It first appeared in late spring 2020 – the hashtag
For her, it was her third month of illness. “At the end of 2019, I went to Lombardy,” she says. In the area that shortly afterwards became one of the largest corona epicenters outside of China. The world was shocked by the horrific images of lines of hearses.
Shortly before the outbreak of the pandemic, Elisa Perego was living in Vienna and was studying at the Austrian Academy of Sciences on a scholarship, which was due to expire soon. She also needed medical tests. “Since I was a child, I have suffered from chronic illnesses that have gotten worse at times,” says the scientist.
Then the virus came. She became infected long before a vaccine was developed. Perego fought the disease. Not only her lungs, but also other organ systems were affected. But there was hardly any help back then. The hospitals were too overwhelmed in this first wave of the pandemic.
She survived the illness, but never recovered. In particular, her lungs, her heart and her brain showed symptoms and signs of failure long after the infection. For example, shortness of breath, chest pain and changes in your blood vessels. “I even developed arthritis,” she says, an inflammatory joint disease.
Like many others, she used Twitter as a mouthpiece to draw attention to the consequences of the infection. Your hastag
After the SARS-CoV-2 virus began its devastating journey around the world, science and medicine initially focused primarily on people with acute cases. However, the fact that around ten percent of those infected with the first Corona variants developed long-lasting or new symptoms only came to public attention because patients loudly drew attention to their suffering.
The February 2020 WHO-China report said: “The median time from onset to clinical recovery is approximately two weeks for mild cases and three to six weeks for patients with severe or critical illness.”
But as early as March, patients began reporting on social media that they had experienced something different. There you read about inexplicable pain, organ damage, massive exhaustion or a “brain fog” that limited your ability to think and remember. So the world learned that people with less severe cases didn’t have to fear death, but sometimes they had to face a seemingly endless hell went.
Together with researchers such as Felicity Callard from the University of Glasgow, Perego has conducted a study to trace the effect this movement of Long Covid patients has had on science and politics. In the paper “How and why patients made Long Covid”, the authors write how in April 2020 the first newspapers became aware of the reports from those affected and published them.
On May 5, 2020, infectiologist Paul Garner described in a blog post how he experienced his “rollercoaster ride of illness, extreme emotions and complete exhaustion” that had already lasted seven weeks at that point. His interview in the British Guardian shortly afterwards was read more than a million times in just a few weeks.
Less than two weeks later, those affected began to use Perego’s hashtag
Scientists and doctors, in turn, were able to communicate with patients in real time via the online platforms. Information about disease progression did not trickle into the scientific community, it could be found in thousands directly in the Twitter feed. This exchange quickly led to new research projects.
In May 2020, a patient-led research team published an analysis of ongoing Covid-19 symptoms and listed more than 50 of them.
King’s College London also collected data on Covid symptoms via an app. In June, the study reported that “one in 10 people still have symptoms after three weeks, and some even suffer for months.” The hashtag
Akiko Iwasaki, professor of immunobiology at the Yale School of Medicine, came across a survey on Twitter by the “Survivor Corps,” a support group for those affected by Long Covid. 40 percent of those surveyed said that their symptoms had improved after the first dose of vaccine. The survey prompted Iwasaki to study the impact of the vaccine on long Covid patients. Writing in Yale’s university newspaper in 2022, she said: “Twitter has been critical to our ability to quickly learn about Long Covid, particularly from the patient perspective.” Through tweets from patients, she learned how the vaccination affects Long Covid.
The World Health Organization (WHO) has also acknowledged the hashtag. In August 2020, Director-General Tedros Adhanom Ghebreyesus met with Covid patient groups: “We have received your SOS,” he said. “We have heard loud and clear that Long Covid needs recognition, guidelines, research and continuous input and stories from patients.” Perego was invited to this meeting as Italy’s representative.
In September 2020, the “International Classification of Diseases” ICD-10 – a kind of official list of all recognized diagnoses – finally defined Long COVID as “post-COVID-19”. It was a clear signal to global health organizations to recognize and provide medical care to people with Long Covid. In just a few months, patients’ experiences had reached official clinical and policy channels through various media.
“Long Covid,” Perego says today, “can lay claim to being the first disease that arose as a result of patients finding each other on Twitter.”
One might wonder where we would be today if so many people hadn’t made their voices heard so early on in the same place where scientists and doctors can be found: in the social networks.
“I think the consequences of a SARS-CoV-2 infection would have been recognized more slowly and perhaps less accurate,” says Perego. “Covid and Long COVID are now among the most studied diseases in medical history.” And yet there is still a lot to be done; after all, no one knows exactly how the suffering arises. There is not a single treatment that is even remotely curative; those affected often wait months for appointments with specialists. Despite all the evidence, some people are not taken seriously when they seek medical help. That’s also why Perego says: “I’m too sick to work properly again. But I’m trying to continue publishing studies on Long Covid to further advance recognition of the disease.”
The term “Long Covid”, chosen by patients themselves, is now used in the scientific literature as well as by policy makers, health professionals, the media and key health bodies.