The Event
On March 15th, 2025, Long Covid Support launched its three-year Community Strategy at an event held at the Lyric Theatre in Hammersmith. Marking Long Covid Awareness Day, it was a deeply moving afternoon that brought the community together under the theme "Coming Together, Reflecting on Our Progress, Shaping What’s Next." It was a moment to recognise how far the Long Covid community has come and to lay out the plan for the road ahead.
Backdropped by the Long Covid Support Community Banner, Trustees Dr Margaret O’Hara and Aimie Cole spoke alongside special guests: Rt Hon Jo Platt MP, Chair of the All-Party Parliamentary Group (APPG) on Long Covid, and Professor Danny Altmann, Trustee and leading Long Covid researcher at Imperial College London.
Coming Together
Long Covid Support began as a Facebook support group, founded by individuals living with Long Covid, and has remained a patient-led community ever since. That spirit of lived experience and collective support was evident throughout the event, which brought people together both in person and online.
The event opened with the first exhibition of the Long Covid Support Community Banner, a collaborative artwork made from fabric squares submitted by people living with Long Covid and those caring for them. Each piece tells an individual story, and brought together into a single tapestry, the banner stood as a powerful symbol of the community’s unity and collective strength. Special thanks go to Lucy Algar and the BA Theatre Design students from Wimbledon College of Arts who brought this vision to life.
Founding trustee Dr Margaret O’Hara reflected on the early days of the Facebook support group, when people with unexplained symptoms first connected online. It quickly became a space for people to share their experiences and seek support - often where none was otherwise available. From these early conversations, the term “Long Covid” began to take shape - coined and championed by patients themselves. Alongside other early grassroots initiatives, the group helped shape the initial understanding of the condition and build momentum toward broader recognition. As Margaret reflected,
"In a matter of months, information shared by patients moved from informal spaces into formal clinical and policy arenas. This early mapping of Long Covid highlights how patients asserted their expertise and authority.”
Since those beginnings, the Facebook group has grown to over 67,000 members and remains a vital space for support and shared learning, continuing to grow by around 1,000 new members each month.
Rt Hon Jo Platt MP, who has personally experienced Long Covid, sent a video message for the event. As Chair of the newly formed All-Party Parliamentary Group (APPG) on Long Covid, she expressed deep gratitude for the charity’s support during her illness and described its ongoing work as “invaluable.”
Reflecting on Our Progress
Five years on from the start of the pandemic, the event offered a meaningful moment to reflect on the remarkable progress driven by the patient community. From coining the term "Long Covid" and defining the condition in its earliest days, to advocating for improved recognition, research, and care, people living with Long Covid have been at the forefront of change.
Trustee Professor Danny Altmann commended the community and the charity for their critical role in pushing forward our understanding of the condition. He highlighted the strides made in scientific research, but also raised concerns about the ongoing lack of institutional urgency and investment. “We know an awful lot,” he remarked, “but there’s still far too little attention on finding solutions.”
He urged the community to maintain pressure on government and health systems to prioritise Long Covid in policy and funding. Dr. O’Hara echoed this call to action, emphasising the importance of continued advocacy and collaboration. She described both Professor Altmann and Rt Hon Jo Platt MP as among the community’s “greatest advocates,” recognising their tireless efforts to elevate the voices of people living with Long Covid and push for change.
Trustee Aimie Cole also spoke movingly about the charity’s work over the past five years;
“Very unwell people found each other online,” she said, “offering support and demanding answers. A Facebook group became a movement - patient activism at its most powerful, refusing to be invisible, refusing to give up. Despite being seriously ill, they spoke to researchers, doctors, journalists, and policymakers - relentlessly pushing for recognition when Long Covid was barely understood. They amplified patient voices when research needed real-world insights. They sat at tables in Whitehall, advocating for services, funding, and policy change. Through it all, they remained a lifeline for each other - a community that held one another up in the darkest times.”
This moment of reflection underscored how far the movement has come, but also how far there still is to go.
Shaping What’s Next
Trustee Aimie Cole shared a moving personal account of her experience of Long Covid. She described the fear, confusion and the isolation of not recovering and the relief of finding others who understood.
That same spirit of connection and collective action is now being channelled into the charity’s future direction. Aimie introduced the new Community Strategy - a clear and ambitious three-year plan designed to focus efforts, maximise impact, and build on the foundation of patient-led advocacy. As she explained, the strategy is a way to organise ourselves to ensure that the work ahead is as coordinated and effective as possible. The strategy outlines five key priorities that will guide the charity’s work:
- Build a community of support, our organisation and a wider network for change
- Accelerate the search for treatments
- Push for access to dedicated health and care services
- Enable access to appropriate work, welfare and wider support
- Prevent new cases of Long Covid
These goals reflect the collective voice and vision of the community, ensuring that the lived experience of people with Long Covid remains at the heart of the movement.
To read the full strategy and mission statement, follow this link to the Long Covid Support website:
Our Strategy - Long Covid Support
You can also watch a recording of the full event, which includes the presentation of all the fabric pieces for the banner:
As declared by Trustee Dr. Margaret O’Hara as she closed the Community Strategy Launch Event,
“Let’s work together, let’s make change happen.”
