A New Chapter for Long Covid SOS: Leading with Lived Experience
- Sarah Barley-McMullen
- 1 day ago
- 3 min read
When I first joined as a volunteer in March 2023, I could not have imagined that just a few years later I would be stepping into the role of Chair. It is both an enormous privilege and a profound responsibility to help lead a charity that has become such an important voice for people living with Long Covid across the UK and beyond.
This feels like the beginning of a new chapter for Long Covid SOS — one grounded firmly in lived experience, collaboration, and the unwavering belief that patients must remain at the centre of every conversation, every policy decision, and every research agenda about Long Covid.
Standing on the Shoulders of Giants
No reflection on this moment would be complete without acknowledging the extraordinary legacy of our co-founder Ondine Sherwood.
Ondine helped create not just a charity, but a movement. She transformed the pain, uncertainty, and isolation experienced by thousands into collective action and advocacy. Her leadership changed the national conversation around Long Covid and gave many people a voice at a time when they were too often dismissed or ignored.
Like so many others in the Long Covid community, I feel that I am standing on the shoulders of Ondine and those early patient advocates who fought tirelessly to make this illness visible. Their courage built the foundations we now have a responsibility to strengthen and carry forward.
Why Patient Leadership Matters
Long Covid SOS has always been a patient-led organisation, and that matters deeply to me. Too often within healthcare systems, lived experience is treated as secondary to clinical expertise or research evidence. But patients are not passive subjects of healthcare systems or research programmes - we are experts in the reality of living with illness.
My belief is simple: patient stories are empirical data.
The experiences people share about symptoms, relapses, barriers to care, discrimination, employment loss, poverty, stigma, and survival are not anecdotal side notes. They are evidence. They reveal patterns, unmet need, systemic failures, and emerging realities long before institutions are prepared to acknowledge them.
Some of the earliest understanding of Long Covid came directly from patients documenting and sharing their experiences. Without those voices, many people would still be invisible.
That is why protecting patient leadership and ensuring lived experience remains central to governance, advocacy, and research is not optional - it is essential.
Advocacy, Equity, and Collaboration
My professional background is rooted in academia; social science, equity, diversity and inclusion, and systems change. Throughout my career, I have been passionate about advocacy, particularly for communities whose voices are too often marginalised or excluded from decision-making.
Long Covid intersects with disability, inequality, gender, race, class, employment, and access to healthcare. We cannot separate the illness from the wider social systems people must navigate while living with it.
I also believe strongly in collaboration. No single organisation can address the scale of this crisis alone. Progress depends on building meaningful partnerships across patient groups, researchers, clinicians, policymakers, and charities. One of my greatest strengths has always been bringing people together, building networks, and creating spaces where collaboration can thrive, even when conversations are difficult.
The Long Covid community deserves unity, transparency, and collective ambition.
Moving Forward with Determination
This next chapter for Long Covid SOS is about moving forward with clarity and determination. There are still too many people living without adequate healthcare, financial security, recognition, or hope. Research remains underfunded. Services remain inconsistent. Too many lives have been turned upside down.
But I remain hopeful because I have seen the strength, brilliance, and resilience of this community firsthand.
As Chair, I want Long Covid SOS to continue pushing for meaningful research, better support, policy change, and greater public understanding - while never losing sight of the people at the heart of this movement.
Everything begins with listening to patients.
And everything meaningful grows from believing them.
