David J Black: Welcome to the machine
Prone to making the facts fit their theories, academics have, for decades, gaslit ME/CFS sufferers by telling them their condition was all in their heads. To compound matters, a pliant British media happily preached the false biopsychosocial gospel and misery ensued. But the pandemic has changed everything: MPs have today called on the UK government to spend £100 million a year to research treatments for Long Covid – a sum that will hopefully put paid to an era of lies. Read the last part in David J Black’s series for SLN here.
To comprehend the ‘greatest medical scandal of the 21st century’ as described by Carol Monaghan MP it’s important to realise that for decades the biopsychosocial (BPS) model was powered by a propaganda machine aimed at the UK media which preached that ME/CFS victims were, on the whole, deluded by an ‘aberrant belief system’ in which they merely imagined themselves to be ill.
Felled by a viral illness which brought ‘brain fog’ and severe muscle weakness, they were, under the BPS doctrine, nurturing a fantasy that they were actually sick. They should be made fit for work again with ‘coping mechanisms’, re-engage with physical exercise, and conquer their ‘yuppie-flu’ delusion. We now know that remedy was a fraud. Not surprisingly, many patients, aware that this placed blame for the illness on themselves, viewed it as an exercise in ‘gaslighting’ which suited an unsympathetic medical establishment, a Department of Work and Pensions keen to cut welfare spending, and a healthcare insurance industry over-mindful of profits.
Above all, it was pitiless media coverage which consistently denigrated ME victims. One could philosophise as to how these press cruelties came about. Psychiatry’s low point was the 1970s, at around the time Miloš Forman’s One Flew Over the Cuckoo’s Nest was released. The discrediting of Freudian psychoanalysis, tales of CIA collusion in mind-bending drug experiments, and the horrors of lobotomy and electro-convulsive therapy had left its with a serious ‘legitimation crisis’ and much confusion as the ‘anti-psychiatry’ of R.D Laing, Thomas Szasz, and Michel Foucault gained a counter-culture following, while the libertarian Marxist Peter Sedgwick developed a line in anti-anti-psychiatry in his 1982 book Psycho Politics.
Some believed psychiatry’s UK redemption arrived with Dr Anthony Clare’s radio confessional, In the Psychiatrist’s Chair, in 1982. One of the most successful BBC radio series ever, it echoed Hugh Burnett’s Personal Call and TV’s Face to Face, in which politician-turned-TV-presenter John Freeman interrogated such celebrities as Tony Hancock and a tearful Gilbert Harding.
Clare, a one-man charm offensive whose on-screen manner was endlessly re-assuring, was a brilliant interrogator. The programme had, for some, a serious ethical flaw, with the deeply personal being exploited as entertainment, but it made for great radio for the best part of 20 years. Guests included Spike Milligan (with whom he co-wrote a book) Maya Angelou, Vladimir Ashkenazy, Anthony Hopkins, and Jimmy Savile. Politicians prepared to risk (or massage) their egos included Tony Benn, Nigel Lawson, and Edwina Currie.
A champion of the BPS model, Anthony Clare chaired a 1990 Oxford ‘consensus’ meeting, ‘Chronic Fatigue Syndrome: Guidelines for Research’ written up in The Journal of the Royal Society of Medicine by Professor Michael Sharpe with help from others in the BPS high command – Clare himself, Simon Wessely, Anthony David and Peter White. Largely through ingenuity and charm, Anthony Clare pursued what medical sociologist David Pilgrim has described as the BPS model’s “rhetorical justification” while challenging the “biomedical reductionist” approach.
BPS prospered with psychiatry’s growth. There was a fourfold increase in NHS training numbers throughout the 80s and the 90s as ‘care in the community’ shut down psychiatric units where patients could access a range of medical treatments and therapies. In 2008 this was boosted when health minister Alan Johnson earmarked £170 million to train 3,600 ‘psychological therapists’, the majority specialising in CBT.
The BPS model was on a roll, though not everyone was convinced. Three Scottish sociologists who contributed to the 25th British Social Attitudes report (Sage 2009) found a lack of widespread acceptance of formal therapeutic intervention, concluding “a sizeable proportion of the population remains wary of the idea of therapy or counselling…”
Some in medicine objected. A 2008 ‘Wake up call for British psychiatry’ had no fewer than 37 signatories, both academic and clinical. ‘Craddock et al’ (British Journal of Psychiatry) has been described as a manifesto which defended the biomedical approach to research and practice, though curiously a leading proponent of the BPS model was listed. The concern was that an over-emphasis on the psychosocial might induce a “creeping devaluation of medicine [which] disadvantages patients and is very damaging to both the standing and understanding of psychiatry in the minds of the public, fellow professionals, and medical students”.
A full exploration of the turf-war between psychiatry’s biomedical and BPS factions has no place here (David Pilgrim’s 2002 paper ‘The biopsychosocial model in Anglo-American psychiatry: Past, present, and future?’ is an excellent starting point.) For BPS acolytes the message had to be sold, and sold hard. The charismatic Anthony Clare had demonstrated the value of media exposure as far as developing a following was concerned, but was it enough?
In a 1988 paper ‘Post-viral fatigue syndrome: time for a new approach’ Simon Wessely, Anthony David, and Professor Anthony Pelosi of the university of Glasgow, while distancing themselves from McEvedy and Beard’s (now embarrassing) hysteria thesis, nonetheless identified a “yawning gap” in psychiatric research, partly due to “hostile responses from doctors who believe that psychiatric illnesses are nor real illnesses” and whose “partisan viewpoints – have added to patient’s distress”. This was, in essence, a BPS declaration of war on the biomedical faction.
By 1994 Simon Wessely clearly felt that a media strategy should underpin the BPS plan. In ‘Professional and popular views of chronic fatigue syndrome’ (BMJ) the coverage of CFS in British scientific journals dating back to 1980 was compared to that in trade papers, national newspapers, and women’s magazines. Press coverage had allegedly “amplified and distorted divisions in the research community”. since the press coverage, unlike that in peer group reviewed journals, lent towards an organic view of CFS, whereas “a biopsychosocial model would be more appropriate”.
By this time the leading BPS practitioners were well supported by governments of all stripes, convinced that the BPS model was cost-effective. Simon Wessely would later be given a knighthood. Professor Peter Halligan, whose patient-traducing book Malingering and Illness Deception carried forth the message of Sir Mansel Aylward’s notorious 2001 conference of the same name, has since been rewarded with the post of chief scientific officer for Wales. Above all, state-backed research funding was pouring in to, amongst other things, the ill-fated PACE trial.
There were critics. In 1999 law professor Ziauddin Sardar, writing in The New Statesman, asked how Wessely, who “denies the existence of Gulf war syndrome – and ME” had “a key position in our socio-medical order – who has chosen and vetted him – and by what criteria and procedures? Where is the debate over the shaping of such research? And when will we have the first officially sponsored study of such a problem which the sufferers do not have the occasion to call a whitewash?”
To maintain a BPS hegemony media support was vital. Simon Wessely joined forces with Fiona Fox, formerly of the Revolutionary Communist Party, along with sister, Claire (later appointed Baroness Fox of Buckley by Boris Johnson, reportedly on the advice of former head of the Downing Street policy unit, Munira Mirza, another RCP alumnus!)
In one of the most jaw-dropping volte-faces in modern UK political history the former Trotskyite RCP and its Living Marxism successors experienced a moment of epiphany which pin-balled them en masse to the free-market libertarian far right. One day, let us hope, a scholar in the league of Peter Hennessy will write an authoritative book on this miraculous event, but for the moment we must focus on Simon Wessely who, with Fiona Fox, set up a lobbying body the Science Media Centre, with the Royal Institution’s Baroness Susan Greenfield as its self-described “midwife”.
The SMC’s ostensible purpose was to connect scientists with journalists and broadcasters, but a cursory look at its funders, which included corporations like Monsanto, reveals a ‘hired-gun’ PR agency engaged in the management and manipulation of news. It was to be remarkably effective in its support of the BPS model, generating negative headlines about so-called ME ‘activists’ who were allegedly harassing researchers like Simon Wessely.
The headlines reveal the viciousness of these attacks on the sick: A 2013 Times story by climate change denier Mike Hanlon had Simon Wessely battling “a sustained terror campaign of ME activism” while a “specialised unit at the Metropolitan Police dedicated to monitoring the threat” had been established “but no one at Scotland Yard will speak publicly about this” – probably because no such ‘specialised unit’ existed. NHS psychiatrist ‘Max Pemberton’ (a fake byline) who wrote in The Daily Telegraph and Daily Mail, was also editor of Spectator Health, and a Reader’s Digest contributor. His grisly yarns of doctors enduring “harassment, bullying, and death threats for attempting to help people” ran under such dubious headlines as “How the ME zealots tried to terrorise me”. The Economist, too, joined the frenzy, and a Telegraph headline screamed: “It’s safer to insult the prophet Mohammed than to contradict the armed wing of the ME Brigade.”
This litany could go on. How about David Aaronovitch of The Times comparing ME activists to MMR anti-vaxxers? or Rod Liddel’s fatuous assertion in The Spectator that “the ME lobby is just a symptom of our stupidity about mental illness”; or Observer science editor Robin McKie’s claim that “Chronic fatigue syndrome researchers faced death threats from militants” who were “as dangerous as animal rights activists”. If this was the biggest medical scandal of the 21st century it was equally a major media scandal.
The BBC was particularly obliging. Today science editor Tom Feilden claimed a “cabal of activists” insisted that “the real cause of ME/CFS was an as yet undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy”. the SMC nominated him for a 2012 Science Journalist of the Year Award, which he duly won. He is now (2022) a Today editor, while BBC director general Tim Davie declines to answer freedom of information questions about the corporation’s SMC tie-ups.
In such cases the question arises: who, out of this entire cast, should be held to account legally? For guidance (irony apart) we might look again to Professor Anthony Pelosi, who, in 1995, lodged a written complaint with the British Psychological Society which accused Dr Hans Eysenck of colluding in fraudulent and unethical research. Eysinck is said to have received around £800,000 from the tobacco industry, in return for which he produced screeds of slanted research such as ‘Smoking, Health, and Personality’ in which he claimed that lung cancer was caused by genetic factors, rather than tobacco smoke.
The British Psychological Society refused to investigate Dr Pelosi’s complaint. The teflonocracy, it seems, will always look after its own. For Scotland’s ME/CFS sufferers, however, there was a brief interlude during which it seemed things might turn out differently. But then fate intervened.
David Black’s forthcoming book The Great Psycho Heist. Is the ‘biggest medical scandal of the 21st century’ about to go viral in the wake of Long Covid? is currently in preparation.