David J Black

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.”

Simon Wessely threatened to sue and The Scotsman sacked her, though her last point gained relevance when Professor Peter Behan – who’d damned CBT as “talk the talk nonsense” – lost funding in 2005 after his team mapped all 33,000 genes in ME/CFS sufferers, comparing them with those of healthy people. This aborted study was hailed by ME Research UK as “the discovery of a clinical ‘signature’ for ME/CFS (which) would transform this situation at a single sharp stroke”.

Dr Wessely has stated “ME is simply a belief, the belief that one has an illness called ME”. He has equated it with ‘neurasthenia’, which American pioneering neurologist Silas Weir Mitchell made his specialisation during the US Civil War. For writer Charlotte Perkins Gillman, Mitchell’s ‘rest cure’ involved being locked up, treated with electrotherapy, and fed on a diet of milk with no books or visitors. Men like his cousin Owen Wistar, by contrast, underwent a frontier cure, with a spot of fishing, hunting, and bonding around the campfire.

This misogyny persisted. In 1970 two psychiatrists attributed a 1955 ME/CFS epidemic in London to mass-hysteria among female nurses, contradicting a US Health Service report into a 1934 Los Angeles outbreak which had concluded that “It would be manifestly erroneous to consider as hysteria the emotional instability associated with this illness.” A frequent criticism of the biopsychosocial model was that it suggested patients might be falsifying symptoms, an assertion fraught with ethical uncertainty. Some have seen the error of their ways. BBC ‘Radio Doctor’ Phil Hammond (as ‘MD’) has confessed in Private Eye that his “greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes (‘yuppie flu’). Both beliefs are entirely wrong and have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring sleight that it’s ‘all in the mind’ or due to ‘faulty beliefs’.”

Views were also changing in America, where books such as Hillary Johnson’s 1996 Osler’s Web, Laura Hillenbrand’s 2003 New Yorker article A Sudden Illness, and the award-winning 2017 documentary Unrest by film maker Jennifer Brea had initiated the sort of public debate which simply didn’t exist in the UK, where an unsympathetic press, guided by lobby group the Science Media Centre (of which Simon Wessely had been a founding trustee) overwhelmingly supported the biopsychosocial faction.

Official attitudes in the UK were particularly perverse. The National Institute for Clinical and Health Excellence (NICE) recommended against the use of antivirals, while researchers at California’s Stanford University found certain antivirals offered a possible treatment route. In addition, a Cornell study identified inflammatory microbial markers in patients with ME/CFS. By 2015, after reviewing 9,112 published papers, the US Institute of Medicine released a report stating that ME/CFS was a physiological, rather than a psychological, illness. American politicians, too, were becoming concerned. Representative Jamie Raskin’s 2020 Congressional bill HR 7057, the Understanding COVID-19 Subsets and ME/CFS Act stated:

“Patients with ME/CFS - are often given harmful treatment recommendations exposing them to needless suffering – physicians are not sufficiently educated on the proper diagnosis of COVID–19 subsets, ME/CFS, or [its] current treatments. This leads to excess health care costs, errors in treatments, and harm.”

Following a 2015 ruling of US regulator the CDC, both CBT and GET would be downgraded as ME/CFS treatments in November 2020 by NICE. This seeming reversal for The Wessely School had little effect. Theresa May appointed Sir Simon as chairman of a 2017 review of the 1983 Mental Health Act, whereupon 65 disability organisations and medical professionals urged that his appointment be reconsidered on the grounds that he was ‘resoundingly unfit’ since “his unsubstantiated claim that ME is driven by ‘false illness beliefs’ has led to patients being labelled as hypochondriacs, treated with contempt by some in the medical profession and stigmatised by society. - Graded Exercise Therapy caused deterioration in function for nearly 50% of ME patients surveyed, yet he dismisses their evidence as unreliable and labels all critics of this work as irrational and extremist.”

Such pleas presented no obstacle to Sir Simon’s further preferment in 2023, when he was appointed to the board of NHS England, establishing him as one of Britain’s most powerful doctors. His biopsychosocial model was nonetheless under scrutiny. The revised NICE guidelines had overturned its 2007 endorsement of CBT and GET, a volte-face which enraged Wessely school adherents, three of whom resigned from the NICE Guideline Development Group in protest; Even so, their influence prevailed as around 70 per cent of practitioners simply disregarded the guidelines. There was also an outcry after the findings of the biopsychosocial-slanted 2011 ‘PACE’ report were shown to have been distorted and were even, in the view of some critics, intentionally fraudulent.

The factional war of attrition continues, although the notion that ME/CFS and long Covid victims are workshy hypochondriacs is irrevocably retreating as reality and lived experience intrudes. In May former Chancellor Sir Sajid Javid, whose cousin’s daughter has severe ME/CFS, led a House of Commons debate on the subject. His cousin was present in the public gallery, as was Times senior reporter Sean O’Neill, whose daughter Maeve had struggled in vain to overcome her reportedly avoidable death in 2021, at the tragically young age of 27. The coroner’s inquest into the latter finally commenced in July this year. Another journalist with an interest in the matter is Esther Rantzen, who has written movingly of her daughter Emily’s severe ME/CFS.

There was much genuine cross party sympathy – few MPs, after all, can now be unaware of constituents whose lives have been wrecked by ME/CFS and Long Covid. Some, like Yvette Cooper, have even suffered from it, though those who hoped this might promote a more empathetic line with ME victims would be cruelly disappointed when her Welfare Reform Bill extended the use of benefit sanctions to force the disabled – including ME victims – back to work.

How are we meant to measure the outcome of the debate of May the 1st? Will it simply turn out to be a repeat of the 2018 debate, which led nowhere. There is, of course, the additional promise of a ‘delivery plan’, but this is unlikely to ever be delivered. More heartfelt, mollifying words are pointless, but that is as much as we are likely to get. After all, six years have passed since the manifestly distorted ‘PACE trial’ into ME/CFS was described in the UK parliament as ‘one of the biggest medical scandals of the 21st century’, and nothing was done.

We now have the cumulative challenges of ME/CFS and Long Covid acting in tandem, while DWP minister Mel Stride conflated the current government policy of ‘helping’ (in effect, coercing) the sick and disabled back into work, while at the same time cracking down on “welfare scroungers”. A little fact for Mr Stride: government statistics indicate that benefit fraud in 2022 amounted to four per cent of welfare expenditure – i.e 96 per cent of claims are honest – but it is important to recognise that organised crime is responsible for much of this fraud, as in the case of a Bulgarian gang recently found guilty of creating false Universal Credit claims worth almost £54 million. It is certainly not the unjustly accused “malingerers” of that shameful 2001 Woodstock conference who are the criminals.

We now live in a ‘post Horizon’ era in which state sponsored scandals and squalid cover-ups should simply not be tolerated. Thanks to the exemplary Infected Blood Inquiry, prompted by the initial study of Sir Robert Francis KC, and culminating in the compensation recommendations of His Honour Sir Brian Langstaff after a scrupulous process of open investigation, there is now a working template which can be followed. After decades of vacillation and inaction the time has come to take a radically different approach, and the ME/CFS war of attrition must be brought to an end, without fear or favour, and regardless of who might be embarrassed by the long overdue need for transparency and accountability. The government, with the sort of cross party support which was evident in the recent debate, should set up a thorough, impartial, and comprehensive statutory public inquiry into every aspect of the ME/CFS and Long Covid scandal.

The following statement, written by ME/CFS sufferer Merryn Crofts, who contracted the illness after a bout of glandular fever at the age of 15, should be lodged as preliminary evidence.

“Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bed-bound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

Merryn Croft died on the 23rd of May 2017, just days after her 21st birthday. If that heartbreaking posthumous testimonial doesn’t justify a full statutory public inquiry, it’s hard to know what does.