LCK In The News

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.