A Recent History of the Politics of ME

ME is an illness with a long history where politics has played an important role. Stemming from the misogyny of hysteria from psychiatrists as seen with McEvedy and Beard, the last 30 years has been dominated by a small group of psychiatrists that have based their careers on the biopsychosocial approach to the illness and have ignored all biological evidence prior or subsequent to their involvement. Politicians and organisations have used the biopsychosocial model as an excuse for deleterious policies against patients and the book Science Politics and ME by Dr Ian Gibson (previously MP to Norwich North) describes the situation patients face in the UK as a ‘scandal in our generation’. The book examines the role of attitudes in governments and health organisations as one ranging 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 themselves and patients seem to appreciate the importance of the mechanisms at work, least of all address them in a meaningful way. Patients can be forgiven for not knowing this when they assume the state and doctors 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 very large insurance company in the US and its relationship with the Department of Work and Pensions has revealed how government views 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 US Insurance firm UNUM (a company eventually convicted of fraudulent conduct in 2003 resulting in a multimillion dollar settlement and the re-opening of 250,000 claims) to advise on ‘claims management’. A working group was set up which also included Prof Mansel Aylward who was the chief medical officer at the Department for Work and Pensions (DWP) and with who LaCascio authored a paper on the problems with work assessments for pyschosomatic conditions that recommends a reduced role of doctors in assessing patients . Their aim was to reduce benefit payments by introducing a more stringent work test and training doctors in UNUM’s aggressive methods of claims management. They targeted specific illnesses and ME was one that Professors Simon Wessely and Michael Sharpe were trying to reclassify as a psychological illness which would save the industry millions. Professors Aylward, Sharpe, Wessely and White all proponents of the biopsychosocial model of illness attended meetings in Woodstock, Oxford on the topic ‘Malingering and Illness Deception’ and all became authors or steering committee members for the PACE trial, the only medical trial to be part funded by the DWP. The discredited PACE trial is used as evidence for using the biopsychosocial to reduce benefit payments and insurance costs and is used to support ensuring patients take CBT/GET as a condition of further support. However this is a false economy and academics have serious concerns over the BPS models 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 and 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 view that is congruent with government policy get an influence not afforded to those who want to treat ME as a physical illness. Previous Medical Research Council board membership reflects how the influence of certain psychiatrists have biased organisations positions on the illness and resulted in very little 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 spent £6,717,000 on research of which £1,156,000 has been on biological aspects and even then £452,000 was simply a fatigue study not ME. That leaves a mere £704,000 which averages out at £46,933 per year or 18p per person per year (based on a the estimated prevalence of ME at 250,000). That we cannot verify these figures because the government is not even interested in monitoring who has the illness, is a serious indictment of their lack of concern.

One of the most remarkable pieces of controversy is the aforementioned PACE trial. It has accounted for a large percentage of UK MRC research funding costing £2,779,000 and £5 million in total. The only medical trial as far as we are aware that has been part funded by the Department for Work and Pensions and of which Prof. Mansel Aylward was on the steering committee (he is now 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 a trial on how the psychosocial approach could be used to reduce illness payouts by government and insurance companies. It was designed to test the outcomes on patients for Graded Exercise Therapy, Cognitive Behavioural Therapy, Standard Medical Care and something they called Adaptive Pacing Therapy. There are many problems with the trial that have been looked into at some length, so much so that it is now being taught in numerous 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 that have been totally overlooked by numerous organisations. The Lancet, who published the trial after it was fast tracked, a large charity Action for ME that gave the illusion of patient support for it, a complete lack of research governance and accountability, various governments, royal colleges and health organisations and officials, none of them acknowledged patient concerns of which there were many and spoken of at the time.

‘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 very comprehensive record of the recent history and politics involved in ME has been documented by Margaret Williams. Her website consists of information from 1986 to present day and is a valuable resource.

More recently patients have been using their voice to educate members of parliament about the dire situation they face and called for a change in the NICE guidelines. This has resulted in some now very well informed MP’s and 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 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 change. 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 this has been allowed to happen for so long and for the government to put a stop to the neglect patients face on a daily basis. It’s time for the government to act.