When, at the start of the pandemic, many who became ill with COVID-19 failed to get better after a few weeks, general practitioners and doctors had little understanding of why that was the case. Frustratingly, there was hardly any information or support available at that time for those who were struggling with the prolonged and debilitating symptoms of what we now call post COVID-19 condition or long COVID.
To fill this void, many long-term COVID patients took on the task of developing their own support networks, and now national long-term COVID patient associations exist in many countries in the WHO European Region.
The story behind Long COVID Kids
One such association is United Kingdom-based Long COVID Kids. It was set up by Sammie McFarland, mother of 16-year-old Kitty, both of whom are still struggling with their long COVID symptoms after more than 2 years.
“In the initial phase, we were both stuck in our own beds, in our own rooms. We could only send each other messages on our phones. I couldn’t even put my arms around her. Sometimes she’d fall on the landing and I couldn’t even get out there to help her.”
Long COVID forced Sammie to give up her job as a Pilates instructor as she was too unwell to teach. Even now, she is unsure when or if she will be able to return to the job she loves.
With financial uncertainty and new mobility issues, the family made the hard decision to move to a smaller property that is closer to amenities. Despite her own health challenges, Sammie was desperate to find help for her daughter, Kitty, whose long COVID symptoms included fainting, heart palpitations, abdominal pain and exhaustion.
“Understanding of the long-term effects from COVID-19 was still very limited and some medical staff were even suggesting that the condition could just be psychological. That was the catalyst for me to think, ‘There must be other people out there like us.'”
Sammie managed to get in touch with other parents in a similar position through the Long COVID Support patient association. This spurred her on to set up her own group dedicated to representing and supporting children and young people living with long-term COVID, as well as the parents and caregivers looking after them.
Bringing national associations together
Long COVID Europe, a Europe-wide network, was created to unite many national associations and facilitate the sharing of relevant resources, knowledge and contacts. It also campaigns for greater recognition of and research on chronic COVID and investment in rehabilitation for people living with the condition.
To date, Long COVID Europe comprises 19 patient associations across 17 countries. Ann Li, who lives in Belgium, serves as Chair.
The story behind Long COVID Europe
“My husband and I got COVID-19 in the first Belgian wave of the virus in March 2020, and unless you were old or had underlying health conditions, everybody was saying, ‘It’s just like the flu,’ and ‘You’ll get better if you just struggle through it.’ That certainly wasn’t the case for either of us. I don’t have clear memories from that time, which the doctors think was probably caused by lack of oxygen, but all I remember is the pain, not being able to breathe, being very tired and wanting to sleep all the time,” Ann counted us.
After a while, both Ann and her husband decided to go back to full-time work, but before long they regretted their decision.
“It was a mistake, looking back, to return so soon, because we weren’t ready. We weren’t rested enough, and after a couple of weeks we relapsed and had to stay off work again.”
In fact, it took until February this year before Ann was ready to work again. Even now, she is only able to do so on a part-time basis because of her reduced energy levels.
“The worst thing for me has been the ongoing brain fog, because I normally work in a very cognitive setting where I’m having to use my brain a lot. Yet, for a while, I couldn’t even talk properly. I could only talk very slowly as it was so difficult to form sentences in my head. I just couldn’t concentrate or multitask anymore. Reading became impossible. It was just horrible.”
At the beginning of 2021 – almost a year after her original infection – Ann started cognitive rehabilitation consisting of simple maths exercises, like adding or subtracting 1 or 2 from a number.
“Even that was a struggle. My son of 9 would just laugh at me because his maths was better than mine,” she laughs.
Talking about what prompted her to help set up Long COVID Europe, Ann says, “Given the lack of information and understanding around long COVID, I felt it was really important to find out what other countries in Europe were doing, so that good practices could be shared and the lives of people like me suffering from long COVID could be improved.”