Latest news with #LongCovidKids
Yahoo
7 days ago
- Health
- Yahoo
Long Covid campaigner co-authors ground-breaking international study
A LONG Covid campaigner has co-authored a new study highlighting the seriousness of the condition. Sammie McFarland, from Weymouth, said she was 'honoured' to contribute to a landmark international study which confirms the condition is debilitating, and the global response must be drastically scaled up. The Delphi study, involving more than 150 experts across medicine, research, and patient advocacy, represents a first-of-its-kind consensus on the priorities, gaps, and urgent needs surrounding Long Covid. It comes after the news that Covid services throughout England - including Dorset - are being scrapped. Mrs McFarland, has been at the forefront of campaigning to raise awareness of the condition, that she and her daughter live with, and set up the Long Covid Kids charity to support children living with the condition. She said: "As a Dorset resident and founder of Long Covid Kids, I was honoured to contribute to this newly published international consensus on Long Covid. "Bringing together perspectives from over 150 experts across 28 countries including clinicians, researchers, and people with lived experience. "This study represents a significant step forward in how we understand and respond to this complex condition. READ: Dorset Long Covid campaigner backs NHS doctors plan to sue "Long Covid affects hundreds of millions of people around the world, including many children and young people. Yet too often, it remains under-recognised and under-resourced. "Through this work, we reached consensus on nearly 190 recommendations to guide better diagnosis, treatment, research, and support." Mrs McFarland is a vocal advocate of children suffering with the debilitating condition and through her charity has sought to improve the support network for children and their families. She said that new study concluded that the impact of Covid-19 on children 'must be a research priority' from understanding the long-term health effects to supporting learning, development, and mental wellbeing. READ: Weymouth woman's fight against long Covid amid inquiry She added: "This consensus is more than a scientific document. It's a foundation for action to improve care, guide policy, and provide the clarity that so many families have been waiting for. "Here in Dorset and across the UK, children and families affected by Long Covid deserve to be seen, heard, and supported - as with any significant childhood disease.' The study identified ten critical areas requiring immediate action. This includes educating frontline providers to recognize Long COVID as a complex, multi-system condition involving neurological, immune, and organ dysfunction READ: Weymouth mother develops resource for kids with long Covid It also says that a universal definition for the condition should be created and that the condition should not just be recognised as 'tiredness' but includes serious complications such as immune dysregulation, neurological injury, and organ damage. The study also concludes that Long Covid is an invisible disability and that current diagnostics fall short due to lab limitations, with advanced diagnostics needed as it is not one disease, but a cluster of overlapping conditions. Experts also emphasized the need for long-term studies on how SARS-CoV-2 affects developing immune systems, brains, and hormonal balance as children are as much at risk to the condition. READ: Weymouth Long Covid campaigner hits out at clinic closures Clean indoor air and reducing airborne transmission of the virus through improved ventilation and air purification - particularly in schools and workplaces - is also essential for public health infrastructure, it concludes. Finally experts came to the consensus that Long Covid requires coordinated international funding and that it is not just a medical issue but a socioeconomic one and warns that continued inaction is a policy failure with long-term consequences.
BBC News
26-03-2025
- Health
- BBC News
Tamworth woman, 18, says she was told her long Covid was anxiety
An 18-year-old who has been suffering from long Covid for five years says she turned to a private clinic for treatment after feeling "brushed off" by the Galloway, from Tamworth, has experienced heart issues, dizziness and fatigue since catching Covid-19 when she was 12."My life just completely changed," she said. "I was always running around, active and now some days I can't get out of bed or get dressed."The NHS said staff were working hard to help patients with the "new and complex condition", and specialist clinics had supported over 100,000 since 2020. Walking through Birmingham's Cannon Hill Park, Tilly looks like any other her exhaustion and breathlessness mean she can only manage short distances about once a week. Sometimes, if she wants fresh air, she uses a wheelchair."I really don't like it. I feel really self-conscious," she said."Whenever I do go out in it, I always get stares, as if people are wondering why I'm using one." She is one of more than two million people in the UK with long Covid, which can also cause joint pain and brain first, Tilly turned to the NHS for help, where she was told chest pains and breathlessness were caused by asthma and given an inhaler. Although this reduced her shortness of breath, tests later showed she was not asthmatic and diagnosed long often felt her symptoms were not taken seriously. "They just sort of brushed it off," she said."They all just blamed it on anxiety and mental health and said I needed counselling."It just constantly feels like you're fighting a losing battle." Often too ill to go to school, she ended up having to leave in year 10, with her mum changing jobs to work from home and care for an echo scan, she was eventually diagnosed with postural tachycardia syndrome (PoTS), a condition long Covid sufferers are more likely to be affected by, where the heart rate increases very quickly after getting NHS also diagnosed gastroapresis, where food passes through the stomach more slowly than it should. She was sent to an NHS long Covid clinic but said she did not receive much support beyond a physiotherapist and occupational therapist, who were only able to offer advice on adapting to her a lot of different tests, her paediatrician said her condition was "too complex", leaving her with no answers, she said. This prompted Tilly's mum, Nicola Booton, to join a Long Covid Kids website, which led her to Dr Ben Sinclair, a GP based in set up his own private long Covid clinic after recovering from the illness himself and is working with the University of Exeter on research into the condition. Dr Sinclair described her condition as complex, due to "significant risk factors"."Her case demonstrates that long Covid is not driven by a single factor," he hopes what he has learnt from patients like Tilly will assist in producing more guidelines for young people and children dealing with long Covid."What we're finding is that some people produce way too many antibodies and some people produce very little at all," he says. "And those two groups get this fatigue syndrome because their immune system is either overactive or exhausted. "There are some medications that can help, but the research is lagging behind." Since visiting Dr Sinclair, Tilly has been on a treatment plan where she has to take medication every day."It isn't cheap," said Ms Booton, who estimated she had spent about £20,000 on private treatment. "Financially there's been a big strain on us as a family."But, she feels it has been worth the cost to see Tilly getting stronger and making some steps towards recovery. Meanwhile, Tilly is being home-schooled and working towards her maths GCSE, when she feels up to hopes to contribute more in the future by becoming a children's paediatric nurse. An NHS spokesman advised anyone concerned about ongoing symptoms after Covid to talk to their GP."Since 2020, our specialist post-Covid clinics have supported over 100,000 people with the long-term physical, cognitive and psychological effects of coronavirus," the spokesperson added the NHS had been "world leading" in "designing and implementing new pathways of care" to support affected patients.
Yahoo
26-03-2025
- Health
- Yahoo
Long Covid campaigners send open letter to Health Secretary
More than 13,000 people have signed a petition calling for urgent investment in Long Covid and chronic fatigue services - highlighting the need to fund research that leads to effective treatments. The petition has been delivered alongside an open letter signed by organisations, charities, and clinicians - including Dorset-based charity Long Covid Kids (LCK) - to Health Secretary Wes Streeting MP and Public Health Minister Ashley Dalton MP, READ: Weymouth Long Covid campaigner hits out at clinic closures The letter urges the government to take immediate action, including halting further clinic closures and highlights growing concerns around underfunding, lack of training for healthcare professionals, and the continued unmet health needs of children and adults living with Long Covid, M.E., PoTS, and other related conditions. Campaigners also want to see a long-term strategy to fund biomedical research, treatment, and monitor the wider impact of Long Covid and M.E., informed by lived experience. READ: Funding for Dorset-based Long Covid services to be cut Their call comes as the UK reflects on the five-year anniversary of the first national Covid-19 lockdown and the axing of Long Covid services - including the Dorset service - which closes at the end of June. A new report by LCK also revealed alarming gaps in Long Covid care, with the charity's founder, Sammie McFarland, from Weymouth, calling for the closures to clinics to 'stop immediately'. Sammie set up LCK in 2020 after she and her daughter Kitty developed Long Covid. She said: 'Long Covid is not going away, and neither are the children and adults who live with its effects - we need to monitor the wider impact. 'We're calling for urgent action to stop clinic closures, invest in biomedical research, and train healthcare professionals. Our young people are saying loud and clear: we want to be seen, heard, and supported.' Alongside the petition and open letter to government officials, children and young people affected by Long Covid have released a powerful video titled 'Don't Shut the Door on Us, which is now live across X, Instagram, and YouTube. READ: Weymouth mother develops resource for kids with long Covid In the short film, young people hold up hand-written signs describing the reality of living with the condition before dropping them to the floor - a quiet but striking call for recognition, care, and action. Molly, 16, who lives in Weymouth says she feels 'abandoned and hidden from view' after the announcement of the closure of the Dorset Long Covid service. She said: "I'm in my GCSE year, but I can't even go to school. I've lost the ability to do the things normal teenagers do, and there's no real support or treatment. "Thousands of children like me are suffering in silence - we need research, we need help, and we need to be seen." Kitty McFarland, 19, has been living with Long Covid since 2020 (Image: Sammie McFarland) Sammie's daughter, Kitty, who now needs to use a wheelchair due to the symptoms brought on by Long Covid expressed her gratitude for LCK and how important the charity is, especially now NHS services are closing. She said: "If long covid kids didn't exist, doctors would still believe only adults could get long covid, we are all incredibly grateful that the charity was created to educated others as no one else believed us."
