LongCovidSOS continues to campaign tirelessly for the Long Covid community, with the aim of raising awareness of the condition in order to access medical support and research for every individual who has not recovered from the virus. In the space of five months, we have made enormous progress. From the release of the film Message in a bottle and the open letter to the Government in July, to the meeting with the WHO in August, last week saw the press release by the NHS agreeing to a package of measures to boost NHS support for long covid patients.
Although these measures are warmly welcomed by the team, we are concerned by the lack of reference to children and young people. Having become aware of the existence of children within the long covid community, we feel strongly that this situation must be addressed. One issue has been the lack of data specific to this cohort, and for this reason we devised a simple surveymonkey poll to ascertain whether children experienced similar symptoms; this was sent out on social media support groups in September.
162 parents responded, of which the majority (86%) stated that their children had ongoing symptoms of over a three-month period. 50% were children aged 6-11, secondary school age children amounted for 40%, 7% were in the upper teens, aged 16-18, and the rest were other ages. Fatigue was the symptom experienced by the most children, at 75%; 68% identified stomach pain and 61% confirmed that general gastrointestinal issues had been experienced. Further symptoms seen in over half of the children included sore throats (51%), headaches (62%) and muscle pain/ weakness (50%). Other symptoms of note included fevers, nausea, mood changes, rashes, dizziness, breathing difficulties and cognitive blunting (brain fog). The option to provide written symptoms was offered, and this led to an extensive list of unusual symptoms that capture the multi systemic nature of the condition. In a further similitude to the adult experience, the majority of children and parents (74%) described their illness as relapsing-remitting.
Although the data is limited by selection and other types of reporting biases, in the absence of any existing data it was performed as a scoping exercise to establish the need for further epidemiological data collection. The connotations of not doing so are grave, not only in terms of the health of our children but also in terms of wider policy implications. This is why we are emphasising the need to count children with Long Covid.
I contracted the virus about 2 weeks before the first official lock-down. After about 2 weeks I thought I'd gotten over it! Then It came back with a vengeance! Felt like a mallet over the head! Then I went to hell and back over about 3 weeks (felt more like 3 months!) with more of a fever response. I was so close to phoning an ambulance - never felt more frightened in my life. Don't forget this was right at the beginning of this nightmare - the government were saying that most people would have a mild illness lasting 4-5 days!!! Well this is now 8-9 months down the line and if anything I'm getting worse not better! I'm com…
Has no-one thought that LongCovid could be ME/Chronic Fatigue Syndrome? My wife has ME and her symptoms are very similar to what we hear about LongCovid with excessive fatigue, severe muscle ache / chronic pain and brain fog. In the old days ME/CFS was called Post Viral Syndrome and of course LongCovid is exactly that - a post viral problem. If these two chronic diseases are one and the same, then it makes sense to recognise that and not compete for research & clinical resources.
Simon W. Pain