An open letter to Yvette Cooper -Secretary of State for Health and Social Care

We have written to the new Secretary of State for Health and Social Care, Yvette Cooper, congratulating her on her new role and urging the government to recognise Long Covid as an ongoing public health challenge and to take action for the millions of people affected.

In our letter, we call for:

• Full implementation of the UK Covid-19 Inquiry recommendations

• A long-term national strategy for Long Covid

• Sustained investment in biomedical research

• Equitable access to safe, evidence-based care

Read the letter below.

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21st August 2026 The Rt Hon. Yvette Cooper MP

Secretary of State for Health and Social Care

Department of Health and Social Care

39 Victoria Street

London

SW1H 0EU

Dear Secretary of State,

On behalf of Long Covid SOS, congratulations on your appointment as Secretary of State for Health and Social Care. We wish you every success in your new role at a time of huge change and unprecedented pressure for the NHS, as it continues to respond to the ongoing health consequences of COVID-19 and the growing number of people living with Long Covid and other long-term health conditions.

We are a UK patient-led charity dedicated to improving the lives of people living with Long Covid. We provide trusted information, raise awareness, campaign for patients’ rights, and work with clinicians, researchers and policymakers to improve care and advance biomedical research.

We understand that you have previously spoken about experiencing ME/CFS yourself and the importance of having a GP who took your illness seriously when the condition was poorly understood. We are encouraged that you have shared this experience publicly, as it highlights something that remains profoundly important today: listening to patients, recognising poorly understood and ‘invisible’ conditions, and ensuring people receive compassionate, evidence-based care.

Long Covid is a complex, multisystem condition triggered by SARS-CoV-2 infection. It can persist for months or years and develop after mild or severe infection, whether or not someone was hospitalised, and following first infections or reinfections. It can affect people of any age, fitness level or background and involve multiple organ systems, including the heart, lungs, brain, kidneys, liver and nervous and immune systems. Some people experience ongoing functional impairment, while others develop organ-specific complications.

While Long Covid is distinct in having a known trigger, it shares many clinical features and challenges with ME/CFS and other post-infectious illnesses. A substantial proportion of people with Long Covid, though by no means all, meet diagnostic criteria for conditions including ME/CFS, PoTS and other forms of dysautonomia, while others develop cardiovascular, endocrine and other complications.

There is no definitive diagnostic test for Long Covid. The withdrawal and discouragement of COVID-19 testing also means that many people whose illness followed SARS-CoV-2 infection may instead receive a diagnosis of ME/CFS or another post-infectious condition. The true prevalence and impact of Long Covid may therefore be underestimated. Regardless of diagnostic label, people with post-infectious illness deserve timely recognition, evidence-based care and appropriate support.

The impact extends far beyond individual health. Long Covid has affected millions of people across the UK, with many unable to work or forced to reduce their hours, placing significant pressure on families, the NHS and the wider economy. A recent health economic analysis estimated the impact at approximately £8.1 billion a year across England and Scotland, with a cumulative cost of around £24.2 billion since Long Covid emerged. Investment in research, diagnosis and effective treatment is therefore both a health and an economic priority.

Through our Long Covid Bill of Rights, we campaign for the rights of people living with Long Covid, including timely diagnosis, safe and evidence-based healthcare, sustained biomedical research, appropriate employment and financial support, and meaningful involvement in decisions affecting their lives.

We have enclosed our Long Covid Bill of Rights and a short briefing about Long Covid.

We also believe the Government should commit to implementing the recommendations of the UK Covid-19 Inquiry in full and without delay. The Inquiry has recognised Long Covid as a direct long-term impact of the virus and highlighted continuing variability in access to care, alongside the scaling back of research despite the need for greater understanding. We urge the Government to ensure its findings inform future policy, research, healthcare resilience and pandemic preparedness.

We therefore ask that you:

• Commit to implementing the recommendations of the UK Covid-19 Inquiry in full and without delay, ensuring its findings about the lasting health consequences of COVID-19 inform future policy and preparedness.

• Develop a long-term national strategy for Long Covid, recognising it as an ongoing public health challenge.

• Commit to sustained investment in biomedical research, improved diagnostics and effective treatments for Long Covid and related post-infectious conditions.

• Ensure equitable access to safe, evidence-based NHS care and uphold the rights of people living with Long Covid, as set out in our Long Covid Bill of Rights.
  

Long Covid SOS would welcome the opportunity to meet with you or your team to discuss how we can support the Department of Health and Social Care in delivering these ambitions. As a patient-led charity, we bring lived experience, clinical expertise and scientific understanding, and are committed to working constructively with the Government to improve outcomes for everyone affected by Long Covid.

We look forward to working with you and your department.

Yours sincerely,

Sarah Barley-McMullen Chair, Long Covid SOS