Oxford on the topic ‘Malingering and Illness Deception’ and became authors or steering committee members for the infamous PACE trial, the only medical trial to be partially funded by the DWP. The discredited PACE trial was/is used as evidence for the success of the BPS model of ME and consequently to reduce benefit payments and insurance costs: it is used to support coercing patients to undertake courses of CBT/GET as a condition of further support. This is a false economy and academics have serious concerns over the BPS model’s use in this way.  More information on how the insurance industry has influenced welfare reform can be found in this publication by Mo Stewart, here by Kitty Jones, here by Jonathan Rutherford and here by George Faulkner.

Not only does this affect government policy on benefits and sanctions but the course of medical research. Psychiatrists with a viewpoint congruent with government policy gain influence not afforded to those researchers treating ME as a physical illness. The UK government claims to accept WHO’s definition of ME as a physical, neurological disease, but its policies heretofore suggest this is not the case. Medical Research Council board membership reflects how the influence of BPS-promoting psychiatrists has biased organisations’ positions on the illness and resulted in limited biomedical research.

‘The MRC’s refusal to accept the international biomedical evidence about ME/CFS may be related to the fact that in 2002 / 2003 the following Wessely School members were appointed to MRC Boards: Professor Trudie Chalder; Professor Anthony Cleare; Professor Anthony David; Professor Anne Farmer, Professor Michael Sharpe, Professor Peter White; Professor Richard Bentall; Professor Philip Cowen; Professor Til Wykes and Dr SM Laurie, with Professors Simon Wessely and Francis Creed having been recent members’ Margaret Williams, 2009

Since 2004, the MRC has, theoretically, spent £6,717,000 on research into ME but only £1,156,000 has been on research into biological aspects of the disease; even then £452,000 was a generalised fatigue study not specific to ME. That leaves a dismal £704,000 for biological research into ME, a condition affecting 250,000 people in the UK, averaging out at £46,933 per year or 18p per person per year. That we cannot verify these figures because the government fails to monitor who has the illness, is a clear indicator of their lack of concern. Such skewing of funds, with the vast majority going to BPS ‘research’, is both inexplicable and unforgivable considering ME is classified as a physical, not a behavioural, condition.

One of the greatest controversies surrounding ME concerns the aforementioned PACE trial. It has accounted for a large percentage of UK MRC research funding, £2,779,000 of its £5 million total cost. The only medical trial in UK history to be part funded by the Department for Work and Pensions and of which Prof. Mansel Aylward was on the steering committee – Aylward is currently the Director of Psychosocial research at Cardiff University, previously called the UNUMProvident Centre for Psychosocial research when they were funded by UNUM 2004-2009. Not only was it a trial for ME/CFS it was also a trial to discern how the psychosocial approach could be used to reduce illness payments by government, and insurance companies. It was designed to test the outcomes on patients for GET, CBT, Standard Medical Care and something they called Adaptive Pacing Therapy. The problems with the PACE are too numerous to mention here but suffice it to say that such is PACE’s infamy in scientific research circles it is now being taught in Universities in the US as an example of how not to conduct a trial.

Undeclared conflicts of interest, poor methodology, outcome switching, extraordinary claims of what is deemed recovery are amongst the serious problems with PACE that have been ignored by numerous organisations who should know better. These include The Lancet, especially responsible as it published the trial after it was fast tracked for publication, the charity Action for ME that provided the illusion of patient support, a lack of research governance and accountability by the bodies that should have been responsible, various governments, royal colleges and health organisations and officials, none of which acknowledged patient and researchers concerns trial’s multiple flaws.

‘CFS/ME remains elusive, only partially standardised, in an on-going battle between all the different actors that want to define it for their own situated interests.’ Karfakis 2018

A comprehensive record of the recent history and politics concerning ME has been documented by Margaret Williams. Her website contains information from 1986 to the present day and is a valuable resource.

More recently patients have been using their voices to educate members of parliament about the dire situation they face and called for a change in the NICE guidelines (which recommend GET and CBT as effective treatments). This has produced some very well informed MP’s leading to a debate in the main chamber of the House of Commons in January 2019 led by Carol Monaghan MP, in which the motion below was unanimously passed.

‘That this House calls on the Government to provide increased funding for biomedical research for the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure that they are equipped with clear guidance on the diagnosis of ME and appropriate management advice to reflect the international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.’

However we have already seen the ME bill 1988, Westminster Hall debate 1999, a Chief Medical Officers Report 2002, the Gibson Report 2006,  House of Lords PACE debate in 2013, all raising the same issues without any change resulting. Furthermore the all party parliamentary group for ME was closed down in 2017. Given that it is clear, as stated in the British Medical Journal in 1978, that this is an organic illness we need a full enquiry to investigate what has gone wrong, how the situation has been allowed to continue for so long, and for the government to put a stop to the neglect patients face on a daily basis. It is time for the UK government to act.