Long Covid protest Westminster

This article is reproduced with permission from The Canary, a UK publication, and written by Steve Topple.

Friday 15 March was global Long Covid Awareness Day. In London, a campaign group brought together other activists, patients, and advocates to raise awareness of this cruel, debilitating disease.

However, in tandem with this much of the corporate media chose not to support chronically ill and disabled people. Instead, they chose to promote a piece of junk science, intentionally published on Long Covid Awareness Day with the aim of gaslighting patients and minimising the illness.

Long Covid is a post-infectious, multi-system disease that has some clinical and pathological overlaps with myalgic encephalomyelitis (ME, sometimes known as chronic fatigue syndrome, CFS). Charity Long Covid Support wrote that:

After Covid-19, many people make a full recovery within a month. For others, symptoms can last longer. Symptoms lasting 4 weeks or more after suspected or known Covid-19 may be Long Covid. You can have Long Covid after a mild or even symptom-free initial illness… People of all ages and previous levels of health and fitness are at risk of experiencing the life-changing effects of Long Covid – including children and adolescents.

The Office for National Statistics (ONS) suggested that as of March 2023, at least 1.9 million people reported living with long Covid. This figure is likely inaccurate now, because that was the last data the ONS collected. Of those living with long Covid in March 2023, 1.3 million of them had been infected with coronavirus at least a year earlier.

So, with all that in mind, 15 March saw action for people living with long Covid across the world – and specifically, in London.

Long Covid Awareness in London

Campaign group Not Recovered UK had been previously putting up patient crowd-funded billboards around the UK. For Long Covid Awareness Day, the group took things a step further. It hired a Digivan to go around Westminster. This displayed images of people living with long Covid, while broadcasting a voiceover explaining the dire situation the government leaves these people in. (For full details of the day including photographs, please see the original article)

Campaign groups the Chronic CollaborationLong Covid SupportLong Covid Advocacy, and Long Covid Patient Action Group UK sent representatives out on the day. Then, volunteers from chronic illness communities also came out to help hand out information leaflets.

Chronically ill people who were too unwell to attend in person got involved on social media. #LongCovidAwarenessDay was therefore trending at number six in the UK as a result of their efforts.

Overall, people deemed the day a success. Trustee of Long Covid Support Jo Dainow told the Canary:

A truly inspiring day with so many incredible Long Covid advocates. Our community’s strength is in its ability to come together to raise awareness about the devastation Long Covid causes.

Rupert Higham from Long Covid Advocacy told the Canary:

This year’s Long Covid awareness day sent the most powerful message yet about the ongoing, devastating impact on people’s lives.

“Not different from the flu”

However, despite all of this, also on Long Covid Awareness Day some alleged scientists were determined to gaslight patients, undermine scientific research, and promote more junk science – with much of the corporate media dutifully lapping it up.

A new ‘study’ from Queensland Health in Australia has claimed that long Covid is no different from other post-viral illnesses. As the Guardian reported:

The results of the study, which [Dr John] Gerrard will present next month at the European Congress of Clinical Microbiology and Infectious Diseases in Barcelona, found no evidence that those who had Covid-19 were more likely to have functional limitations a year on compared with those who did not have Covid-19 (3.0% v 4.1%).

The 3% of the study participants who had ongoing impairments after Covid-19 infection was similar to the 3.4% with ongoing impairments after influenza.

Of course, the study was essentially nonsense. The only thing scientific the authors did was the initial PCR test. The ‘results’ they extrapolated were from a text message patient questionnaire. However, if you look at Gerrard’s comments, you can see what him and the authors intended the thrust of the study to be. He said:

We believe it is time to stop using terms like ‘long Covid’. They wrongly imply there is something unique and exceptional about longer-term symptoms associated with this virus. This terminology can cause unnecessary fear, and in some cases, hypervigilance to longer symptoms that can impede recovery.

That is, long Covid is partly psychosomatic. The patient’s own ‘false illness beliefs‘ are making their symptoms worse. Ergo, think yourself better. If that sounds familiar, it is – because they’re the same preposterous psychiatric tropes that certain medical professionals have been determined to put onto ME patients for decades. It’s just now, they’re turning their attention to long Covid.

Political machinations on Long Covid Awareness Day

The fact that the authors of this junk science intentionally put the embargo on it as 15 March cannot be overstated. It was clearly a political decision to try and discredit and gaslight long Covid patients, given it was an official Australian government body which conducted the study.

Gerrard himself was a proponent of the failed ‘herd immunity’ strategy. Moreover, the paper is only an abstract; that is, it has not even been peer reviewed. Yet countless corporate media outlets chose to publish articles on it, anyway.

Many ran with headlines like ‘there is no such thing as long Covid‘ and ‘long Covid doesn’t exist‘. The Guardian (a serial offender when it comes to throwing people with ME under the psychosomatic bus) had to change its own headline, after its original one was misleading.

Of course, none of this is what the paper said – yet the corporate media drew those conclusions. At best, the researchers would have known this would have happened. And at worst, it was their intention from the outset. The latter is highly probable, given the embargo.

The real-world effects of this inflammatory and malicious agenda can be horrific.

In the real world, junk science has consequences.

Members of the public repeatedly confronted volunteers on the ground in London on Long Covid Awareness Day. They were telling them the illness ‘wasn’t real’. Some even became angry or aggressive.

Nicola Jeffery is the founder of the Chronic Collaboration. She told the Canary:

Handing out leaflets alongside the Digivan was very successful. Unfortunately, we experienced several members of the public become abusive – telling us long Covid ‘doesn’t exist’.

At worst, the psychologisation of ME is still having deadly real-world effects today. As the Canary has documented, the NHS is still neglecting and abusing severe ME patients to this day – with one, Millie, currently at severe risk in hospital.

All this is, of course, why Long Covid Awareness Day was so important.

“People with Long Covid aren’t going anywhere, and won’t be ignored.” Alex Sprackland, Not Recovered UK

Long Covid Awareness Day showed the best of chronic illness and disabled communities: people co-working both in person and online to raise awareness.

It also showed the state that governments and medical profession have left them in: that it’s down to chronically ill people to fund their own campaigns and raise awareness themselves.

The day also showed that much of the corporate media cannot be trusted NOT to punch down onto some of the sickest people in society.

However, it also showed when people living with long Covid and other chronic illnesses come together and show collective solidarity, then anything is possible.

However, it also showed when people living with long Covid and other chronic illnesses come together and show collective solidarity, then anything is possible.

Sprackland is right. People with long Covid aren’t going anywhere – and they certainly won’t be ignored.