March 26th 2025
As part of Long Covid Awareness Month, and to mark the fifth anniversary of the first UK lockdown, we are delivering an open letter and petition to the Department of Health and Social Care today. The letter is supported by individuals, organisations, clinicians, and researchers, and we are deeply grateful to everyone who has contributed to the campaign so far.
Click The Image To Read The Letter And Support The Petition Today
To conclude our initiatives for Awareness Month, we have sent the open letter and petition, along with a powerful video created by children affected by Long Covid, to The Rt Hon Wes Streeting MP and Ashley Dalton MP during this anniversary week of the first lockdowns.
Children Call For Action On Long Covid and M.E. Say "Don't Shut The Door On Us'
Read The Statements of Support For The Petition
"Thanks for making us kids seen" a young person living with Long Covid.
National Association for Hospital Education
"The National Association for Hospital Education is supporting this petition. We are seeing children and young people with Long Covid who are struggling to access appropriate educational provision, which is having an impact on not only their emotional health and wellbeing but also on their longer term aspirations and hope. Let's not forget these children and young people and let their illness define them - they all deserve the same access to education as their peers."
The ME Association, Dr Charles Shepherd, Hon Medical Adviser, The ME Association
“The ME Association fully supports the call by the Long Covid patient community for more funding into the cause and management of Long Covid, an immediate halt to the closure of Long Covid clinics and proper training and education of all health professionals on the diagnosis and management of Long Covid.”
MEAction UK
"MEAction UK has been calling for significant research funding for ME and other complex chronic illnesses for many years. The situation is now more urgent than ever with the increase in the number of people with ME due to Covid. The cost of ME to the UK economy has been estimated at £3.3 billion annually, the equivalent of £17,000 per patient, according to research conducted in 2017. This will have increased considerably since the pandemic. The price to the UK of not committing money to research and treat these illnesses is enormous."
PoTs UK
"PoTS UK stand united with Long Covid Kids in their campaign to fund research, stop clinic closures and train healthcare professionals in order to expand and sustain specialist services.Postural Tachycardia Syndrome (PoTS) was common before Covid (often related to viral infections) and its prevalence has soared as PoTS now commonly occurs in Long Covid.
Without diagnostic and management services for acute and long Covid, many cases of PoTs will go unrecognised, missing opportunities to provide treatment that would allow patients to lead rewarding and purposeful lives, remaining in education and work.
Services for people with PoTS and related conditions were already under-resourced before the pandemic and even more so now as no investment has been made despite larger numbers of patients needing care. NHS resources are under significant pressure as we all know yet research shows patients have visited a doctor to discuss symptoms an average of 10 times in the year before diagnosis. Clear care pathways and education in both primary and secondary care would avoid this.
More research is desperately needed into long covid and this will inevitably shed light on poorly understood aspects of related conditions such as PoTS and ME/CFS.We urge the government to use the knowledge and expertise within our charities to help educate healthcare professionals, support research and advise on care pathways with the patient at the centre."
School and Public Health Nurses Association (SAPHNA)
"SAPHNA supports the call for immediate action for dedicated support for children and young people who are experiencing the life changing effects of long covid. We support the call for the development of a strategy to increase research and treatment for long Covid, maintain the provision of specialist clinics and to ensure the doctors and healthcare professionals are properly trained to provide the specialist care the children and young people required. With over 100,000 children affected by long covid, and significant numbers impacted so severely that it is impacting their education, family, and social lives, with those from a more disadvantaged background disproportionately represented, we can not afford to invest in the specialist care that they need."
Supporting Healthcare Heroes UK
"Supporting Healthcare Heroes UK (SHH-UK) fully supports efforts to secure long-termfunding for biomedical research and treatment of Long Covid in adults and children. It is vitalto protect and expand clinical services, stop the closure of Long Covid clinics and ensuresustainable, effective care for people living with Long Covid, ME and overlapping conditions. SHH-UK also support the call for comprehensive training about Long Covid and ME for all healthcare professionals and the expansion of specialised services to ensure patients receive the care and support they deserve now and in the future."
Long Covid SOS
"Long Covid SOS supports this petition because thousands of children and adults with Long Covid and ME are being left without care, treatment, or recognition. Many are too ill to attend school or work, yet their suffering remains invisible. This neglect must end. These demands align with our Long Covid Bill of Rights, which sets out the urgent action needed to support those living with Long Covid. It’s time for real investment in research, treatment, and care."
There For ME
"Five years into the pandemic lives remain destroyed by its long-term impacts and the NHS is little closer to delivering the treatments that people with Long Covid deserve. One in two people with Long Covid develop ME: a condition that has for decades seen inadequate care and negligible research funding."
Keyworker Petition UK
"We at Keyworker Petition UK wholly support Long Covid Kids and their petition. We continue as a community to raise awareness of Long Covid, but it’s absolutely vital that we prioritise the effective treatment of our young people. This is a generation that were born and raised in an unrecognisable world. The pandemic has changed us forever and there are many that will carry the physical and mental scars of this time for the rest of their lives. That is why we feel it is imperative that our children and young people get the treatment they deserve. Please take the contents of this petition seriously, we represent over 130k people who feel strongly about the after affects of Covid on our Keyworkers and we ask you to consider beyond that the most vulnerable in society, our children. They are our future and we need to support them with all future decisions on Long Covid. Tomorrow will be too late."
Ann McConway, Early Childhood Development and Learning Lecturer
"I strongly support this petition calling for urgent action to address the ongoing crisis of Long Covid, which affects millions of adults and children worldwide. Long Covid is a complex and debilitating condition that requires sustained attention, resources, and care. I urge policymakers and healthcare leaders to take the critical steps outlined in the petition. Long Covid is not going away — it demands a coordinated, long-term response. Decision-makers must act to protect the health and well-being of millions of people. In 2022, Professor Danny Altmann predicted a 'generation affected by disability', which we are now starting to see. What he did not predict was that the government response would be to dismiss, ignore and deny the problem."
Professor Mark Faghy, Professor in Clinical Exercise Science, University of Derby
"Research is essential to developing the mechanistic insight of what causes Long COVID and without investment in research we will face an uphill struggle to improve the pathologic knowledge needed to develop diagnostic testing and potential treatments for Long COVID. Research and suitable investment are the pinnacle of scientific advances and without that, we pre-dispose many children and young people to a risk of living with chronic and disabling symptoms which will impact their future and public health more widely."
Thank you to all the charities, organisations, and individuals who sent these statements of support for the petition.
