Long COVID denialism puts you on the wrong side of history
Imagine, just for a moment, that HIV/AIDS was spoken about in the media with the same denialist language that is often used to describe long COVID.
You’d hear nonsense like this: “HIV is not the cause of AIDS because it fails to meet the postulates of Koch and Henle, as well as six cardinal rules of virology.”
And absurd ideas like: “There is nothing particularly new about AIDS, which, properly speaking, is not a disease at all, but rather a syndrome, arbitrarily defined as a long list of ancient diseases that are called AIDS only when HIV is present.”
The first quote is taken from a 1988 Science paper written by molecular biologist Peter Duesberg. The second quote is from a 1992 Los Angeles Times article discussing Duesberg’s radical ideas.
The circumstances around the initial spread of HIV were very different to COVID-19, but the denialist language is spookily similar.
In March, at least 11 media outlets reported on an unpublished, observational study that compared the rates of long-term illness in people who contracted COVID-19 and people infected with other respiratory diseases.
Despite many long COVID specialists disagreeing with the conclusions drawn by lead researcher and Queensland’s chief health officer John Gerrard, the news headlines denied or questioned the existence of long covid, a debilitating condition that affects millions of people worldwide.
Here were the headlines:
‘Long COVID’ doesn’t exist as we know it, according to new research — The Sydney Morning Herald
Queensland’s top doctor wants you to stop saying ‘long COVID’ following new study — 9News
Time to stop using term ‘long Covid’ as symptoms no worse than those after flu, Queensland’s chief health officer says — The Guardian
‘Long Covid’ should be scrapped over fears its ‘probably harmful’: QLD chief health officer — news.com
Queensland’s Chief Health Officer says it’s time to stop using the term ‘long COVID’ — ABC News
Study ‘debunks’ long COVID: Queensland research suggests symptoms are not unique — Channel 7
Why this health official says it’s time to stop using ‘long COVID’ — SBS News
Time to stop using ‘long COVID’ — Qld health chief — The Canberra Times
There is no such thing as long Covid, say health officials — The Telegraph
Stop calling it ‘Long Covid’, doctors told… because illness is ‘indistinguishable’ for other post-viral syndromes — Daily Mail Australia
Is it time to lose the term Long COVID? — Cosmos
As someone who has long COVID and cares for someone who has (at times) terrifyingly severe long COVID, I was personally taken aback by the headlines. And I wasn’t alone. Many people with long COVID found this coverage deeply offensive.
The more I think about it, the worse it seems.
However well-intentioned or balanced the reporting, the use of denialist language in headlines to describe long COVID at this point in the COVID-19 pandemic is very hard to justify.
It ignores an entire body of literature. It rejects the lived experience of people with long COVID. And it thwarts collective action.
Queensland’s Acting Chief Health Officer has since apologised for the distress caused by the research, telling 9News that this was not their intention.
I contacted the Queensland government health department for this story and received no response.
Science keeps an open mind
According to philosopher-of-science Karl Popper, a scientific theory can only be falsified, never proven. Falsifying the statement ‘long COVID is the same as other post-viral illness’ is easy to do from a biological standpoint.
We know, with 100% certainty, that long COVID stems from SARS-CoV-2 infection and that there were no known cases of SARS-CoV-2 infection in humans before 2019. This means we are looking at something new and cannot assume it behaves the same way as other respiratory viruses.
We have barely scratched the surface when it comes to researching the differences between long COVID and other post-viral illnesses. Historically, research into post-viral conditions has been pitifully underfunded. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) comes dead last on an analysis of the United States’ funding allocations, despite its significant burden of disease.
“Biology is an experimental science, and new biological phenomena are continually being discovered… Thus, one cannot conclude that HIV-1 does or does not cause AIDS from Duesberg’s ‘cardinal rules’ of virology…,” colleagues wrote in rebuttal of Duesberg’s ideas at the time.
New information could falsify Duesberg’s theory, which is another way of saying he could be wrong.
Look at which way the wind is blowing
There’s another school of thought in the philosophy of science, introduced by Thomas Kuhn, which suggests that two scientific paradigms are not possible to compare.
Progress happens in giant leaps called scientific revolutions when one worldview suddenly triumphs over another. An example of this is when we stopped believing the Sun revolves around the Earth and started believing that the Earth revolves around the Sun.
To decide whether to jump ship from one paradigm to another, scientists evaluate the weight of the evidence on both sides based on a set of shared values, Kuhn argues. For instance, one theory might be more satisfying or more elegant than another and explain more variables.
The weight of the evidence right now points towards long COVID being a condition in its own right.
Long COVID was officially named ‘post-COVID-19 condition’ by the World Health Organization in 2021.
Long COVID affects at least 10% of people who had a severe SARS-CoV-2 infection. More than 200 symptoms have been associated with long COVID.
We know, through prospective clinical trials and systematic reviews, that COVID-19 can cause long-lasting damage to multiple organs, including the brain, heart, lungs, kidneys, liver, pancreas and spleen.
Many people with long COVID have a lower quality of life than some people with advanced cancers.
Regardless of which philosophy of science you prefer (Popper or Kuhn), denying the existence of long COVID — even as waves of information challenge this perspective — puts you on the wrong side of history.
What is a disease anyway?
The naming of diseases and medical conditions is as much a science as it is a social and political activity.
In 1850s America, a physician called Samuel Cartwright invented the term ‘drapetomania’ to describe the “disease of the mind” that made slaves run away. His views were published in the New Orleans Medical and Surgical Journal.
Debates constantly rage around the level of hyperglycaemia required to be diagnosed with prediabetes, or how high your blood pressure needs to be before you are classed as having pre-hypertension.
A lot of money can be made when disease categories are widened. Conflicts of interest often cloud the decision-making process.
Medical conditions that affect people who are marginalised or stigmatised in society are less likely to be recognised. Is obesity a disease? The World Health Organization and the US Centres for Disease Control and Prevention say ‘yes’. But not everyone agrees.
There is no medical consensus as to what counts as a disease, condition, syndrome, or illness.
AIDS and ME/CFS are syndromes, which are a collection of signs and symptoms that are correlated with each other and often associated with a disease.
Long COVID is being classed as a ‘condition’, which tends to be used as an umbrella category for all types of illness.
If your aim is to be fair and independent as to where you draw the line, it’s useful to put two medical conditions side-by-side and see how you are treating both.
Let’s compare long COVID with breast cancer.
Breast cancer is biologically complex. Lots of genetic mutations are involved. Not all of these are unique to breast cancer.
There are high-level academic debates around whether we should use the term ‘breast cancer’ (and other organ-of-origin names like ‘lung cancer’) when cancers in different organs share the same genetic mutations, cause similar metastatic disease and can be treated with the same targeted drugs.
And yet, we still default to using the term ‘breast cancer’ because it is logical, helpful, convenient, and we want to support people with this condition.
We don’t see a lot of news articles calling for people to ditch this term because cancers can be biologically similar.
That makes me think we are treating breast cancer and long COVID differently as a society. And science can’t explain why. This is to do with politics.
Who benefits most from crushing the long COVID label?
The term ‘long COVID’ has been used as a rallying point for legal action and battles for disability entitlements by people with long COVID worldwide.
The groups that stand to lose the most if long COVID continues to be recognised as a condition are those that will foot the bill: insurers and government.
Long COVID is very expensive. The annual economic cost of long COVID has been estimated to be around $5.7 billion in Australia, and £1.5 billion in the United Kingdom. It has also been estimated that long COVID will ultimately cost the United States $3.7 trillion.
If there’s widespread awareness that COVID-19 has caused a mass-disabling event, maybe people will want something done about that.
Dr Blair Williams, a politics lecturer at Monash University, argues that the downplaying of long COVID is part of an effort to manufacture the public’s consent to ‘living with COVID’.
“Their narrative is that COVID is just like a cold, and we need to ‘return to normal’ and the threat of long COVID has been an impediment to this,” she says.
“Without having the language to be able to describe what’s happening, then you simply can’t. It erases those who’re suffering while hiding reality from those who could be at risk in the future — which, really, is all of us. We’re all susceptible to COVID and long COVID.”
Language is power
A call to abolish the term ‘long COVID’ does nothing to raise awareness of the 65 million people living with long COVID globally. And yet the Chief Health Officer’s team, and the national press, chose to publicise this research on 15 March, which is International Long COVID Awareness Day.
It’s no wonder that people with long COVID are experiencing this media coverage as a slap in the face.
Miquette Abercrombie — who has gone from being a runner to using a wheelchair due to long COVID — says she felt “stunned and in shock” after reading about this study.
“The first words I said were: ‘he has just taken away our identity’ and couldn’t stop crying,” she says.
I asked the Australian Long COVID Community Facebook group — which has more than 4,800 members — whether people found this coverage offensive, and they did.
These were some of the words that around 35 Australians with long COVID used to describe the media coverage and how it made them feel: “Gaslighted, very triggering, patronising, unhelpful, minimising the truth, misleading, incredibly distressing, this just feels like an erasure, absolutely offensive, laughable, pointless, minimises suffering, very wrong, dangerous and likely to encourage denialist attitudes, poorly constructed, awful, scary, clickbait, two-dimensional, appalling, wild, sensationalist, flawed, undermining, hugely insulting.”
When you seek to eliminate group language, what you are really doing — intentionally or not — is undercutting a whole movement before it’s even started.
If the history of HIV/AIDS is anything to go by, ‘long COVID’ might turn out to be the most accurate term we will ever have for this condition.
Imagine if people with HIV/AIDS were never allowed to mobilise under one name. What kind of world would that be?
