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: a devastating 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 Day 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:
Campaign groups the Chronic Collaboration, Long Covid Support, Long 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.
The day was targeting areas of government that could make a difference to the lives of people living with long Covid. It started at the Department for Work and Pensions (DWP) where campaigners also were:
They then moved on to the Department of Health and Social Care (DHSC):
A lot of time was spent around parliament – with Big Ben featuring prominently:
Then the groups and the Digivan made their way to Downing Street:
People finished at the DWP again:
‘Truly inspiring’ Long Covid Awareness Day
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.
Sam Rhodehamel lives with long Covid and came out to volunteer. He told the Canary:
Coming together with so many like minded people to advocate for awareness of this invisible public health crisis felt so empowering. It was the encouragement I needed in our ongoing battle for a cure.
However, it’s of little wonder that so many people living with long Covid could not attend Not Recovered UK’s day of action in person.
Horrendous symptoms
The physical symptoms of long Covid can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, and congestive heart failure. Research shows people with long Covid experience a lower quality of life than most other serious long-term conditions.
Long Covid can be difficult to diagnose, and some people might not realise their symptoms could be linked to prior Covid-19 infection.
- There can be more than 200 symptoms.
- Symptoms can affect anywhere in the body.
- Symptoms can come and go, and new ones can appear weeks or months later.
Symptoms include post-exertional malaise (PEM), extreme and debilitating fatigue, cardiopulmonary dysfunction, gastrological dysfunction, cognitive impairment, and pain. Some people also develop secondary conditions like postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia.
People living with long Covid are sometimes severely disabled. They can often be housebound or bedbound, and wheelchair users. Yet, as the National Institute for Clinical Excellence (NICE) reports, there is currently no effective treatment for long Covid.
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.
‘Not different from the flu’
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:
Yesterday, the Chronic Collaboration was extremely proud to stand with long Covid patients and allies, and support Long Covid Awareness Day. There are parallels between ME and long Covid, and a real lack of understanding of post-viral illnesses. 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’.
As somebody diagnosed with ME, and who understands the history of the psychologisation of the condition, it is extremely concerning to see this same history repeating itself with long Covid.
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 living with long Covid “aren’t going anywhere” and “won’t be ignored”.
Overall, co-founder of Not Recovered UK Alex Sprackland told the Canary:
I am really pleased with the how the campaign went today.
We’re always amazed by the resilience of long Covid patients to come out against the odds and advocate. I hope that the campaign has helped to raise awareness for the sufferers of long Covid, so we can finally get some recognition and put pressure on the government to properly fund and find treatments for the disease.
We aren’t going anywhere and we won’t be ignored.
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.
Sprackland is right. People with long Covid aren’t going anywhere – and they certainly won’t be ignored.
Featured image and additional images via the Canary
