LCK In The News

Living with long Covid for four years has been "horrible", a teenager has said.
Molly, who lives in Weymouth, is now 16 and said she rarely goes out. When she does she needs the help of a wheelchair as she gets tired easily.
Without dedicated NHS support in Dorset, she is planning to travel to Liverpool to attend a private clinic.
In the absence of specialist support, Molly and her family have been doing what they can. A support dog called Woody now helps around the house. But in July, Molly will travel 300 miles (480km) to Liverpool to a private clinic, because the family cannot find help nearby.
Molly said she hoped a treatment for long Covid would be found but in the meantime she wanted "doctors and hospitals to be actually educated on it, and for us not to be judged".

Kaylee, 17, a once promising gymnast who hoped to represent her country, developed the virus on her 12th birthday and still experiences symptoms including dizziness and shortness of breath, causing her to miss school and give up on the sport she loves.
Kaylee has now not seen a specialist NHS doctor for two years. "I have tried to get in touch recently and didn't get a response," Sarah said. Sarah said she thought there should be a "thorough investigation" into the cause of long Covid, "instead of just treating the symptoms".
"There's a real lack of research into how it affects children in comparison to how it affects adults and there's real lack of support for children,"

Bethan, 20, from Pontardawe in Neath Port Talbot, was 17 and just beginning sixth-form when she caught Covid in 2021. She said she had all the "classic" symptoms of a heavy cold, but after two weeks did not recover. Bethan, who has asthma, described barely being able to lift her head from the pillow for days at a time, and said her sixth-form attendance suffered.
The charity Long Covid Kids has called on the Welsh government to ring fence money for specialist long Covid services. It said setting up a "surveillance scheme" could also help to accurately find out how many people are affected in Wales. A spokesperson said: "The services that the GPs are referring into are mainly paediatric, so there are no doctors who are familiar with long Covid, no doctors who are able to put the pieces of the jigsaw together."

New research has revealed alarming gaps in Long Covid care, with a Weymouth campaigner calling for clinic closures to 'stop immediately'. Sammie McFarland, who founded the Dorset-based charity Long Covid Kids (LCK), has reiterated her stance after the publication of a new report.

Despite NHS England confirming funding for Long Covid services through 2025/26, responses to FOI requests and direct communications with services suggests that a number of them are already closing or facing an uncertain future, the charity said.

It has already been confirmed that Dorset's own service will close on June 30 meaning anyone living with Long Covid in the county will no longer be able to get specialist care.

McFarland said: “Clinic closures must stop immediately, experienced staff must be retained, and closed clinics must reopen. Many people have endured devastating symptoms for over five years, while new cases continue to emerge".

The Independent reports on a study conducted by the University of Southampton, published in the Health Expectations journal, analysing NHS England data. The study found that 9.1% of individuals suspect they have the condition and 4.8% of people reported actually having long Covid, with higher rates observed in more deprived areas, among specific ethnic groups, parents, carers, and those with other ongoing health issues.

LCK Founder, Sammie McFarland is quoted in this article
“Pacing is a useful strategy, but isn’t curative, and takes time to learn, and even then the goal posts can change and it doesn’t doesn’t always work,” recognises Sammie McFarland, CEO and founder of Long Covid Kids. “The aim is to avoid energy crashes by balancing activity with rest.”
Sometimes medication is prescribed to help with symptoms.
Factors like sleep, nutrition and hydration are also important.

The article advises "Don’t take no for an answer, you know your body best".
“If fatigue is severe or affecting daily life, consider seeing apaediatrician or long Covid specialist (if available) or a cardiologist or neurologist for POTS or autonomic symptoms,” advises McFarland.
“Also seek guidance from an immunologist or allergy specialist if MCAS is suspected or a sleep specialist if sleep disorders contribute to fatigue.”

Journalist Emma Batha reports on the impacts of Long Covid in children, stating that five years after the World Health Organization declared a pandemic, these families feel invisible.

LCK, which now supports more than 11,000 families - predominantly in Britain, but also in countries including Canada, Greece, Italy and the United States - regularly hears of parents having to quit work.
"Families have been evicted for falling behind on their rent, and others are using food banks," McFarland told Context.
Single mum Louise eventually had to give up the job she loved.
"My savings have long gone. I'm maxed out on my overdraft and have debts," said Louise, who withheld her full name to protect her son's privacy.
One mother sent her sick son to live with her parents in the Caribbean to avoid losing her job.

Whilst the UK has the NHS, which is free at the point of use, all nine parents interviewed had been forced to pay for private treatment.
"The health inequalities are vast," McFarland added. "In 10 years' time we're going to clearly see these inequalities play out in the trajectory of these young people's future independence and work opportunities."

Almost £1 million of funding to the Dorset Post-Covid syndrome service is to be cut. The news has left Weymouth campaigner, Sammie McFarland, founder for the charity Long Covid Kids, dismayed at the decision.
She said: "As Covid infections continue and research confirms that Long Covid can last for years, the removal of local services will create a devastating gap in care".
"Many children are too unwell to travel, leaving them completely isolated. Without proper funding, these young patients face worsening symptoms, increased disability, and a bleak future".
"While there is still much work to be done, these services have laid important foundations that must be built upon, not erased".

There have been cases of teenagers suffering from long Covid for more than two years, researchers have said following the largest study of its kind

Experts said more work is needed to understand why some children still have ongoing health problems two years after the infection.

Campaigners said two years is a “long time in the life of a child”.

Experts highlighted this means that 70% who had long Covid three months after infection had recovered by two years. But 30% had not.

Sammie McFarland, from the charity Long Covid Kids, said: “Two years is a long time in the life of a child. While the study reassures us that most participants recovered within this period, the 30% of children and young people still affected highlights that long Covid remains a significant childhood illness and a pressing concern.
This underscores the urgent need for effective treatments to ease the ongoing burden of this illness. Hormonal factors in symptom persistence require further investigation. Whilst the findings offer hope, they also emphasise the need for continued services, research and collaboration, including voices of lived experience, to ensure no child is left behind. Long Covid Kids remains committed to supporting families and advocating for essential resources.”

Dr Margaret O’Hara, a founding trustee at the charity Long Covid Support, said: “The limitations of this study demonstrate the need for new, good quality prospective research into long Covid in children and young people.
“In the fifth year of the pandemic it is astonishing that the true burden of the damage that has been done, and continues to be done, to our children and young people in the UK has not been firmly established.”

"Far from rare, long COVID in kids is devastating families. Experts say schools can do more to help their students" reports Nicole Karlis.
Sammie McFarland, CEO LCK, stresses that educators’ understanding of Long Covid is crucial. Children dealing with this illness are not only suffering physically but also emotionally, feeling isolated from their friends and missing the joy of school life. The current education system is not designed to support them, and as a result, many children are falling through the cracks.
Jennifer Robertson, Laura Covington and Robin Scott discuss their children's experiences of Long Covid, their health needs and their access to education.

The Dorset Echo reports that our CEO and Founder, Sammie McFarland, is thankful that the provisional decision to not give her charity core participant status in module 8 of the Covid Inquiry has been overturned.
They quote Sammie stating that: "The voices of children and young people with Long Covid have been largely absent from conversations throughout the pandemic, allowing opportunity for misinformation, adding to their burden of stigma" and also that she is "relieved and thankful that Baroness Hallett recognised the importance of giving these doubly affected young individuals the opportunity for effective representation in Module 8 through Long Covid Kids, Bhatt Murphy and our legal team."

Nation Cymru reports on a meeting of the Senedd in July, attended by Long Covid Kids Wales Rep Kate Davies and her daughter, Bethan. Three Senedd Members from Plaid, the Conservatives, and Labour listened to stories from Long Covid patients which underlining failures in the current systems of care in Wales.
The paper reports that Bethan was only 16 when she got Covid-19, and when her symptoms persisted, she found that she was not able to be referred to an adult Long Covid specialist, and that no paediatric care offered Long Covid support. “There’s just no provision for kids with Long Covid in Wales.” said her mum, Kate Davies. After listening to these stories, the MSs agreed to co-sign the letter which will be sent to incoming Health Secretary Mark Drakeford in September. “People with Long Covid need to be treated seriously.” said Mr David.
Our team would like to thank Kate and Bethan for attending this meeting and for representing children across Wales struggling to access support for Long Covid.

We are so delighted that the Worcester News was able to report on Libby Parker's excellent set of GCSE results. As they note, Libby has been battling this long term illness and yet managed the incredible results, despite only being able to spend spend limited time in school.
Well done Libby and thank you for your continuing efforts to support and fundraise for Long Covid Kids!

Kaye O'Docherty reports that around the world, millions of people have long Covid (defined as recurring or new signs and symptoms three months after a patient falls ill with COVID-19). In the UK alone, two million people self-report long Covid symptoms. The NHS continually faces criticism for its delayed approach to helping people with long Covid symptoms, more than four years since the pandemic began.
Long Covid affects people of all ages, both adults and children. In 2021, the charity Long Covid Kids (LCK) was set up to advocate for young people living with long Covid.
We thank Victoria Priest, Merel Van Der Knoop and Dr Binita Kane for sharing their experiences here.
As Merel reports, "We desperately need clinical trials and paediatric research… We’re more than four years in and there is nothing for long Covid. No new treatment centres. Some of the paediatric long Covid hubs are actually closing down.” Merel also has long Covid, and describes it as feel like you have been "knocked down multiple times - every time you try to get up you get knocked down again".

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.

AN ADVOCACY GROUP for people suffering from symptoms of Long Covid is calling on the Government to urgently review how people with the condition are cared for.
Long Covid Advocacy Ireland (LCAI) says there are ‘huge inconsistencies’ in how people are being treated at the dedicated Long Covid clinics across the country, and a lack of knowledge among both GPs and consultants about the condition.
“What we are hearing is that patients are not receiving symptom management from clinics,” LCAI’s Sarah O’Connell told The Journal.
“There is no ‘silver bullet’ treatment for Long Covid yet. However, there’s a huge amount that can be done to help patients manage their symptoms and improve their quality of life. For example, if a patient has issues with sleep, you can prescribe melatonin. If a patient has pain issues, you could prescribe anti-inflammatories. None of this is controversial, but for some reason, almost all the patients we speak to have not had any medication prescribed by the Long Covid clinics they attend.”

Authorities in Scotland are facing increasing criticism from Long COVID sufferers, including a landmark legal case challenging the failure of authorities to provide adequate care.
In December, Thompsons Scotland solicitors formally notified NHS Grampian on behalf of the family of Anna, a child suffering with Long COVID, of their intention to pursue legal action against the health board. In January, it issued a formal letter informing NHS Grampian of the decision to initiate legal proceedings for damages stemming from medical negligence.
UK Long COVID charities have also issued a joint statement criticising a guidance update by the Scottish Government on the NHS Inform website, via the official @scotgovhealth X channel (formerly Twitter).
The groups Long COVID Kids, Long COVID Scotland, Long COVID SOS, Long COVID Support and Long
The children represented have struggled to have their conditions recognised. Those who have, have been offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

Becky Diamond's article describes the complex nature of Long Covid, the psychologising of the condition that her family has experienced, despite research showing viral persistence, inflammation, fibrinogen microclots and muscle damage and how families who have a child with Long Covid need more support and recognition from medical professionals.
Ms Diamond's article also signposts families to the Long Covid Kids Support Services.

The online choir has fifteen children from several countries, including the Netherlands. It was set up by Merel van der Knoop (42), pianist and music teacher in London, who also has long covid herself.
The children (8-16 years old) have often been ill for years, says Van der Knoop. Their physical condition is poor and they are much more at home than they would like. The very things they want so badly as a teenager are not in it: sports, music, having carefree fun with friends.
But the choir hour on Sunday evening between six and seven o'clock Dutch time is something to look forward to. An hour of singing, laughing, forgetting for a moment that you have long covid. The children are among people who know what they are going through. Not only do they sing, but they also do breathing exercises ("and now the dragon blows out!") and mindfulness.

Helen discusses how referrals to Neurology and Immunology were rejected four times and Anna was also discharged from CAMHS, who had been providing her with some physiotherapy care.
Anna has had no NHS medical care since then and her health has declined due to Covid reinfection as well as a norovirus infection. NHS Cardiology said they can not treat Anna's POTS and the family are now paying to see a private Paediatric Cardiologist.

Helen Goss says she just wants "accountability" over the alleged failings after four years of her daughter living with the condition.
Helen has since gone down the route of private healthcare for her daughter, which she explains should have been provided by NHS Grampian. Ms Goss' statement continued: "Despite repeated requests to the health board, the necessary treatment and care were consistently denied. "This failure on the part of NHS Grampian to fulfil their duty of care has resulted in medical negligence, causing additional harm and trauma to Anna and our family." Speaking with Northsound, Helen explained their referral for specialist in paediatric services was refused four times.

The action alleges the health board is responsible for “multiple failings” in Anna’s treatment and care. Helen Goss is seeking legal action against NHS Grampian. These include claims requests for Anna to be referred to the specialist paediatric services of immunology and neurology were denied.
It also claims no further help was offered after Anna was diagnosed with Chronic Fatigue Syndrome (CFS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS)
In a statement to social media, Ms Goss said during those difficult times, the family “exhausted all avenues” within NHS Grampian to help Anna’s condition.

“Anna has suffered with Long Covid since March 2020 and for almost four years, we have tirelessly navigated and exhausted all avenues within NHS Grampian. It is regrettable that pursuing legal action seems to be the only viable option to progress and secure the healthcare that Anna urgently requires and rightfully deserves. NHS Grampian has neglected to uphold Anna’s right to the best possible health, as outlined in the United Nations Convention on the Rights of the Child (UNCRC) Article 24.

Helen Goss claims NHS Grampian has not provided the care her 11-year-old daughter Anna requires.
Ms Goss has sought private treatment for Anna which she said “should and could” have been provided by NHS Grampian. In her statement, she added: “Despite repeated requests to the health board, the necessary treatment and care were consistently denied.
Ms Goss also called for improved clinical protocols for children and young people with long Covid by implementing comprehensive training and upskilling initiatives for paediatric clinicians to safeguard other families from enduring the challenges they have faced.

Sky News also report on the Legal Action against NHS Grampian. The action - led by Thompsons Solicitors Scotland - claims medical negligence towards the schoolgirl, who has suffered from long COVID since March 2020.
NHS Grampian said it could not comment on individual patient cases.
Anna has been unable to return to school, needs the use of a wheelchair, and is often confined to her bed.

A Scots mum is taking legal action against a health board over her daughter's long Covid treatment in what is thought to be the first case regarding the condition of its kind in Scotland.
Anna has been unable to return to school, needs to use a wheelchair and is often confined to her bed.
In a statement posted on X, formerly Twitter, Ms Goss said her family have “tirelessly, navigated and exhausted all avenues within NHS Grampian”.

The mother of a schoolgirl whose life has been "devastated" by long Covid is suing NHS Grampian for medical negligence in a landmark legal action.
Helen Goss, from Westhill in Aberdeenshire, is seeking damages from the health board for causing "harm and trauma" to her 11-year-old daughter, Anna Hendy, as a result of "repeated" failures to provide the "necessary care and treatment".
Ms Goss, who is chief operating officer and Scotland Lead for the Long Covid Kids charity, says her family have been forced to incur "substantial expenses" paying for private treatment which "should and could have been provided by NHS Grampian".

The mother of an 11-year-old Aberdeenshire girl with long Covid has launched a legal action against their health board, in what lawyers claim is the first case of its kind in Scotland.
Helen Goss, from Westhill, is seeking damages from NHS Grampian on behalf of her daughter, Anna Hendy.
The action claims the health board is responsible for "multiple failings" in Anna's treatment and care.
NHS Grampian said it would not comment on individual patient cases.
The claim alleges failings were avoidable, that they caused Anna "injury and damage", and led to her condition worsening.

12-year-old Rosa sings in a children's choir. Not very special in itself, until it turns out that all children have one thing in common: they are all suffering from a corona infection that they contracted years ago. The participants come from all over the world and sing with each other via a video link.
The online children's choir - in which Rosa sings - is an idea of the Dutch vocal coach Merel. She also has long covid herself. She teaches the children all kinds of breathing exercises and they sing songs. And if they don't have the energy for it, they can also hum or just go offline.
Rosa really enjoys being part of the choir. Singing is not even the most important thing. 'I like it myself, because you know you're not alone. And that others go through the same thing'

In this article, Rosa and her mother describe Rosa's experience of Long Covid as well as how she finds singing in the Long Covid Kids Choir both enjoyable and a source of social support, as she manages her condition.

LCK founder Sammie McFarland and Dr Rae Duncan Consultant Cardiologist joined Henry Bonsu on Times Radio last night to talk about Long Covid, the need for awareness and prevention and the sad news about the passing of Derek Draper.
"The entire Long Covid Kids team were devastated to hear today's sad news and send our condolences to Kate and her family. It has hit the Long Covid community hard.
Derek's story has been across the media and touched the lives of all of us, as patients or as caregivers. Kate's bravery and advocacy have really provided such incredible insight into becoming a caregiver for a loved one with chronic illness. I can really only imagine the strength required and the vulnerability she felt while fighting for her husband and caring for her children." Sammie says.
Dr Rae Duncan digs into what we know about COVID and Long Covid and explains that COVID is not like FLU also stating that "There is still a significant burden of disease happening".

Sienna, her mum Kally and choir leader Merel Van Der Knoop joined Salma El-Wardany on BBC Radio London to talk about the LCK Choir and what it is like to live with Long Covid. The song 'Winter Fantasy' by Jill Gallina which the choir recorded in December 2022 will be played at the end of the conversation.

LCK CEO Sammie McFarland, and former GB rower, Oonagh Cousins are interviewed outside the Covid Inquiry.

The BBC reports from the Covid Inquiry as Bereaved Families for Justice gather along with the Long Covid Support groups including representatives from Long Covid Kids.
There have been protesters outside the hearing on and off over the last few weeks, but never as many as today. There will be questions to Boris Johnson from lawyers on behalf of these groups as part of the hearing. This is likely to happen after the main evidence is finished tomorrow afternoon.

Mark Sedwill, the UK’s most senior civil servant at the start of Covid apologised for suggesting in a meeting in March 2020 that people could hold “chickenpox parties” to spread the virus so children and others could catch Covid and help the country reach herd immunity.
Sedwill said this was suggested in the context of the plan at the time to try to mitigate the peak of Covid, and that his idea was for people less susceptible to Covid to catch it and acquire immunity while those more vulnerable could quarantine.

Children with long Covid have been "dismissed and ignored" by those supposed to support them, the Scottish Covid Inquiry has heard. Long Covid Kids said the Scottish government and public health bodies had not done enough to help families and children had suffered as a result. Helen Goss said the charity represents more than 250 families in Scotland, with the number growing all the time. Getting these chronically ill children the treatment and support they needed was "an absolute battle every single day" for parents, she said. "There needs to be a lot more attention on long Covid," she added.

Helen Goss, charity COO and Long Covid Kids Scotland lead, told the inquiry she was shocked to overhear a top Scottish Government official describe parents as "extremists" if they wanted more done to limit the spread of Covid in schools.
She added: “I think it’s really important to highlight that because I think that it shows potentially what the Government were feeling at the time. That people who were campaigning for the health and wellbeing of children had ‘extreme’ views. I don’t believe that the health of children is an extreme view.”
Ms Goss also told the inquiry that "The impact on families is life-changing, devastating. It has broken up families".

Daniel Kebede, general secretary of the NEU teaching union, said the evidence “confirms what teachers and parents had always suspected - that Gavin Williamson prioritised point scoring over serious engagement with the representatives of hundreds of thousands of education workers about the best way of suppressing the spread of Covid-19 in schools”.

The LCK team, led by Health Lead Kirsty Stanley, were involved in the production of this leaflet by the WHO. This leaflet provides advice and support for young people aged 12 years and older who are experiencing symptoms of post COVID-19 condition, commonly known as long COVID. It aims to help you to understand and manage your condition and ask for help and support.

This paper is Long Covid Kids Scotland's written submission to the Scottish Covid-19 inquiry.
It outlines the key points that the charity leads have put to the enquiry to hear and to investigate.
"Long Covid Kids is a grass-roots organisation formed by individuals who have borne the burden of... and who have become disillusioned and frustrated by the slow, inadequate and reprehensible response by government - national and local - to the long term illness caused by Covid-19".
"Why was it [Paediatric Long Covid] not foreseen by our Scottish elected representatives and our Scottish health and education officials, exercising their responsibilities for the care, wellbeing and education of the children, and young people of Scotland?

In a special edition of our weekly news show, FYI Investigates: Kids with long COVID. An estimated 117,000 children across the UK are struggling to shake off coronavirus symptoms weeks, even months, after falling ill with the virus. Many are struggling to get the medical help that they need and some have missed out on school for more than a year. In this special episode, the kids with long COVID tell their story.

Speaking at the Covid inquiry on Friday, long Covid experts Chris Brightling and Rachael Evans said for those working in the area of post-viral diseases, it was obvious it could become a “potential problem”.
Brightling, a professor of respiratory medicine at the University of Leicester, said: “It was foreseeable to us before the pandemic because we were aware of what had happened with SARS-CoV-1 and it was even more apparent early on in the pandemic that this could be a potential problem.”
Ondine Sherwood, founder of Long Covid SOS told the inquiry “There was no public messaging about long Covid at all. So not only were people at risk of getting and developing long Covid, they didn't know about the risk. Long Covid groups protested outside the hearing centre in London today, holding signs reading: “Believe me” and: “Help me.”

The Press and Journal reports that cross-party politicians have joined forces to write to Scottish First Minister Humza Yousaf demanding answers for 175,000 people with long Covid. In June last year, Mr Yousaf met families of children with long Covid.
Helen Goss, who is COO for Long Covid Kids and Scottish Rep for the charity, is reported as saying nothing has changed to support her daughter Anna, who is in a wheelchair. “Over a year later and we still have no paediatric support, diagnostics or treatment... If families cannot afford private healthcare, they are isolated and forgotten"

Ministers are “failing” children with long Covid amid a refusal to commit more support for patients suffering with the debilitating condition, campaigners have said.
Helen Goss, whose daughter Anna now uses a wheelchair because of long Covid, said a letter by public health minister Jenni Minto was “complete drivel”.
Minto was replying to cross-party politicians demanding evidence of what action has been taken to help the estimated 175,000 people, including children, with the condition.

The WHO reports that as we transition out of the acute phase of the COVID-19 pandemic, the perplexing shadow pandemic of long COVID continues. There is a long way to go before the mechanisms of the virus are understood and broad-ranging treatments can be applied.
Professor Berg calls on health systems, politicians and policy-makers to recognize the impact of long COVID, increase access to health care for those who need it, and establish multidisciplinary health-care teams that include patient representatives in treatment strategies.

The Telegraph reports that Mr Johnson’s dismissal of long Covid emerged in comments made by Anthony Metzer KC, a lawyer acting for support groups including Long Covid Kids and Long Covid SOS.
In October 2020, while the Department of Health and Social Care was publishing guidance on long Covid and called for recognition and support for people with long Covid, then prime minister Boris Johnson scrawled in capitals that long Covid was ‘b------s’,” said Mr Metzer.
Mr Johnson has submitted a witness statement to the inquiry, chaired by Baroness Hallett, in which he also appeared to be dismissive of Gulf War syndrome – something that will likely anger war veterans as well.
The inquiry will be concerned to probe how the former prime minister could possibly hold this view in October 2020

The Evening Standard reports that Anthony Metzer KC, speaking on behalf of Long Covid Kids, Long Covid SOS and Long Covid Support, told the inquiry that Mr Johnson initially “denied the truth of the suffering” of long Covid patients.
"In October 2020, while the Department of Health and Social Care was publishing guidance on long Covid and called for recognition and support for people with long Covid, then Prime Minister Boris Johnson scrawled in capitals that long Covid was ‘bollocks’.
Adults and children were and still are suffering from debilitating, painful and terrifying symptoms for months and now years after infection, and yet Mr Johnson denied the truth of their suffering".

The Independent reports on the first day of Module 2 of the UK Covid-19 Enquiry. Anthony Metzer KC, speaking on behalf of Long Covid Kids, Long Covid SOS and Long Covid Support, told the inquiry that Mr Johnson initially “denied the truth of the suffering” of long Covid patients.
“In October 2020, while the Department of Health and Social Care was publishing guidance on long Covid and called for recognition and support for people with long Covid, then Prime Minister Boris Johnson scrawled in capitals that long Covid was ‘bollocks’.
It is perhaps noticeable that the former Prime Minister now accepts that long Covid is a serious health condition, but does not say when he changed his mind.
"The UK’s senior most decision makers were dismissing, diminishing and disbelieving the very existence and risk of long Covid.”

Pixie, now 13, told The Press: "It's been horrible. I have never really got better since I got Covid two years ago. It's annoying not doing everything my friends can do." She said the lack of treatments left her feeling hopeless. "They don't know anything to give us".
Pixie's Mum, Mary, would like more to be done for long Covid patients - and for the public to be more understanding.

Sammie McFarland, Long Covid Kids CEO, submitted a written witness statement to the UK Covid Inquiry on behalf of the children and families she supports.
"Thousands of children have suffered various degrees of life changing and long term harm to health. The importance of their voices to this Inquiry can not be understated. To my mind, these children have suffered twice over; from both the direct and indirect impacts of the pandemic".

The next generation has also been vocal in the condemnation of their exclusion from Module 4. In 2021 Long Covid Kids is currently supporting 11,000 families.
The charity's CEO, Sammie McFarland said: "We are livid. Even today, the public remains insufficiently informed about the profound risks associated with Long Covid-a nuanced, life-altering condition that is preventable. The denial of representation to the Long Covid Group in Module 4, which advocates for almost two million adults and children in the UK affected by Long Covid, perpetuates the enduring inequalities faced by countless families."
Jeremy Rossman, a Senior Lecturer in Virology at the University of Kent and Chairman of Long Covid Kids said that despite the disappointment of not being able to represent the voices of the children and families affected by Long Covid in this important module, the charity would continue to tell their story in Modules 2 and 3 and though its independent advocacy work.

Jane Ryan - a partner at the law firm Bhatt Murphy which specialises in defending civil liberties and represented the Long Covid Group in Modules 2 and 3 of the Covid-19 Inquiry - said: “In my view the decision shows the massive inequality of arms between ordinary members of the public seeking accountability for long term damage to their health from COVID-19 and the Government."
“Unlike Rishi Sunak and the Cabinet Office my clients do not have the financial resources to take the COVID-19 Inquiry to Court to review the decision. It is imperative that the COVID-19 Inquiry properly considers through out every aspect of its investigation the long-term harm done by COVID-19. To avoid and minimise Long Covid is an error the Government made throughout the pandemic resulting in devastating long-term harm to the health of thousands of people in the UK. Those shameful mistakes should not be repeated by the Inquiry: Long Covid should be central to the investigation throughout.”

Meredith Leston, public health consultant and Trustee of Long Covid Kids, said: “Children and those with a known history of COVID infection were originally excluded in the vaccine development trials that informed the products we all rely upon today. This is why it is absolutely essential that Module 4 prioritises the voices and vaccination experiences of young patients still struggling to return to health after infection.
The charity’s CEO Sammie McFarland added: “We are livid. Even today, the public remains insufficiently informed about the profound risks associated with Long Covid - a nuanced, life-altering condition that is preventable. The denial of representation to the Long Covid Group in Module 4, which advocates for almost two million adults and children in the UK affected by Long Covid perpetuates the enduring inequalities faced by countless families."

Module 4 of the COVID-19 Inquiry opens this week and will examine the roll out of vaccines, therapeutics and anti-viral treatment across Britain. However, the decision has been made to exclude representation from any Long Covid Group.
By not investigating Long Covid in Module 4, the Inquiry is in effect saying that there is no need to investigate pharmaceutical interventions which could prevent and treat Long Covid and the exclusion of the Long Covid Groups dismisses the profound impact that Long Covid has had, and continues to have, on many people in the UK.

Female First also covered this story, of the exclusion of Long Covid groups from Module 4 of the Covid Enquiry.
As well as quoting Jane Ryan, partner at the law firm Bhatt Murphy, Meredith Leston, Public Health Consultant and Trustee for Long Covid Kids and Sammie McFarland, CEO Long Covid Kids they also quote Professor Danny Altmann - the renowned immunologist and Professor of Immunology at Imperial College London - who is bemused that Long Covid sufferers “who continue to pay such a high price” due to the pandemic” have been silenced.
Altmann said: “It is hard to rationalise the omission of any voice for those with Long Covid, who continue to pay such a high price. The impact of COVID-19 cannot be counted solely through hospitalisations and deaths, vital as these are. In addition to over 226,000 deaths, the UK is home to some 1.7 million people with Long Covid - variably unable to resume their old lives"
“It’s hard to envisage a comprehensive or valid analysis of the pandemic with these voices excluded.”

Jack is one of thousands of children who have been diagnosed with Long Covid. It took one month after Jack's diagnosis to get an appointment at the Boston Children's Hospital's long COVID clinic, and another seven months until he could meet with a neurologist.
"He's not just tired, it is flat out, we can't wake him up."
Long COVID symptoms include severe fatigue, malaise, headaches and other neurological symptoms like brain fog, as well as nausea, decreased appetite, weight loss, joint pain and loss of smell and taste. Symptoms emerge in the three months after infection and last anywhere from a couple of months to years.

Natalie Kilbane from Clarehall has three children and two have developed Long Covid. One of them Lara developed Covid-19 three years ago. Since then, she has suffered a range of symptoms of Long Covid.
These include headaches, spiking temperatures, nausea and profound exhaustion. She also has joint pain.
"She has never recovered and it has had a devastating impact on her life and on family life," she added.

Indiana has been unwell since an infection in March 2023. She told the Express that while her symptoms have died down, the fatigue she suffers still continues and long Covid continues to impact her education.

Less than six months after recovering from the infection in September 2021 — which caused fever, severe chest pain and fatigue — Samir was confined to a wheelchair with long Covid symptoms.
‘I don’t remember a day without pain,’ Samir, 13, told Good Health in a voice heavy with fatigue.
The newspaper reports that while Britain led the world in developing vaccines and treatment for acute Covid, it seems research into long Covid has been left behind.

'Rosie has not given up and is fighting for young people to be heard'

Her symptoms include muscle and joint pain, shortness of breath, cognitive dysfunction, hair loss, appalling insomnia, overwhelming exhaustion which is not fixed by sleep, tachycardia and dizziness. They continue to flare up and there is no real improvement 20 months post Covid.

The BBC report recent study findings, that there was a 14% rise in childhood Type 1 diabetes during the first year of the pandemic and in the second year of Covid, the rate was up about 27% on pre-pandemic levels.
Diabetes UK is urging people to look out for the symptoms of type 1 diabetes: tiredness, thirst, needing to go to the toilet to urinate more often, and weight loss or increasing thinness - collectively known as the four Ts.

Thousands of children are missing school because of it, Christine Miles reports.
“We were actually told that if we were breathing, we didn’t need medical attention. There weren’t any guidelines then, of course, because long Covid wasn’t an entity.” Sammie McFarland says. Neither has there been any meaningful help available through the NHS. “The only real support we’ve had is by going private,”
Kate Davies says of her daughter “Bethan suffers from many different symptoms, the most severe of these being the onset of PoTS, severe fatigue, and bad headaches. She suffers daily from joint pain and has memory issues. Covid has also brought on severe food intolerances"
Alexa Edge was 12 when she contracted Covid, in September 2021. She is now 14. For almost a year, she had no contact with her secondary school in London, after previous efforts to attend a few lessons resulted in her completely crashing afterwards.

Singing and recording an anthem written for the Coronation of King Charles III is enabling people living with Long COVID to combat isolation and feel part of the celebrations, the director of a ‘wellbeing choir’ has said.
Merel van der Knoop, musical director of the Long Covid Choir, said more than half the 200 members of her online choir have been left housebound because of the condition.
Van der Knoop said that the initiative gave members of her choir a way to join in with the festivities and feel connected to the rest of the UK.

Eight-year-old Jake O’Connell has been left “exhausted and unable to do the things that he once loved” after his diagnosis of long COVID.
His father Paul O’Connell said: “He's gone from the first instance with mild symptoms – he recovered but wasn't 100% – to the second time he got it, his symptoms increased dramatically.”

Renowned art curator Ekow Eshun has been appointed to oversee the co-creation of a modern tapestry for the UK Covid-19 Inquiry that will capture the experiences and emotions of people across the UK during the pandemic. Ekow will curate the tapestry, which will feature panels produced by different artists over the coming months. The Inquiry is working with a range of organisations and individuals across the UK to identify stories to inspire each panel.

Dr Faghy is working with a team of partners to trial whether antiviral medication over a short period of time reduces the size of viral reservoirs and the severity of their symptoms.
Another group Dr Faghy is working with are children. He says “We don’t know the long-term effects on children and young people at the moment. The biggest thing for them is getting recognition. There were some public health messages during the pandemic that suggested that children can’t get Covid. We know that’s not the case, they’re just as likely to get a Covid infection as adults, in some cases more likely because they’re frequently around people.”

Following Covid in January, by February 2022 Jake had developed bad stomach pains, which his mother, as a doctor, could not understand. Not long afterwards, he began to develop a range of other debilitating and seemingly random symptoms, including dizziness, chest pains, night sweats, a face rash, peeling fingers, fatigue and diarrhoea.
Jake was seen by a private consultant in April 2022. "It was a relief to finally have it confirmed that Jay’s condition was caused by his original COVID-19 infection, after everything else had been ruled out,” says Neera. “With it, we would hopefully be taken more seriously, and not just dismissed as we had been by some professionals"

Jake O'Connell has had Covid-19 3 times. Jake went from being a typical, high energy boy to being exhausted and unable to go out. His symptoms include Paediatric Acute Onset Neuropsychiatric Syndrome (PANS) and new onset Coeliac disease.
"He was in pain and we didn't realise how bad it was for him" Paul says

We are delighted that our CEO and founder Sammie McFarland has been recognised as a Coronation Champion by His Majesty King Charles III and Queen Camilla.
Sammie said: “It’s a great honour. This will hopefully shine a light on Long Covid in children and our charity. We have been fighting so hard to raise awareness and this recognition is for all the hard work the team has been doing"

A 10-year-old girl has spoken about the pain of being hardly unable to walk and the "constant headaches" she suffers after developing serious complications from Covid.
Libby Harris, 10, from Penarth was a "very fit" and "sporty" young girl before she caught Covid-19 from her brother in February 2022.

Lorna, who lives in Penicuik in Midlothian, said her local GP was helpful and concerned for Caitlin, but it has been difficult to understand why she hasn't recovered like her friends. "She still gets pains in her legs, that's probably the worst thing along with the fatigue. There's breathlessness, chest and tummy pain, brain fog and she gets quite light-headed at times."
16 year old Abigail from East Dunbartonshire has "been bed-bound for a year now, but was first diagnosed on September 6 2021, that's when our lives changed forever," says her Mum Heather.

Amanda Jelley is the mother of 16-year-old long Covid patient Elizabeth Jelley. Alongside looking after Elizabeth while her husband works overseas, Elizabeth has her own struggles to deal with. Soon after her daughter developed long Covid, she went blind. Because Amanda can no longer drive they are forced to use local bus services or taxis costing around a hundred pounds for a one-way journey to the hospital.

Elizabeth Jelley, who has lived with long Covid for three years, says she fears going to sleep every night because she doesn't know if she'll wake up in the morning.
“I don’t know what it’s like to be a proper teenager because I’ve been housebound. I’ve not had a chance.”

For 11% of people who are infected, COVID-19 leads to Long Covid – a debilitating condition that can cause, among other symptoms, cognitive dysfunction, muscle pain, fatigue, sleep disorders and shortness of breath. Most recent counts, from January 2023, report 70,000 children are still experiencing symptoms of Long Covid; 43,000 of these children have had symptoms for over a year.

The Independent reports on the son of Long Covid Kids Lead rep for the Republic of Ireland. Sarah's son Jake O'Connell, whose Long Covid symptoms are impacting every area of his life, is currently managing only one hour's energy a day.

A report released Thursday by Canada’s chief science adviser says she considers COVID-19 the “head” of the pandemic but long COVID its “tail” as the illness inflicts significant harm on individuals, their families and potentially the country’s economy. Nemer also noted thereare very few studies on the “important area of research” involving children with long COVID.
Ian Milos, was infected with COVID-19 in March 2021 and following this infection developed inexplicable symptoms including muscle pain, chronic fatigue and extreme sensitivity to noise, leaving the family to “walk on eggshells"

Rosen, Patron of the charity said "Long COVID Kids is doing all that it can to bang the drum for these youngsters, supporting them and those who support the youngsters. I’m proud to be a patron of Long COVID Kids.”
Currently supporting 11,000 families, the charity’s vision is to achieve recognition, support and recovery for Long COVID and related illnesses in children and young people.

Michael Rosen has been announced as the first patron of Long Covid Kids, a charity supporting children and young people suffering from long Covid.
Speaking about his new role as patron, Rosen said: “The pandemic came. The pandemic went. In fact, now, all over the country people are trying to handle the consequences... Perhaps the least visible are the children who’ve been damaged by Covid, who are struggling to find their way back to fitness, overcoming huge difficulties to do with exhaustion, weakness, loss of mobility, damage to organs while their parents and carers do all they can to help"

Long COVID Kids has announced former Children’s Laureate Michael Rosen as the charity's first patron.
The organisation was founded in October 2020 by people living with Long COVID, advocating for those families, children and young people living with the illness and the debilitating effects.
Rosen is one of Britain’s best loved writers and poets for children and adults and has joined Long COVID Kids as patron after facing death himself after contracting coronavirus.

The Belfast telegraph also reports on Michael Rosen being named as Patron.
He says: “Long Covid Kids is doing all that it can to bang the drum for these youngsters, supporting them and those who support the youngsters".
“I’m proud to be a patron of Long Covid Kids.”

Michael Rosen has been announced as the first patron of Long Covid Kids, a charity supporting children and young people suffering from long Covid. The charity's founder, Sammie Mcfarland said: “We are more than delighted to welcome Michael as a champion of Long Covid Kids and as our inaugural patron. His resilience and fighting spirit during the past few years has made him a national treasure and serves as a wonderful inspiration to us all. The Long Covid Kids family look forward to working with him to raise awareness of long Covid in the young, for many years to come.”

Sammie McFarland tells Wales Online that care givers are told that their children are suffering from anxiety and that they "eventually stop trying to go and get support because it is so crushing and so demoralising and emotional, and the detrimental effect on the child and the care giver outweighs any benefit from trying to seek help".

LCK has been collecting data by surveying 382 respondents representing children and young people with suspected and diagnosed Long Covid. The results, which are being analysed by the charity and their partner, the University of Derby, make grim reading for the NHS and for healthcare providers offering treatment to the UK's next generation.

Dr Binita Kane is a Consultant Respiratory Physician in Manchester. She also has a daughter with long covid and knows the challenges that it causes and is worried that Long Covid has been deprioritised.
She is joined by Dr Melissa Heightman, clinical lead for Post Covid services at University College Hospital London.

ITV news coverage of Long Covid in Children.
Tillie and Imani speak to ITV reporter Chloe Keedy to help raise awareness of the condition. Dr Emma Parish discusses the impacts of their symptoms.

Parent and Charity CEO Sammie McFarland discusses the need for Paediatric Biomedical Research, the importance of research that involves the patient experience and unhelpful media headlines which do not accurately reflect study data (1hr8)
Alun shares parental experiences (from 2hrs8) and also interviews Professor Alwan who notes that a study solely of healthcare records can limit findings. She states the study reports that breathlessness, weakness, concentration and memory problems were higher in the study group than the control group.
Louise Whapshott, parent, discusses the Long Covid symptoms and history of her children "Their lives have been put on hold... They just exist at the moment".

Tillie Adams, from East London, has been suffering with the symptoms of long Covid for over two years. She tested positive for Covid at the end of 2020 and after recovering from cold symptoms and has continued to suffer from sickness, stomach pains and fatigue.
Appearing on Good Morning Britain with her feeding tube, Tillie said she is most excited for 'going to school and doing PE' when her health recovers.
70,000 children are estimated to be suffering from long Covid, 43000 of whom have had symptoms for more than a year.

13 year-old Pixie lives in York and caught the virus just over a year ago but still comes home from school exhausted and has aches and pains. Pixie said "Since January it's just gone up and down, in Summer I feel better, in Winter I feel awful because I just come home and I'm in pain, I get cold and I can't go to school."
Her Mum Mary says it's heart-breaking to see her daughter still unwell after all this time. She is also calling for more research into the condition.
Dr Sarah Baz from the University of York said “We need more investment in LC healthcare support, improved access to services and greater recognition for the condition. We must also address mistrust in healthcare services amongst ethnic minorities to provide them better support."

12-year-old Tillie Adams says she's desperate to get her old life back after more than two years of suffering with long Covid.
Tillie was hospitalised with Covid-19 in December 2020 and her weight plummeted, she now needs a feeding tube. She still struggles with sickness, pain and exhaustion two years later.

The most common symptoms of long COVID in children are fatigue and headaches, but young people can also have a range of other symptoms including chest pain, persistent cough, dizziness, nausea, abdominal pain, anxiety and low mood.
We don’t know whether all children with long COVID will recover or how long this will take. Parents’ narratives suggest that symptoms may fluctuate over time, and that it’s not uncommon to have a period of apparent recovery and then relapse some months later.
Binita Kane and Tracy Briggs share tips based on their own experiences as parents supporting children with Long Covid.

Naomi got Covid at the start of the pandemic in March 2020.
Although she didn't feel too unwell at the time, the virus has continued to significantly impact her life.
The BBC Young Reporter Competition regional winner has share her story about living with Long Covid whilst being a teenager.

Having long Covid can be a lonely place, particularly if you are a child, or the parent of a child who is seriously struggling.
In the second episode, hosts Dan Walker and Ruth Liptrot talk to two long Covid mums, Sammie McFarland and Jana Touati Mikusova, about their experience.

Our charity CEO Sammie discusses Long Covid and the aims of the charity with Jeremy Vine on his BBC Radio 2 show

Rosie Pidgeon, 17, is one of more than 100,000 children across the UK affected by the condition.
Her extreme fatigue, headaches and muscle pain meant she had to drop out of school and did not sit her A-levels.
But an exhibition of her art on display at the Island Arts Centre in Lisburn is a window into her world.

The effects of Long Covid can be persistent and debilitating, and for many parents, the cumulative effect of their child catching COVID-19 again on top of their Long Covid symptoms is a genuine concern.
Twinkl has partnered with Long Covid Kids and has lots of resources to help parents and educators understand the condition and support children.

The Community Arts Walkway exhibition titled ‘I am still here- giving a voice to Long Covid Kids’ displays a collection of artworks to raise awareness of the long-term debilitating effect COVID-19 on young people, which is now on view until 28 January 2023.
Rosie Pidgeon has had Long Covid for 15 Months. This exhibition is the result of her struggles at school. Some of the pieces started life as work for her AS level in Art.
Rosie often feels like the illness has made her fade from view, which has prompted her to say “I Am Still Here”.

A nine-year-old Aberdeenshire girl with long-term Covid problems has been forced to seek expensive online support and head to London for a private appointment.
Anna Hendy’s experience was raised at the Scottish Parliament. The nine-year-old, of Westhill, Aberdeenshire, has been battling health problems since her family fell ill with the virus in March 2020.