OUR STORY
A charity set up by volunteers, all with lived experience of Long Covid​
Long Covid SOS was born in the summer of 2020, in the earliest months of the pandemic, when a small group of people who had caught Covid-19 realised they were not recovering. At a time when the focus was understandably on preventing deaths and treating acute illness, thousands of people were being left with life-changing symptoms that simply weren’t being recognised. We found a community, our ‘lifeline’ in an online forum, Body Politic on Slack.
Many of us had been fit, active and healthy before Covid. Suddenly we were living with debilitating fatigue, breathlessness, cognitive problems, pain and a host of other symptoms, with little understanding of what was happening or where to turn for help. We knew we couldn’t stay silent.
We launched an open letter to the Prime Minister and Health Secretary calling for recognition, research and rehabilitation. Within weeks, more than 1,000 people had added their names. We also created our Message in a Bottle campaign and film, translated into multiple languages, giving a voice to people across the world who felt frightened, invisible and unheard.
In 2020 we released our SOS to the world through our Message In A Bottle video. In an effort to reach as many people as possible we translated the video into multiple languages. You can find the translated versions of the video here: https://www.longcovidsos.org/film
What began as a grassroots campaign, over the years has grown into a registered charity run entirely by volunteers with lived experience of Long Covid. We have worked alongside organisations including the NHS, NICE, the NIHR and the World Health Organization, and still do.
We are a trusted and well respected voice in the field of Long Covid. We have consistently challenged attempts to minimise or misrepresent Long Covid, campaigned for greater investment in biomedical research, improved clinical care and equitable access to services, and ensured that the voices of people living with Long Covid are heard where decisions are made. No one gets left behind.
The charity was devastated by the loss of our co-founder and CEO, Ondine Sherwood, in March 2025. Her courage, determination and unwavering commitment to patients helped shape Long Covid SOS from the very beginning and laid the foundations for everything we continue to do today.
Following Ondine’s passing, in 2026 Sarah Barley-McMullen became our new Chair, leading the charity into its next chapter. Under her leadership, Long Covid SOS has become an even stronger patient-led organisation, with people living with Long Covid at the heart of every decision we make. Our trustees, volunteers and advisers all share a commitment to ensuring that lived experience sits alongside scientific evidence in shaping policy, research and healthcare.
Today, we continue to represent the Long Covid community at the UK Covid Inquiry, work collaboratively with researchers, clinicians and policymakers, and provide trusted, evidence-based information to patients, healthcare professionals and the public.
We also believe that everyone living with Long Covid deserves dignity, respect and access to appropriate care. That is why we launched our Long Covid Bill of Rights, setting out the fundamental rights that every person living with Long Covid should be able to expect, from timely diagnosis and evidence-based healthcare to support at work, in education and in society.
Garry Loftus, Ondine Sherwood and Helen Lunt Davies
We will continue to campaign until those rights become a reality.
As we build on Ondine’s legacy, our mission remains unchanged: to create a world where Long Covid is prevented wherever possible, effective treatments are available to everyone who needs them, people’s rights are recognised and protected, and the prospect of recovery from this debilitating and life-changing disease becomes a reality for us all.
