When The Week Junior Science+Nature interviewed Professor of Astrophysics at Edinburgh University, and the first female Astronomer Royal for Scotland, Catherine Heymans, she openly spoke about the impact long Covid has had on her life and work. The condition affects her breathing and makes conversations difficult. Before contracting long Covid, Heymans’ job involved socialising, jotting theories onto a whiteboard and sparking ideas off other scientists, but now she is housebound. This hasn’t stopped her, though. Heymans reads and draws on her colleagues’ ideas, communicates via email and has one-on-one online conversations with people. She hasn’t given up research, saying, “I’m writing a paper right now. It’s just the way I’m doing it that is different.” The scientist adds, “It’s important to show everyone that people with long Covid are not ‘lazy’ or ‘work-shy’, which we hear all too often.” 

Long-Covid-led charity work

Long Covid affects people of all ages, both adults and children. In 2021, the charity Long Covid Kids (LCK) was set up to advocate for young people living with long Covid. One person who receives help from LCK is Victoria Priest, a home educated 14-year-old who loves astronomy, playing the cello and reading. She says her favourite thing about astronomy is “the mystery behind it all. With being ill, I was watching YouTube one day and my interest just grew.” 

Victoria describes having long Covid as, “A lot of pain in random places at random times… [which] has stopped me from doing a lot of things I used to do and loved”. For two years, she couldn’t play her cello, but recently she started playing again thanks to her cello teacher, who restrung a ukulele with cello strings and adapted music pieces for Victoria to play. 

A music teacher's take on long Covid

Merel is the musical director of the LCK Choir, and is vocal about the need for better support for people with long Covid. When we first spoke, she said, “There are 62,000 young people in the UK with long Covid [however there has been] no development in new treatment. We desperately need clinical trials and paediatric research… We’re more than four years in and there is nothing for long Covid. No new treatment centres. Some of the paediatric long Covid hubs are actually closing down.” Merel also has long Covid, and describes it as feel like you have been "knocked down multiple times - every time you try to get up you get knocked down again". 

Infographic 2: These are the main symptoms reported by people suffering from long Covid. 

People all over the world are living with these and many more long Covid symptoms. This includes parents of children who are trying to help young people grow and learn while having these battles with illness.

A doctor's experience

One parent who found herself in this position is Dr Binita Kane. The NHS doctor spent six months seeking long Covid NHS treatment for her daughter to no avail, and went public with her story. Dr Kane’s daughter, Jasmin, had to start using a wheelchair and her dad stopped working to take care of her and her sister. Eventually, Dr Kane took Jasmin for treatment in Germany because they were getting “no answers” from the NHS. Jasmin had a type of drug therapy in Germany usually used in adults rather than children, and although this treatment did come with risks, Dr Kane said that over six to eight months, Jasmin got better.

As well as helping her own child, Dr Kane works with other children experiencing long Covid symptoms in the UK. Last month, The Guardian published an article which features two of Dr Kane's teenage patients. Interestingly this new article published in June 2024 states that more than 110,000 children in England and Scotland are still suffering from long Covid whereas Merel said 62,000 young people have long Covid symptoms in February 2024 – this is further evidence that more research needs to be done into long Covid.

The teens being treated by Dr Kane

Siblings Isabel and Toby both developed long Covid and received medical treatment from Dr Kane. Although Isabel has now recovered with treatment, Toby is yet to recover. The 12-year-old experiences two primary symptoms; severe debilitating fatigue, which can be triggered by not just physical activity but also social or cognitive activity, and PEM or PESE (post exertional malaise or symptom exacerbation). Toby’s dad says these two symptoms are what limits his son, causing a crash similar to that experienced by those with chronic fatigue syndrome (a long-term condition where people feel extremely tired all the time). In long Covid sufferers, this crash occurs a day or two after doing too much, and it can sometimes last months.

Toby’s parents are concerned about how long Covid is impacting their son’s education, because currently he is only doing two or three 10-20 minute sessions of learning a day. To help, his school has installed an air filter in Toby’s classroom to clean viruses and other nasties from the air. This reduces not just Covid infections, and long Covid risks, but also other contagious illnesses that can result in child and staff absences. Toby’s family want more schools to install these air filters in classrooms.

In a way, Toby’s family have been fortunate despite having two children who have become seriously ill after catching Covid. This is because Toby’s parents say they have been able to take time off work to help their children do school work, and pay for their children to get private medical treatment. Toby’s family say charities like LCK have helped them by calling for greater awareness, understanding and action; and the charity has also linked them up with people who are going through similar experiences. Toby’s family say the UK Government needs to provide more funding to charities like LCK so that they can help more children particularly those whose parents don't have the funds to pay for private medical care.

Heymans' battles with illness

For Catherine Heymans, long Covid is not the first time she’s been hit with a serious illness. At 16 years old, she contracted chronic fatigue syndrome. To keep up her studies, she taught herself chemistry, physics and maths A-Levels from bed and says, “Studying kept me going… [because] I could still develop my knowledge”. 

Looking to the future

Now, the Astronomer Royal for Scotland, says supporting children with special needs and providing them with opportunities can be pivotal in maximising their chances at success. She has seen first-hand the positive impacts teaching astronomy can have for younger people, and recently had an idea that telescopes could be installed at Scotland’s residential outdoor learning centres. She says, “The centres are in these fantastically remote locations, so the skies are really dark. It’s a perfect place to do astronomy.” Her own fascination with astronomy was sparked on a trip to Scotland in her early teens. Heymans says, “It wasn't until I came on holiday to Scotland, and went out one night and saw that there were loads of stars” that she became transfixed by the science and beauty of the night sky. She adds, “I haven't lost that skill today.” The night before our interview, she was out lying down on a blanket in her garden looking at the stars. She beams, “It's so beautiful just imagining what's out there, your imagination can go wild.” 

Welcome distractions

Heymans’ favourite thing about space is time travel. She says, “When you look up into the night sky, you are seeing the universe as it was in the past”. It takes time for light to travel from one part of the universe to another and it travels at a fixed speed. For example, the Sun is so far away that when we look at it, it has taken eight minutes to reach us. So, when we look at the sun we're seeing it as it was eight minutes ago. “The millions of stars that we can see in the night sky are light years away, and the galaxies that I can see through my telescope are billions of light years away. I love the fact that just by lying in my back yard and looking up at the night sky, I’m looking back in time, and I find that super exciting”, says Heymans. 

Advice from a scientist

Heymans says the secret to excelling in the science world is being able to speak the language of science which is maths. She says, “There’s a misconception that maths is somehow harder than anything else at school. I would encourage people to rise to the challenge of maths. It's really easy when you find something difficult to just give up on it, but maths is one of the most important things to work on at school because from that everything else flows... Maths is the core of it all.” 

On being the first woman to hold the title, Astronomer Royal for Scotland, Heymans said, “It’s crazy that in the 2020s, we still have first women. That shouldn’t be… but things are changing and I’m proud to be part of that change. It doesn’t matter who you are, where you come from, what your background is, what your gender is. Science is for everyone. It doesn’t care about your background. It’s an exciting thing to do, and it’s fun to be able to share that with everyone.”

Throughout her battle with long Covid and in all of her scientific work, Heymans says all of her energy is dedicated to astronomy. Her advice to others living with long Covid is to “accept what your limitations are, adapt your life to be as full as it can be…”, keep learning and “pushing towards your dreams”.

Time to have your say

To any young people interested in sharing their experiences of long Covid, get in touch with The Week Junior Science+Nature. Tell us who motivates you, what inspires you or improves your mood and what gives you hope for a better future. There's a chance your thoughts could potentially be published. Contact us via email at hello@science-nature.co.uk