Long Covid patients “feel abandoned” amid new COVID strains

Long Covid sufferers who founded a patient voice charity to support those affected and enabling World Health Organisation (WHO) definitions of the illness have been left ‘exasperated’ by lack of Government support and the need to scale up campaigning amidst a new wave of the infection.

Long Covid SOS played an integral role in 2020 in documenting patient experience of Long Covid and has since supported those in the UK and around the world seeking trusted information on medical developments whilst giving a platform enabling its recognition as a clinical condition.

In an open letter to the Health Secretary, Wes Streeting, Long Covid campaigners say the impact of debilitating condition has been compounded by the need to campaign relentlessly to “get Long Covid crisis on the health agenda” forcing them to make “a public appeal for funds to get the support they need to have the momentum to continue to fight for better outcomes.”

They continued: “The condition impacts quality of life, causes financial strain and in particular, doesn’t discriminate – our volunteers include younger people, parents, older people and healthcare workers who are disproportionately affected, putting healthcare services at high risk.”

While at least 2M people in England are thought to have Long Covid, which can be diagnosed if its symptoms continue 12 weeks after a COVID-19 infection, figures suggest at least 700,000 people in England and Scotland have had the condition for more than three years. Symptoms include fatigue, pain, allergies and rashes, palpations, breathlessness and sleep disorders, loss of smell and taste.

Serious concerns spark fundraising appeal

In order to scale up efforts, the volunteers are hoping to fundraise for a paid Campaign Manager to amplify their mission; support its volunteers, advocating for Long Covid sufferers across the UK, responding to government and media enquiries, lobbying for and commissioning research – and maintaining pressure on policy makers, budget setters and public health commissioners.

Dr Lucy Moore, a qualified medical doctor in population health, and parent of a Long Covid sufferer, and Chair of Long Covid SOS, says: “We’re now five years on from the pandemic and millions of people feel left behind.

“We are now facing a new wave - Long Covid evolves and people experiencing symptoms over a period of 12 weeks, 3 months, 6 months, or even a year or two years, number in the hundreds of thousands in the UK.

“More research is needed, better treatments are essential, and ultimately medical solutions that prevent Long Covid need to be created. Now is not the time for complacency.

“As Long Covid patients ourselves, we can no longer do this alone. The crisis is hiding in plain sight and we need help to act.”

Long Covid SOS’s chief campaigner and Co-Founder Ondine Sherwood, who passed away in March 2025, left a legacy that volunteers want to build on. Campaigners hope to build on Ondine’s work.

Helen Lunt Davies, 56, from Stroud, Gloucestershire has been with the charity since early 2021, although she knew the charity’s founding volunteers from mid 2020. She has had Long Covid for nearly 6 years. She says: “I’ve been a shell of my former self since my Long Covid diagnosis, it has ruined my life.

“I first caught COVID in early 2020, before anyone understood what it was. My flu-like symptoms dragged on for months, and I’ve never returned to my previous level of health. After 2 years I had recovered a little, just as I’d regained some strength, sometimes walking 5,000 steps a day, I was reinfected.

“I caught COVID again at Christmas 2023 and now, over five years on from my initial infection, I still have heart palpitations, neurological issues, migraines, fatigue and tinnitus, and I am now on ten prescription medications to manage - but not cure - my ongoing symptoms.

"I met the other early campaigners during the first wave while chatting on an online forum, which was a lifesaver. We were all finding it difficult to make our voices heard, we were scared about the unknown and thought we were going to die. Together, we built a community which became a charity led by patient voices, creating a space to support one another and fight for recognition. Even from my bed, I used my background as a designer (a job I've now had to give up) to design our graphics and campaign materials. But with many of us still unwell and our beloved co-founder Ondine passing in March this year, we are simply exhausted, we need real support to continue this fight. None of us know what the future holds and we don't want others to be in our position.

"Our campaign calls for a Bill of Rights for everyone living with Long Covid, which includes the right to be believed, to a diagnosis, to proper support, and to funded research. We also want to keep raising awareness about prevention, so fewer people have to endure what we’ve been through. I am changed undoubtedly.

“But in a way I have found a strength I never thought I had, a need to share the reality of life with Long Covid and to try to make a difference for the people who have it. Long Covid has stolen my health, my freedom, my work, and time with my family, but it hasn’t taken my voice. And I’ll keep using it for all of us who are still living with this illness every day.”

To find out more about the Campaign Manager fundraising campaign, visit https://localgiving.org/fundraising/LongCovidSOSCampaignsManager