David J Black: PACE-gate. Have we been Waddelled?
October the 29th 2021 was something of a red-letter day for those who believed the psychiatric biopsychosocial (BPS) model had, for too long, maintained an iron grip – some might even say an unjust monopoly – on the officially favoured treatment regime for ME-CFS, for it was then that the National Institute for Clinical Excellence (NICE) overturned guidelines which had been in place since 2007. Under the new guidelines the twin pillars of Cognitive Behavioural Therapy and Graded Exercise Therapy, which had underwritten the BPS approach, were dropped. The Guideline Development Group of 2007 had included a number of members highly sympathetic to the BPS doctrine, such as Dr Esther Crawley, Professor in Child Health at the University of Bristol, an energetic proponent of the model as well as the reputed second highest funded researcher in Britain.
Dr Crawley was known for the heroic victim portrayal of herself in which she was harassed and threatened (yeah, even unto death, apparently) by ME/CFS ‘activists’. With the help of the Information Commissioner, The Tymes Trust, a charity for young people with ME/CFS, extracted a less lurid version of events from her employer, the University of Bristol, which admitted that it had no record of any harassment, while a 2016 information tribunal ruling on trials in which she was involved found that “no threats have been made to either researchers or participants”.Thus the grisly martyrology she outlined in, for example, such articles as ‘Threats of Persecution’ (Science Media Centre; Views from the Front Line) seemed, on the whole, to be quaintly fictional.
Another BPS proselytiser on the 2007 Guideline Development Group was Dr Alastair Santhouse, author of ‘Head First; a Psychiatrist’s Stories of Mind and Body’. His glowing regard for the eponymous doyen of a cult frequently referred to as ‘the Wessely School’ was fulsome and unqualified. Sir Simon Wessely, the foremost proponent of the biopsychosocial model and his former Maudsley colleague, was, he wrote, ‘an extraordinary man, a genius.’
By one calculation, 11 of the 18 members of the 2007 guideline group had an “overt psychiatric bias” towards the Wessely School. Group chairman Professor Richard Baker, for one, described the PACE trial as “a good example of the work being undertaken within the UK at present” though it had already been much criticised. Others like Dr William Hamilton, Dr Richard Grunewald, and Ms Jessica Bavinton, had consistently expressed support for the BPS model.
In 2021, however, the centre failed to hold. PACE, now a blot on the escutcheon of UK health research, was being condemned not only in Britain, but in the USA, where The American Journal of Nursing declared: “Advocates hail rejection of debunked exercise and cognitive behavior therapies. The U.S. Centers for Disease Control and Prevention (CDC) in 2017 eliminated these largely useless and, in some cases, harmful therapies from its recommendations. That NICE is now following suit is good news, though many say it is long overdue.”
NICE’s new guidelines were fiercely resisted, and three BPS inclined members of the guideline group resigned in protest. The claimed “evidence base” for the BPS model’s reliance on CBT and GET was some way short of robust science, it was argued, with one staunch American critic, Berkeley-based Dr David Tuller, indelicately labelling it “crap”. Undaunted, the BPS faction would carry on with research projects, one of which was a £2 million + trial study published in 2021, and wholly funded by the National Institute of Health Research (NIHR).
Cognitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic Seizures: A multi-centre randomised controlled trial could perhaps be construed as a variation on the PACE theme. Its 11 investigators, essentially a Who’s Who of CBT/GET enthusiasts, included Dr Trudie Chalder, who had originally developed the CBT model with Simon Wessely and others, and had been a leading PACE investigator.
At first glance ME/CFS and dissociative non-epileptic seizures may seem to be unconnected, but several studies into a phenomenon known as neuronal kindling such as ‘An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ (Leonard A Jason, et al) stress the neurological, rather than psychological, vulnerability of ME/CFS sufferers to such events. Despite this, an individual observed to be suffering from such a seizure – at least in Scotland – may be denied access to treatment in a hospital if a psychiatrist has stated in that patient’s medical record that his or her condition is deemed ‘behavioural’.
The study by Chalder and her ten fellow authors could, in some sense, be seen as an attempt to deliver a supportive adjunct to her much-criticised PACE trial. If so, it could only have been a disappointment, given the headline conclusion: “This trial showed that there was no significant benefit of adjunctive dissociative-specific CBT in reducing the frequency of dissociative (non-epileptic) seizures at 12 months.”
One imagines that if this were to be subjected to an objective assessment by, say, the Comptroller and Auditor General, a simple question might arise. Was it actually ethical for the NIHR to throw £2m at a research project which so closely dovetailed with the much criticised £5m PACE trial, and benefited those promoting the psychogenic, rather than physiological or biomedical, model of ME/CFS? It would be a mere five months after the publication of this publicly funded (and failed) project that NICE would get its act together and recommend against the favoured BPS model twin pillars of CBT and GET.
But this is a tale with beginnings far in the mists of time. For Simon Wessely, at least initially, ME/CFS was a variant of ‘neurasthenia’ a condition afflicting over-excitable and tightly corseted Victorian ladies prone to ennui and lassitude, it was thought. Prior to that, there had been the now infamous 1970 McEvedy and Beard report on the 1955 Royal Free Hospital ME/CFS outbreak which claimed “with Royal Free disease it is concluded that there is little evidence of an organic disease affecting the central nervous system and that epidemic hysteria is a much more likely explanation” since they were “psychosocial phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients or altered medical perception of the community”.
McEvedy and Beard dismissed a detailed study on a 1934 outbreak in Los Angeles County Hospital by Dr Alexander Gilliam of the US Health Service, which had stated: “It would be manifestly erroneous to consider as hysteria the emotional instability associated with this illness.”
No matter. Although the word ‘hysteria’ would later be eschewed in BPS circles and replaced with such terms as ‘abnormal illness behaviour’, ‘conversion disorder’, ‘maladaptive behaviour’, and ‘pervasive refusal syndrome’, the underlying concept had its uses, particularly as far the Department of Work and Pensions (DWP) and the health insurance industry were concerned.
If ME/CFS could be classed as an ‘all in the head’ condition, then benefit payments and insurance claims would be massively reduced. This helps to explain why the Department of Work and Pensions (DWP) was a PACE funder, and also why a key player in the rise of the BPS model was Professor Sir Mansel Aylward, medical director and chief scientist at the DWP and later director of the UnumProvident Centre for Psychosocial Research at Cardiff University School of Medicine.
Sir Mansel had vigorously pursued his BPS agenda with surgeon Gordon Waddell, who dismissed many disabled benefit claimants as “malingerers” using his mechanism of ‘Waddell signs’. This did not altogether convince physicians and lawyers in the USA, however, where the phrase ‘you’ve been waddelled’ might describe an ME/CFS applicant’s disability rejection.
Those suffering from the illness, particularly in the UK, had the odds well and truly stacked against them. For one thing, with their condition classed as psychiatric, they were instantly stigmatised as likely to be irrational and over-emotional, and lampooned in the press as work shy malingerers and benefit scroungers faking a condition widely derided as ‘yuppie flu’. Much of this poison was being spread by a lobby group known as The Science Media Centre (SMC) one of whose founding trustees was Sir Simon Wessely. Other SMC ‘hot topics’ included attacks on opponents of GM crops and climate change, while SMC funders included such corporations as Monsanto.
Sir Mansel also provided support for a 2001 DWP funded Oxford conference Malingering and Illness Deception. The conflicts of interest were blatant. His wife, Lady Angela, co-founded the Nationwide Medical Examination Advisory Service Ltd (or MediProbe) when her husband was on the Board of the Benefits Agency Medical Service and exploring outsourcing possibilities.
The free market synergies were buzzing, but would come back to haunt him in 2012. After speaking at a Disability Management conference Sir Mansel was handed a letter signed by 420 ME sufferers and supporters damning the BPS model as “nothing short of a creation of the health insurance industry” used to defraud claimants under the Work Capability Assessment which he himself had devised, to the outrage of those who felt it was a stitch up by the DWP and corporate interests such as UnumProvident, as well as their ‘fitness for work’ interrogators Atos, Capita, and Maximus.
Matters in Scotland, where the health portfolio was devolved, were no better. Indeed they were probably much worse. Scotland, after all, is the only part of the mainland UK where NICE’s writ doesn’t run, thus there was no inhibition on the continuing use of CBT and GET after they had both been dropped from NICE guidelines and roundly discredited in Britain and America.
Even so, as far as ME/CFS was concerned, the situation north of the border seemed, at one point, to be markedly more promising than the byzantine complexities arising from the hard fought factional divide between biomedical and psychogenic interests down south.
But then, thanks to a catastrophic failure of the democratic process, the hopes of Scotland’s ME/CFS community would be cruelly dashed, as we shall see.
David J 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.