LCK In The News

Campaigners for children with long Covid say they are "profoundly disappointed" after being refused official status to participate when the UK Covid inquiry focuses on the consequences of the pandemic on children and young people.

In a joint statement, Sammie McFarland of Long Covid Kids and Helen Goss of Long Covid Kids Scotland said they were "profoundly disappointed" by the decision, adding that children and young people with long Covid "have been consistently ignored, dismissed, and forgotten" throughout the pandemic.

The decision sends a "troubling message that their experiences are not valued by the Inquiry, echoing the UK government's disregard throughout this crisis",

More than 110,000 children in England and Scotland are still suffering., Sam Wollaston reports for The Guardian.
Toby got Covid in January 2022 and hasn’t been well since. His symptoms include pains, crushing fatigue, dysautonomia (racing heart on standing), often the inability to walk more than 50 metres or stand for long (they now have a wheelchair). And worst of all is post-exertional malaise (PEM), so that any activity he does manage – physical or mental – will come back and knock him out later, for days or longer.
The charity Long Covid Kids has been a lifeline for the family. “It has helped in two ways: advocating with one voice for awareness, understanding and action; and two, connecting us with people who are going through similar challenges. We are out of kilter with the rest of society.” Sarah would like to see the long Covid charities, which operate on shoestrings, granted funding to put forward recommendations for action.

In September, the Guardian published a reader callout asking for Long Covid stories. Journalist Sam Wollaston calls the response extraordinary and the stories heartbreaking.
In this article, Lucy Keighley describes her life with Long Covid and Dr Binita Kane is also interviewed. Dr Kane is a consultant respiratory physician from Manchester with a special interest in Long Covid. Her 10-year-old daughter, Jasmin, became very unwell with Covid and later developed long Covid. Jasmin didn’t leave the house for a year and missed a lot of school. Kane wasn’t satisfied with some of the advice they were getting, so she consulted doctors in Germany and South Africa who were pioneering new treatments. These helped Jasmin, slowly – over the next two years, she improved. Now 13, Jasmin is at secondary school and about 95% recovered.
Kane has witnessed the virus at all stages and from all angles. She explains that long Covid is an extension of acute Covid. “Some people don’t agree with that, but that is what those of us who are interested in it believe,” she says. And it’s not true that little is known about it. “It’s the most-studied disease in history – something like half a million papers have come out in four years. There’s never been anything like that for any other condition.”

Parents of children with long Covid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and, in some instances, court cases and the threat of the child’s removal from the home.
Doctors struggle to diagnose the condition due to its complex range of symptoms and often treat it as a psychological rather than physical disease, with parents telling i they have been accused of child abuse and of fabricating the illness as a result.
Experts have compared the situation to the way professionals have previously dismissed ME (myalgic encephalomyelitis), an almost identical disease in terms of the variety of debilitating symptoms and lack of universal diagnosis or treatment.

LCAI says there are many people who developed Long Covid following infection during the very first wave in 2020 and have had no recovery.
Sarah O'Connell, co-founder of LCAI, told the Oireachtas Committee on Health this week that some people continue to worsen, and their lives are utterly devastated.
The organisation said that those affected feel neglected and dismissed by the health system.
Along with health issues, they face problems with employment, finances, limited clinic services, plus a lack of staff and GP and public awareness.