David J Black: Is anyone listening? Does anyone care?

[Sly Saint]

On the 1st of May Sir Sajid Javid initiated a parliamentary debate on the UK’s abysmal record on the care and treatment of ME/CFS patients, whose ranks are now much augmented by Long Covid sufferers. There was an almost identical debate held in February 2018 in which the member for Glasgow North West, Carol Monaghan MP, damned a grossly manipulated research trial (PACE) into ME/CFS as “one of the biggest medical scandals of the 21st century”.

In May 2022, as Secretary of State for Health, then plain Mr Javid set out a “vision for a new approach to ME/CFS” when he co-chaired a round table with the chief scientific adviser, Professor Lucy Chappell, and several expert advisers. Much was made of the intention to come up with an all-party ‘delivery plan’ for England, with positive implications for the devolved nations. Unfortunately this aspiration was abandoned despite an airy hope that the delivery plan might be ready by autumn 2024, when a general election was widely anticipated.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), with its post-pandemic variant, long Covid, affects upwards of two million UK citizens, and perhaps 55-65 million people worldwide, including over 4.3 million Americans. Around 25 per cent of its victims can be hypersensitive to light and noise, confused by brain fog, and wracked by pain. That much most physicians and researchers agree on, though casualty numbers vary.

The ten-year-old estimate that around 250,000 people in Britain are debilitated by ME/CFS was revised upwards in Sir Sajid’s debate to 1.3 million, and then upwards again to two million by the Medical Research Council Human Genetic Unit. This presumably includes post-viral victims of Long Covid, the two conditions being one and the same according Dr Avindra Nath of the US National Institute of Neurological Disorders and Stroke, among others.

The long standing curse of this particular field of study is that opinions don’t simply vary. Like an unstoppable force meeting an immovable object, they collide catastrophically. A ‘biopsychosocial’ thesis holds that ME/CFS is essentially psychosomatic – that is, all in the victim’s head. The biomedical view, by contrast, focusses on its organic origins. While patients suffer, and indeed die, the two opposed factions battle for supremacy, and no-one wins. UK governments are attracted to the first option, believing it will be less costly for HM Treasury.

In one corner, the ‘Wessely School’, led by former Royal College of Psychiatrists President Simon Wessely, has long promoted Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for sufferers’ alleged “maladaptive beliefs” and “unhelpful cognitions”. He was aided in this mission by his wife Dame Clare Gerrada as president of the Royal College of General Practitioners and senior adviser to the Department of Health, who continued to promote GET even after the UK’s National Institute for Clinical and Health Excellence (NICE) had struck it from its guidelines.

In the other corner are the critics who maintain that this approach ignores such triggers as viral and bacterial infection, or environmental toxins which can compromise the central nervous system and cross the blood-brain barrier. Unfortunately, where Sir Simon and Lady Wessely are feted by the government, the media, and the BBC (he has been a guest on Desert Island Discs not once, but twice!) their biomedical critics tend to be either given short shrift, are studiously disregarded, or even persecuted, as in the case of biopsychosocial sceptic, Dr Sarah Myhill, who has been referred to the General Medical Council between 30 and 40 times, on the basis of scant evidence.

A propaganda red-letter-day for the biopsychosocial cause was the 2001 ‘Malingering and Illness Deception’ conference funded by the Department of Work and Pensions (DWP) and US healthcare insurance corporation Unum Provident. The 39 delegates at the Woodstock, Oxford, conference included DWP chief medical adviser Sir Mansel Aylward, head of Cardiff University’s Unum Provident Centre for Psychosocial Research, and Benefits Agency chief investigator Richard Kitchen. Its published proceedings prompted one biopsychosocial reviewer to allude to “evidence that many of our patients may be deceiving us, and that much of this deception may be conscious. We are introduced to the debate as to whether or not malingering should be identified as a psychiatric disorder, a disorder of free will, or simple criminal behaviour”.

Simon Wessely’s promotion of the biopsychosocial model has long been controversial. Law Professor Ziauddin Sardar asked in 1999 how a man 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?” In 2003 haematologist Margaret Cook, former wife of UK Foreign Secretary Robin Cook, delivered a searing fusillade in her Scotsman column:

“ME sufferers have found an enemy in Wessely – [he] has been central to the psychiatric perspective that ME does not exist at all, and that the related ‘Chronic Fatigue Syndrome’ is a mental condition best managed by a psychiatric therapeutic approach – such is his influence that no state funding is forthcoming to support any research other than his own.”

David J Black: Is anyone listening? Does anyone care? | Scottish Legal News