“The World Health Organization is honored to support the Long Covid Support Group and are committed to working side by side with you.”
- Dr Tedros Adhanom Ghebreyesus, Director General, World Health Organization
"The Long Covid Support Group is a vital and necessary way in which we can talk to each other about the symptoms that bother us and in some cases immobilise us or terrify us. We need to know that we are not isolated, not fantasists. When we lie awake at night wondering if we are alone with this or that pain or disability, the group is a huge comfort, reassurance and support. But more than that, it is vital that we are heard. Long Covid Support is also about numbers saying to society, 'We are the pandemic too."
- Michael Rosen, author, broadcaster and member of Long Covid Support Group.
“What Long Covid Support have done is incredible. Early in the pandemic the group become a voice for those unable to access treatment. Partly as a result of their tireless work, there is now a much greater understanding of Long Covid. By being patient-led it has become the go-to organisation for insights and expertise.”
- Kait Borsay, Presenter, Times Radio
“The Long Covid Support Group has been lifeline for me and thousands of others. Even if it can’t always provide all the answers, its message is powerful: You are not alone.”
- Ruth Liptrot, Reporter 5 News and member of Long Covid Support Facebook Group member
“As one who has spent decades in medical research trying to understand autoimmune and infectious diseases in order to help patients, it has been an invaluable, new and refreshing experience for me to engage as a Trustee with Long Covid Support. My contact there informs and complements my research, but most of all, there is the sense of being part of a team working on all fronts to address this enormous need.”
- Prof Daniel M Altmann, Department of Immunology and Inflammation, Imperial College
“Long Covid Support were critical to the success of our international project with the WHO developing a Core Outcome Measurement Set, funded by the NIHR. From the position of someone leading a project urgently needed by both the research community and patients, I can't imagine a better example of dedicated and thoughtful patient involvement.”
- Dr. Tim Nicholson, Reader in Neuropsychiatry, King's College London
“I have worked with Long Covid Support on all of my studies into Long Covid. They have provided invaluable insight. When carrying out research into any condition, but especially Long Covid, it is essential to have people with the condition as your research partners.”
- Dr. Caroline Dalton, Associate Professor of Neuroscience and Genetics, Sheffield Hallam University
“I have been working in Patient and Public Involvement for around 17 years and have never had the pleasure of working with such a dynamic, passionate and knowledgeable group as yourselves. Honestly, if you step back and look at how you've managed all the activity and work, it is incredible. The impact you have had on improving things for the Long Covid community is enormous.”
- Amy Rebane, Patient and Public Involvement, Engagement and Participation Lead, NIHR Leeds Biomedical Research Centre
“In 2020, I experienced the life-altering impact of Long Covid firsthand. It was an incredibly isolating time, as I struggled to understand why my health had changed so drastically. I felt lost and alone, unsure of what was happening to me. It wasn't until I discovered Long Covid Support online that I finally began to feel seen and understood. Their community and resources were a lifeline, helping me to navigate the challenges and find hope in the midst of uncertainty. I continue to be inspired by the dedication and expertise of Long Covid Support.”
- Jo Platt, MP for Leigh and Atherton
“It has been a pleasure to work with you again this year. Rachael [Evans] and I personally value the important difference you make to the PHOSP-COVID study work and more widely to Long Covid research, advocacy and policy. To do all this on top of having a long-term health condition is humbling. Thank you for all that you do.”
- Linzy Houchen-Wolloff, NIHR Leicester Biomedical Research Centre