David J Black

As far as future perceptions of ME/CFS are concerned, Long Covid will be the game changer. The UK Office of National Statistics estimates that around 1.1 million Britons have the condition and a significant number will develop full-blown ME/CFS. Over 10 per cent of Covid long haulers are health service professionals who may be less amenable than previous ME/CFS victims to being told that their suffering is inherently psychosomatic when it is demonstrably post-viral – and they know it.

Prior to this, the psychogenic hypothesis was much bolstered by institutional power dynamics. The chair of the Royal College of General Practitioners (RCGP) from 2010-2013, for example, was well placed to influence family doctors. During her chairmanship, the RCGP issued its METRIC guidelines. With GPs as the gatekeepers, these promoted CBT and GET and described ME/CFS as a range of “medically unexplained symptoms” as distinct from the WHO classification which classed it as a neurological illness. The majority of GP referrals were, in short, directed to psychiatrists.

Ranked by Woman’s Hour as one of the UK’s 100 most powerful women, she also happened to be married to the nation’s most prominent psychogenecist, the soon-to-be president of the Royal College of Psychiatrists, whose views she loyally supported. METRIC has since been withdrawn, and the RCGP now accepts the WHO definition, but that doesn’t alter the fact that for many decades family doctors were often uncomprehending and dismissive when ME/CFS victims sought their help for a condition which, according to the profession’s orthodoxy, was “all in the head”.

At £5 million PACE may have seemed costly, but the government, with more than a hint of panic, is now pouring money into Long Covid research. At the last count it was £18.5 million, with £20 million more to be disbursed this month by awarding authorities UK Research and Innovation and the National Institute for Health Research. The latter has distanced itself from the psychogenic orthodoxy in one sentence: “There is some indication that ‘brain fog’ – one of the recurring pattern of symptoms relating to Long Covid – has a neurological rather than a social cause.”

In the US The National Institutes for Health has earmarked $1.15 billion for research into Long Covid, to the displeasure of such psychogenesists as Canadian psychiatrist Jeremy Devine, who wrote a splenetic op-ed column in the Wall Street Journal by way of rearguard action.

ME/CFS is certainly a perplexing illness of complex aetiology with a variety of possible underlying causes and triggers. It is little wonder that the title of Harvard professor David Bell’s 1991 book on the subject was The Disease of a Thousand Names. The pathways leading to the condition are diverse, and can include an auto-immune disease such as Anti-NMDA receptor encephalitis, a post-viral trigger such as glandular fever, human herpesvirus, or Covid 19. It can also have a bacteriological catalyst, as in pneumonia, or be the consequences of a tick bite, like Lyme Disease.

Beyond that lie a variety of mostly poorly charted external triggers arising from environmental toxins such as Trike, an industrial solvent used in certain paint strippers and degreasing agents; the organochloride Lindane, commonly used as a pesticide crop spray and a head lice treatment until it was banned in 2009; organophosphates, first developed as a nerve agent in 1930s Germany, and later used in mandatory sheep dips in the UK from the 1970s and the treatment of pest infestation in old buildings; and depleted uranium and other battlefield chemicals which affected around 33,000 British soldiers and 30 per cent of US combat troops in the 1990-91 Gulf War. This list could go on.

The official record of UK parliamentary debates, Hansard, is rarely a compelling read, but there are high points, one being the passionate debate of January 24 2019 initiated by Glasgow MP, Carol Monaghan, which attracted near unanimous cross-party backing and resolved among other things “That this House calls on the government – [to support] the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment” for ME/CFS. The consensus was that the psychogenic model had been a dismal failure therefore NICE should abandon the CBT/GET guidelines without delay. The regulator took a leisurely 22 months to comply.

This was not the first time Parliament had touched upon the catastrophe of ME/CFS. In June 2015 the Labour MP Jessica Morden proposed a motion on organophosphate sheep dip poisoning, and described the severely debilitating Chronic Fatigue Syndrome which had laid low one of her constituents. Again, there was a broad cross-party consensus, with one Conservative MP, Ian Liddell-Grainger – a former Berwickshire sheep farmer – coming perilously close to calling out minister George Eustice for lying. The minister was certainly going to some lengths to set out his best exculpatory arguments, such as: “The current balance of evidence suggests that there is no long-term risk of clearly demonstrable peripheral neuropathy from exposure to organophosphates.”

Jessica Morden’s objective was simple. “We want a full inquiry, independent of DEFRA, to allow us to question why farmers might have been compelled to use this chemical with no guidance if governmental research pointed to health impacts.” Ian Liddell-Grainger even favoured something akin to a Royal Commission. The minister refused to grant any sort of inquiry, desperately denying any link between organophosphate sheep dip and ill health, though he was “sympathetic”.

For ME/CFS sufferers, sympathy is the one thing which has been noticeably lacking from Britain’s press and broadcasting media for most of the last half century of ‘psychogenic dominance’. With a few exceptions such as The Guardian and The New Statesman, the tone could reasonably be described, at times, as one of fevered hostility bordering on an almost shameless barbarity. This, it would appear, has suited governments of all stripes for the most cynical of fiscal reasons.

It will soon the 60th anniversary of another great medical disaster. On December 2nd 1961 the sedative and anti morning sickness medication, Thalidomide, was withdrawn. In that case, the role of the press – and in particular one determined editor, the late Harold Evans of The Sunday Times – was crucial in securing a just settlement for the victims and their families. Around 2,000 children in the UK were born with severe limb deformities. Just under 500 would reach full adulthood. Seven years later, thanks to a hard-fought campaign, a settlement was reached with the manufacturer, the government, and the victims’ advocacy groups.

In the case of the Thalidomide scandal, it goes without saying that the heartbreaking press and TV coverage of young children suffering such cruel disabilities could only exert a powerful impact on the public. Whose compassion could fail to be aroused?

With ME/CFS it’s a different matter. Around 250,000 British victims have had their lives wrecked, and there will be more to come in the wake of Long Covid, yet this invisible host, much of it bed bound in darkened rooms, is not immediately identifiable. It covers a broad spectrum of ages, races, and genders It is frequently disbelieved by GPs, denigrated by journalists, written off by governments, and mistreated by healthcare professionals. It is all too easily overlooked.

Perhaps individual politicians like Jessica Morden, Ian Liddell-Grainger, and Carol Monaghan should be listened to. The evidence increasingly suggests a half-century of psychogenic orthodoxy is indeed turning out to be “the biggest medical scandal of the 21st century”. Besides, if the £5 million PACE trials were in any way falsified, matters of accountability arise, not to mention the possible abuse of public revenues, and compensation for victims, all of which, it might reasonably be argued, ought to be scrutinised by an independent inquiry with powers approaching those of a Royal Commission, and a remit which includes the influence the Science Media Centre has been exerting over much of the press, and the BBC.

Until that happens, Bertrand Russell’s speculation about orthodoxy being the death of intelligence should perhaps give way to Johann von Goethe’s rather more powerful maxim:

“There is no sight more terrible than ignorance in action.”

David J Black is an author, playwright, and journalist who has written for, among others, The Sunday Times Scotland, Scotland on Sunday, and The National. His 2001 investigative book All the First Minister’s Men; The Truth Behind Holyrood exposed the scandal of the procurement and construction of the Scottish Parliament building.