Long Covid is a post-viral illness. People develop it after contracting coronavirus (Covid-19). However, according to former prime minister Boris Johnson, the disease is “bollocks” and doesn’t even exist. The revelations have come out of the ongoing Covid Public Inquiry, and show that the government has blood on its hands for allowing so many people to contract Long Covid.
However, just why Johnson believed this is actually fairly obvious – because people living with myalgic encephalomyelitis (ME) have experienced this dismissal of their disease for decades.
Long Covid is ‘bollocks’, apparently
As the Independent reported, Anthony Metzer KC is the barrister representing the groups Long Covid Kids, Long Covid SOS, and Long Covid Support. During the opening day of the second module of the Covid Inquiry, he presented on behalf of the groups – and made a staggering revelation. Metzer told the public inquiry:
In October 2020, while the Department of Health and Social Care [DHSC] was publishing guidance on Long Covid and called for recognition and support for people with long Covid, then Prime Minister Boris Johnson scrawled in capitals that long Covid was ‘bollocks’.
Mr Johnson has admitted in his witness statement that he didn’t believe Long Covid truly existed, dismissing it as ‘Gulf War Syndrome stuff’.
He summed up by saying:
The UK’s senior most decision makers were dismissing, diminishing and disbelieving the very existence and risk of Long Covid.
However, Long Covid is very real. As the latest Office for National Statistics (ONS) figures estimated, 1.9 million people in the UK had the disease as of 5 March 2023. Of these, 1.3 million (69%) caught coronavirus at least a year before, and 762,000 (41%) at least two years previously.
The pandemic has exacerbated an epidemic of chronic illness. Johnson’s dismissal of the threat of the disease has helped compound a nationwide disaster. So, the reaction from people living with Long Covid and their advocates to Metzer’s revelations has been understandably angry.
‘Unheeded and unanswered’ warnings over Long Covid
Long Covid SOS has been an integral part of fighting for justice for patients. A spokesperson told the Canary:
Deep-rooted scepticism at the very top of government may explain why the millions damaged by Covid-19 have faced huge struggles to have their illness recognised and to get the care they so desperately need.
Letters to government warning of the likely consequences of allowing the SARS-CoV-2 virus to spread unchecked went unheeded and unanswered. Appearances in front of the APPG on Coronavirus and the Health and Social Care Select Committee did not lead to any changes in policy.
The UK Government did not appear to want to take the risk of Long Covid into account when making policy decisions on steps to manage the pandemic. The condition is now… causing the lives of so many to be radically altered, possibly permanently.
However, Johnson’s comments and the government’s intransigence are not surprising. A spokesperson campaign group for Long Covid Advocacy told the Canary:
It is clear from Johnson’s statement that the narrative that certain illnesses are made up is still hitting the highest levels of government. This pernicious, unjust, and factually untrue belief has condemned a tsunami of people to be abandoned to a new devastating reality of disability.
The psychiatric agenda that has pigeon-holed Gulf War syndrome as having psychosomatic factors needs to be firmly kicked out of the park.
Long Covid is real and it is preventable. Yet the evidence from the inquiry shows that it was not thought real enough to influence policy. This is a travesty of social justice.
However, the most damning part of this entire catastrophe is that many people knew that Long Covid was coming – yet the government still failed to act.
An entirely predictable epidemic of chronic illness
Metzer noted during the Covid Inquiry session that:
The possibility of long-term viral illness was well known…
He went on to say that Sir Patrick Vallance, the then-government’s chief scientific advisor, knew this. Metzer continued, saying other doctors pointed to:
lessons from previous corona[virus] pandemics, SARS and MERS, that should have been learned… It was foreseeable that there was going to be long-term sequalae from Covid-19, extrapolated from previous coronavirus pandemics, and previous knowledge of post-viral syndromes… a running thread of concern for this inquiry was that long Covid was foreseeable, so why was it not foreseen?
Sadly, it was foreseen. However, the problem is too many people believe some physical illnesses are psychomatic, like Johnson did. Long Covid’s seriousness was wilfully ignored – as with many post-viral illnesses. A pertinent example of this is ME.
ME and Long Covid
As the Canary previously wrote:
Some people refer to ME as chronic fatigue syndrome (CFS). It is a debilitating and poorly-treated chronic, systemic neuroimmune disease that affects every aspect of the patient’s lives. You can read more about ME symptoms here. The disease has been at the centre of various scandals for decades. These include medical professionals saying it was a psychological illness – that is, that it’s ‘all in people’s heads’.
ME is generally a post-viral illness, like Long Covid. Like that and Gulf War syndrome, because of – yet often also in spite of – the lack of knowledge on just why people get it, many medical professionals have psychologised ME. Parallel to this you have the fact that nearly 50% of people with Long Covid meet the criteria for ME as well. So, Long Covid patients having to endure medical professionals and the state dismissing their illness was sadly predictable.
The Canary wrote in November 2020 that:
Long Covid patients may get a similar whitewashing of their illness as people with ME historically have.
ME Foggy Dog is a social enterprise that works to bring about change for the ME community. Its founder Sally Callow told the Canary:
Since the very start of the pandemic, as an ME campaigner and social entrepreneur, I have been unsuccessfully fighting for the ME community to be included by this government in their Covid-19 planning and for the DHSC to acknowledge that Covid-19 could potentially cause ME/post-viral illness.
Now, it’s become very clear that not only did the government know all this already (Vallance), but they were deliberately choosing to ignore chronic illness as a factor and outcome of the pandemic. Johnson’s scrawled word simply demonstrates the level of ignorance within government. Long Covid is a re-run and re-branding of how ME has always been treated by governments.
A ‘sickeningly low blow’
The real-world consequences of all this are borne out in the lives of people living with post-viral illnesses.
Natalie Rogers is a founding trustee of campaign group Long Covid Support. She told the Canary:
The enduring suffering of nearly two million UK citizens whose lives have been devastated by Long Covid is the inconvenient legacy of the Covid-19 pandemic. Our paused lives sit uncomfortably at odds with the prevailing ‘living with Covid’ narrative. To learn that the uphill struggle for recognition of this debilitating condition was thwarted from the outset at the very highest levels of government is a sickeningly low blow.
Ondine Sherwood is co-founder of Long Covid SOS, and lives with the disease. She told the Canary:
Departmental officials and even at times ministers were receptive, understanding and gave us the impression that something would be done to improve the lives of the many people with Long Covid. We hoped that the Government would at last take the issue seriously. However it became clear that a barrier existed to progress and now we know that scepticism permeated the corridors of power
Ultimately, Johnson’s government has helped ruin the lives of millions of people. All this comes at a time when people with ME have been dying in the UK – or left to die without NHS support.
So, what’s to be done?
Communities need to come together
At the root of much of this is the psychiatric profession’s interference with, and manipulation of, physical illnesses. This practice, which has been going on for decades, will not easily be undone. Many politicians (like Johnson) clearly believe the worst, as do much of the media. Charities are often are flaccid or ineffective. As such, the ball is in the court of patients and their advocates to begin to affect change.
However, this can only be successful when chronically ill people sing from the same hymn sheet. The first step in ending the psychologisation of post-viral illnesses is unity between patient groups. People must start working together to end this prejudice and stigma.
Johnson’s labelling of Long Covid as “bollocks” is exceptionally upsetting for those affected, when their lives have been ruined. The ME community are acutely aware of this – as they’ve lived it for decades. Without working together, both the Long Covid and ME communities will be consigned to further years of neglect, mistreatment, and abuse.
Featured image via Bloomberg – YouTube
By Steve Topple
This post was originally published on Canary.
