I fear that a long battle for recognition is looming on the horizon for children and young people with long COVID, and their families/carers.
As I write, children and young people are at 10 Downing Street to deliver letters pleading with the Prime Minister to do more to support patients with long COVID and to agree to changes in policy to better recognise this debilitating condition.
According to the Office for National Statistics (Office for National Statistics, 2022) there are around 119 000 children and young people living with long COVID. Of this number, around 21 000 still have symptoms 12 months after their initial infection. As ever with these kinds of statistics, the true numbers will be higher. And yet, a cursory sweep of social media will tell us just how many long COVID deniers there are out there.
The charity Long Covid Kids is behind the visit to Downing Street and has just published ‘Shining a light on long COVID in children’, a guide for families and all those working with children (see pages 62 and 98).
The charity warns that many children and young people with long COVID face not being believed about their symptoms, being dismissed, or having their physical symptoms disregarded or mistaken for things like anxiety. And yet people affected by the condition, whom Long Covid Kids works with, have described how it is a ‘draining, exhausting, scary, horrible and never-ending’ condition.
Long COVID can present in many different ways and has a huge impact on the lives of those affected and their families. Symptoms can include extreme tiredness, dizziness, rashes, brain fog, headaches, chest pain, stomach pain or upset, sore throat, mood changes, muscle and joint pain or swelling, sickness or nausea, for example.
We still have a very long way to go to understand the condition, making the diagnosis and management complicated.
The untruth that COVID does not seriously affect children is another reason many children and young people are not believed. In one of the letters delivered to Downing Street, a young person explains that she had not been concerned when she caught COVID as the official messages kept reinforcing the idea that children and young people did not get seriously ill. This is blatantly not the case and must be challenged, certainly as we still have a largely unprotected paediatric population and increasingly contagious variants of the disease. Infections are also rampant in schools.
One simple thing that we can do as professionals is listening to these children and young people. And honesty is key, when we do not have an answer we cannot just dismiss the issue. We will be publishing a clinical article in CHHE this summer to help support you to support long COVID sufferers.
But I come back to my fear: for years, patients with conditions such as myalgic encephalomyelitis or chronic fatigue syndrome had to fight for basic recognition that their condition was genuine and many young people faced the accusation that they were just lazy. I sincerely hope that those suffering with long COVID do not face a similarly long fight for recognition.