In early 2020, Ondine Sherwood got COVID and never recovered. In her search to understand if there were others like her she came across an article in the New York Times where they interviewed the founder of the Body Politic COVID-19 support group, Fiona Lowenstein. She applied to join the support group and saw that many, even young previously fit people, were asking the same questions she had: why weren’t they recovering? 

At the time, Ondine had heard that there were people with – what is now known as – Long Covid that were threatening to take the government to court. This pushed her to think that something needed to be done in the UK too. “People were being completely ignored. They were ill with the initial infection. They were stuck at home and weren’t being included in any sort of care programs. People weren’t part of any research either”, highlights Ondine. “The focus was, understandably, on the people in hospitals and those that were dying. But what about all the rest? What about the people who weren’t recovering? It wasn’t being mentioned.” Her journey with Long Covid had started. 

The first time it was mentioned in the UK press was in an article where it was mentioned that some people weren’t recovering from COVID but this was not really acknowledged. And so Ondine and others such as her Long Covid SOS co-founder at that time, Sandra Edwards, got together to see what they could do. Inspired by awareness videos coming out of France and Spain, they decided to make a film and to write an open letter to the UK  government explaining what was going on because they didn’t appear to know or understand. Information was gathered from the various support groups at the time and their short film called ‘Message in a Bottle’ was created in June 2020. Translated into several languages, it was an SOS sent out to the world. The film is still being viewed and used in international Long Covid conferences and webinars, on TV, in the radio, and was highlighted by Dr Tedros Adhanom Ghebreyesus, Director General of the WHO, during Long Covid SOS’ historic meeting with the WHO in August 2020.

Since the very beginning of the pandemic, Long Covid has been a difficult statistic to count. This has made it one of the biggest hurdles that both patients and organizations such as Long Covid SOS continue to face when fighting for recognition and support from their governments and healthcare systems. Through the Office for National Statistics (ONS), the UK is one of the few countries in the world that aims to keep track of the increasing number of Long Covid patients. However, if and when the ONS will stop counting, recognizing and supporting those with Long Covid will become even harder than it already is.

As we all know, hindsight is 20/20. And although we can’t change the past we should certainly learn from it and start acting, and reacting, differently. 

It was already known that viruses can lead to long term consequences and we have  known for a few years that there is indeed a certain amount of people that after one COVID infection or reinfection get Long Covid.