On the 16th of February 2023 the WHO published the first clinical case definition for children and adolescents, formed through a process of expert consensus, which recognises the unique health needs and challenges of children and young people.
The World Health Organisation Definition
'Post COVID-19 condition in children and adolescents occurs in individuals with a history of confirmed or probable SARS-CoV-2 infection, when experiencing symptoms lasting at least 2 months which initially occurred within 3 months of acute COVID-19.
Current evidence suggests that symptoms more frequently reported in children and adolescents with post-COVID-19 condition compared with controls are fatigue, altered smell/anosmia and anxiety. Other symptoms have also been reported.*
Symptoms generally have an impact on everyday functioning such as changes in eating habits, physical activity, behaviour, academic performance, social functions (interactions with friends, peers, family) and developmental milestones.
Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. They may also fluctuate or relapse over time.
Workup may reveal additional diagnoses, but this does not exclude the diagnosis of post COVID-19 condition.
This can be applied to children of all ages, with age-specific symptoms and impact on everyday function taken into consideration.'
LCK CEO Sammie McFarland was pleased to be invited to join the WHO expert panel which comprised 14 clinical researchers, five clinicians, three researchers, three patient advocates, one paediatric rehabilitation expert and one developmental paediatrician. Learn more about the method here.
Long Covid Kids Position Statement
Long Covid Kids welcome the publication of a WHO clinical case definition of Long COVID in children and young people. This was much needed and provides parity with the definition for adults. The definition was developed during a joint exercise between experts and community members with lived experience, with the goal of reaching a consensus, and we appreciated being invited to take part in this process. However, we are very disappointed in the published content and would like to highlight that there are widespread concerns regarding the published definition. In our opinion, the new WHO clinical case definition for Long Covid in children provides a misleading representation of the disease.
Firstly, the WHO has chosen to emphasise the three most common symptoms in the core definition; however, this conflicts with the broad multifaceted nature of the disease. The FAIR HEALTH paper (2021) lists anxiety as the fourth most common symptom in ages 0-18. This is the same for 30-39-year-olds, but Long Covid in adults is not clinically defined by anxiety.
When FAIR HEALTH repeated this exercise in 2022, looking at medical diagnoses rather than symptoms, they found that in 0-12-year-olds, anxiety wasn't even in the top five diagnoses.
Furthermore, whilst the three symptoms have been identified as the most frequent, that is based on a limited number of studies and does not account for the fact that in children, as in adults, Long Covid encompasses a wide range of symptoms. This is indeed acknowledged by the WHO in the published report where they state that “due to the lack of empirical evidence, a broad list of symptoms should be considered until more data is available.".
Long Covid is a multi-faceted disease where most individuals are affected by a range of symptoms and impairments that may vary over time, and impact well-being, daily functioning and social participation.
Focusing on three symptoms could inadvertently create a false narrative that only children with these three symptoms have Long Covid and that these three symptoms define Long Covid. In the experience of Long Covid Kids families and our clinical ambassadors and Trustees, these three symptoms are not the most significant for clinical management or patient well-being. As we learnt from the ME/CFS Community it is vital to identify PESE in order to select the appropriate approach to activity in order to prevent harm.
Finally, the inclusion and wording of anxiety as a core symptom is problematic as Long Covid is often dismissed as being ‘all in the head’, and so using the word anxiety within the core definition may make it easier for Long Covid to be dismissed as a psychological and not biomedical disease. We have ample evidence of the biological mechanisms of disease and many Long Covid studies now use the term neuropsychiatric or neuropsychological to group several symptoms together and highlight that there is a biological underpinning of the psychological symptoms. We have seen previous examples where well-intentioned and well-performed research has contributed to the minimising of Long Covid because of misleading wording in the overall conclusion that was then rapidly amplified in the media. Unfortunately, for these reasons, the current clinical case definition of Long Covid in children is likely to do more harm than good for this highly vulnerable population.
“One of the main functions of a clinical case definition is to enable better patient care and improve outcomes. Unfortunately, the core framing of the recent WHO definition of Long Covid in children mis-represents the disease, and as a result is unlikely to improve patient outcomes and may actually worsen them.” Dr Jeremy Rossman, Chair of the Board of Trustees, Long Covid Kids & Friends
"I was pleased to support the WHO in the development of this first clinical definition and our members welcome the recognition of Long Covid in children and young people. However it is important to differentiate between anxiety as a pathology or anxiety due lack of treatment and the other experiences common to any long term illness. Including some symptoms above others, based on limited research will frustrate care pathways for families. This process clearly highlights the dearth of research in children and young people and the need for investment in biomedical research has never been greater. Children need treatment options” Sammie McFarland, CEO & Founder Long Covid Kids & Friends
“Why would they say this? I don’t understand? That’s obviously not the 3 main symptoms! I don’t understand why they are not being honest about what it’s like to have Long Covid and why doesn’t anyone want to help us? If they know what it is actually like then someone can put in a plan to help us all get better but this isn’t right at all.”Violet, 13, Young Person Living with Long Covid for over 12 months
Initial Comments From LCK Members
"you know that medical professionals and those treating are just going to see that bold word and say.... I told you so and lump it all together as being in the heads of our children. Not an ideal or helpful definition "
"Having been a member of this group for over a year now I wouldn’t say altered smell/anosmia was the thing I see most posts or concerns about, so strange this is listed in the top 3. I also completely agree with others that anxiety is a direct effect of the impact of the illness and should not be implied only those with anxiety get LC or that it’s all in the head. There is no mention of PEM in the extended list, which I know is very common and means most if our kids are required to pace. Disappointing it has taken 3 years to get a definition- and this first draft misses the mark"
"My daughter's post covid symptoms were dismissed as 'anxiety' for 2 years, she had developed epilepsy"
"Agree with all the above comments. My son was sent to a psychiatrist who diagnosed him with generalized anxiety and *promised* him that his symptoms would be gone within 3 weeks on an antidepressant. Poor kid’s face just lit up. So cruel. Of course it didn’t happen. We’re nearing 2 years"
"I think it's a shame that one of the highlighted symptoms is anxiety. I mean not dismissing anxiety entirely but I think the anxiety comes from being chronically ill and no one knowing how to help you and support being inconsistent and medical professionals constantly gas lighting. I think the anxiety is a by product of the illness itself if that makes sense. The mood changes etc are a symptom caused by the illness and not connected to the anxiety. I just think this definition although addressing the other symptoms in the list gives support to medical professionals that this is all in our childrens head by being one of the symptoms listed in the main text in bold"
"I would also be interested in the reasoning behind a hard timeline of 3 months, if a child falls outside of that timeline does that mean their ailments could never be determined as PASC?"
"listing anxiety as one of the main symptoms of LC drives a specific narrative that has been used to consistently invalidate physical symptoms and the need to diagnose and treat properly LC patients. The medical community is quick to dismiss anything they don't understand or don't know how to treat at coming from anxiety i.g. it's all in your head that you have problems taking a big breath, have chest pain, stomach pain, dizziness, etc. It diverts the discussion from what society has to do to help the patients to "there is nothing we can do, as it's just psychological."
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery, has already received recognition from the NHS and the Centre for Disease Control in the USA, and is a recommended resource in the NICE Long Covid guidelines.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people
Support Our Work
While children are living with life-changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
