How Junk Science Set A Country's Health And Welfare Policy

This a story about a knight. More than one, actually.

But we’ll start with one: Sir Simon Wessely, one of the most powerful figures in the British medical establishment.

A man whose bad science, ego and ideology have for decades set back research into myalgic encephalomyelitis/chronic fatigue syndrome and treatments for the disease.

This is because for years, Wessely, a psychiatrist by training but with a laundry list of professional positions across British medical society, has been telling people that chronic illnesses, in particular ME/CFS, are all in the mind. Or, to use his favoured term, they are ‘illness beliefs.’

Wessely has said ME, a disease that leaves many bedbound, in terrible pain, and reliant on 24/7 care, is a mental construction. In papers and presentations, he has said the main clinical problem is not that people have a real illness, but that they believe they have a real illness. He has said that concern about viruses is the modern day equivalent of believing in spirits and demons.

“In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same...To the majority of observers, including most professionals, these symptoms are indeed all in the mind.”

In the 80s and 90s, these ideas, often based directly on papers Wessely authored or was involved with, spilled into the mainstream media with headlines about ‘yuppie flu.’ ME was characterised as a fake disease for lazy people who wanted to cheat the benefit system.

His mind made up about illness beliefs, Wessely (who also dismissed Gulf War Syndrome as largely psychological, a disease caused by sarin gas exposure), has for decades pushed cognitive behavioural therapy and graded exercise as treatments for a condition any decent physician understands is a systemic illness that starts at the cellular level of the human body.

And there is very good evidence that in Britain these treatments have been pushed in collaboration with the British government in order to deny state benefit payments to chronically ill people.

In 2011, Wessely along with another psychiatrist, Michael Sharpe, conducted a controversial trial that helped set the UK’s national clinical recommendations for how to treat ME/CFS. This study ended up confirming that the cognitive behavioural and exercise therapy treatments Wessely and Sharpe had pushed for years were, indeed, effective.

This is, to date, the only clinical study funded by the British government department responsible for administering the UK’s benefit payment programme, the Department for Work and Pensions.

Now why would the UK government department responsible for welfare payments spend millions on a study - known as the PACE trial - about chronic illness?

Because they didn’t want to solve the problem. The goal was not to help people. What they wanted was a pretext for kicking people off state payments, forcing them back to work and shrinking the welfare state.

ME/CFS sufferers – people who had been maligned for decades as fakers and shirkers – were a large, and easy, target.

The UK’s policy prior to the trial had already been moving in this direction thanks to a friend of Wessely and Sharpe. Another sir, of course. Sir Mansel Aylward.

The chief medical officer for the department for work and pensions for a decade until 2005, Aylward helped develop the biopsychosocial model of health. This model says negative attitudes rather than physical impairments are why people don’t work. It was used by successive British governments to tighten the criteria for sick people claiming unemployment benefits.

The PACE trial was going to be confirmation that this was the right approach. And Aylward wasn’t going to miss the chance to keep punching down. Funded by his old employers at the department, Aylward sat on the steering committee that supposedly provided ‘independent’ oversight of the trial’s progress.

Here we had a study funded by the government department responsible for welfare payments employing a guy they had previously worked with to put scientific gloss on pre-determined social policies.

So of course Aylward had no interest in anything other than the conclusion the trial arrived at. The policy founder of ‘it’s all in the mind’ was always going to tell the 250,000 people in Britain with ME/CFS that they just needed to get up and walk.

The study itself was criticised as deeply flawed, not just by ME sufferers and campaigners, but by experts from British and American medical schools. More than 100 of them wrote a letter to the medical journal the Lancet in which they decried ‘unacceptable methodological lapses’ and demanded an investigation into the study.

But for years clinical guidelines for treating ME/CFS in the UK and other countries were based on recommendations from the PACE trial. Countless people were harmed trying to defy their biophysical capabilities by following these junk cures.

In the UK in the 90s, children with ME were thrown into swimming pools and instructed to swim by medical professionals fully sold on the idea that ME was psychological. They nearly drowned.

Medical dogmas, when they become institutionally embedded, as is the case for ME/CFS, can lead to truly horrific outcomes.

Thanks however to the persistence and courage of ME/CFS sufferers and campaigners, the public body in the UK that sets guidance on treatments withdrew exercise recommendations last year. The US department of health and social services, which had also been recommending these therapies for years, influenced by Wessely’s research, withdrew their recommendations in 2017.

ME/CFS is of course not in the mind. The disease likely involves dysfunction in the mitochondria, the battery banks underpinning all the cells in our body, regulating our energy levels at every moment of every day.

A physical basis for the disease is also not new science. Researchers in the 1970s rejected the idea ME was psychosomatic and said sufferers had clear biophysical markers, from increased creatine to abnormal lymphocytes in blood to raised protein in cerebrospinal fluid.

Viral infection back then was suspected as the cause.

The continual promotion of discredited junk science and exercise therapy has, however, held back any real progress on treatments for a disease that decimates quality of life.

Just last month a 28-year-old in the Netherlands with ME chose euthanasia rather than bear any more pain.

The need to shine a light on the decades-long attack by the medical, political and media establishment on ME/CFS sufferers has only become more pressing since 2020.

Because the same people are trying their same old tricks on long covid sufferers.

In a 2021 presentation about long covid, Michael Sharpe said the disease was due to fear, anxiety, coping, misinformation, even ‘employment issues.’ His ire was particularly focused on an article by the Guardian journalist George Monbiot in which Monbiot outlines the range of pathologies that can be triggered by covid.

These people really do believe millions can scare themselves into a lifelong chronic illness by reading 500 words about it.

People with long covid are also being referred for CBT and graded exercise therapy, despite the withdrawal of this guidance for ME/CFS sufferers. And we see the same disbelief about the reality of long covid as a disease with an organic basis.

So where is Wessely now, his ideas increasingly discredited? A long-retired embarrassment? That’s not how the British establishment works. In the eyes of the establishment, Wessely is not a failure. Sir Simon is their man. The guy they could count on to pursue science with the right results when it mattered most.

In January this year he was appointed to the board of NHS England, helping manage its nearly £153 billion budget.

As the nature of long covid continues to be contested, and as its burden grows, stories like this are crucial to remind us that health is never apolitical.

Medical professionals are not always, perhaps not even mostly, neutral arbiters of the scientific truth. They have deep and often unwavering social and political ideologies that help determine how they treat (or don’t treat) people.

And these ideologies can harm huge numbers of people.

When these ideologies are essentially cruel, as in the case of Wessely, Sharpe, and Aylward, they will find a sympathetic ear within governments, where cruelty is so often the point of policy, particularly social health policy.

Excuses to turn the screw on ordinary people and shrink the welfare state are eagerly embraced.

Wessely’s appointment to a top position in the NHS is a terrible omen.

No doubt he will make all the right political decisions atop a growing pile of bodies, a crumbling health service and an ever-sicker country.

We continue to live in a world where bad people can be wrong and rewarded because their wrongness leads to the right political outcomes for the ruling class.

I’m sick of it.

We’re all sick of it.

It has to change.

For ME/CFS sufferers.

For those with long covid.

For all of us.

We deserve and we need a humane health system guided by moral principles, not political expediency.