Passing On The Baton
Today I complete my last duty as the inaugural Chair of Long COVID Physio. I hand over leadership to a new team.
Long COVID Physio was born in 2020 out of the need for connection among Physiotherapists living with Long COVID. We shared our personal stories of Long COVID to better understand our own and shared experiences. The 9 founding members (Cathy, Caroline, Daria, Darren, Hannah, Keeley, Mary, Sean, and Ted) created Long COVID Physio, which quickly grew and evolved. Our founding members can be proud of creating a global movement that changed and advanced international responses to Long COVID.
Between 2021 and 2023, I served as the first Chair of Long COVID Physio. I am immensely proud of what we accomplished together as a team. As I pass the baton to an exciting new leadership team, with a new organisational structure, I want to take this time to reflect on our collective achievements, in the hope that our history may act as a strong foundation for the continued growth and evolution of Long COVID Physio.
Our greatest achievement to date has been our multilingual website, with more than 12,000 monthly website visits and 20,000 monthly page views in 2023. Last year, in 2022, our website was visited more than 199,000 times with 319,000 page views annually, both increasing from the previous year by 114% and 65% respectively. Our website has been accessed in over 100 countries and regions, demonstrating truly global reach and impact. Our educational resources are the most visited content, specifically post-exertional symptom exacerbation and exercise. Our website is available in English, French, Brazilian Portuguese and Spanish, hosting our original and ongoing work including podcasts and blogs. We are grateful for the feedback we have received about how valuable and important our website has been for people with or affected by Long COVID, clinicians and researchers. Our website is constantly updated with new and emerging science, information, original content, and resources, which has been no easy undertaking.
In 2022 we released the Long COVID Video Series, an 8-part educational video series about Long COVID, created in partnership with Fisiocamera, and born out of connections made at the World Physiotherapy Congress 2021. So far, 6 episodes have been released in English including what is Long COVID, why is it called Long COVID, common Long COVID symptoms, the episodic nature of Long COVID, the impact of Long COVID on day-to-day life, and safe Long COVID rehabilitation. Videos on pacing and exercise are coming soon. Our videos have been co-created with many volunteers, including people with Long COVID, scientists and clinicians. The video series is also translated into different languages including Arabic, Bangla, Mandarin (Simplified Chinese), German, and Spanish, with more languages coming soon. The Long COVID Video Series has been viewed over 2 million times across different channels and languages. They are free to access and have been a cornerstone of our education and advocacy work. They have created opportunities for people around the world, irrespective of language, to learn more about Long COVID and advocate for their needs.
The Long COVID Physio International Forum #LCPForum was held virtually in September 2022 in partnership with Rocky Mountain University of Health Professions. Over 800 people from over 100 countries attended online, with 60 speakers from 17 different countries. All topics were recorded and are freely available, having been watched over 11,000 times. Safe rehabilitation and disability inclusion were central themes of the Forum. Priorities in research, education, clinical practice, and policy emerged from the Forum, that can guide emerging and future responses to Long COVID.
Since 2020 our work has embraced mixed media. It’s been diverse and spanned multiple outlets. We were part of the development group for the World Health Organisation guidelines on Long COVID rehabilitation, we lead the seminal World Physiotherapy Briefing Paper on safe rehabilitation, we peer-reviewed the Chartered Society of Physiotherapy rehabilitation standards for hospital and community settings, were stakeholders in the NICE Long COVID Guidelines, delivered Long COVID courses with Physioplus and Medbridge, and wrote return to work recommendations. We were featured in articles by the Atlantic, CNBC, Mirror, Frontline, My London News, and Wired. We spoke on CBC Radio and Move Forward Radio. We contributed to the NHS Learning Hub, AHP Leader study day, and Sport England Guidelines on physical activity. We presented webinars for the World Health Organization, International Pharmaceutical Federation, Royal Society of Medicine, Royal Pharmaceutical Society, World Health Professions Alliance, American Physical Therapy Association, Physio Fribourg, and Chartered Society of Physiotherapy. We featured on many podcasts including AHP Leader (more than once), Medical Errors interviews, Bo Knows Stuff, the Health Space, Healthy Wealthy and Smart (Darren, Daria, Ted), the Penis Podcast, TLC Podcast, Disabled Girls who Lift, PT Meal, Long COVID Podcast, PT Pintcast, Pain Speak, and Gez Medinger. We presented at conferences including the San Diego Pain Summit, Physiotherapy UK, Michigan APTA, Irish Society of Physiotherapy, World Physiotherapy Congress, American Congress of Rehabilitation Medicine, and International Forum on COVID Rehabilitaiton Research. And we published in scientific journals including Physical Therapy, BMJ Leader, JOPST multiple times (1, 2, 3), BMJ Global Health, Physical Medicine and Rehabilitation and BMJ Open. We worked hard to use multiple communication methods to tell the world about Long COVID and spread the message about safe rehabilitation.
Our partnerships have been global and intersectional. They are what brought us joy and collective agency, through centring the voices of lived experience. Our partners are our allies and these alliances grew strong and will continue to grow in strength. We are proud to collectively represent people living with Long COVID as core participants in the UK COVID-19 Inquiry with our allies Long Covid Support, Long Covid SOS and Long Covid Kids.
Together we connected and created change. We learned from the past, we organised intersectionally, we practised and continued to learn from diversity, inclusion and belonging. We stood in solidarity for disability justice, and we envisioned a new future. Our work is not finished. The past 3 years have not been easy. We worked hard to fight the stigma, gaslighting and oppression faced by people with post-infectious chronic illnesses. But, with an incoming leadership team that is bolder, stronger and more diverse than ever, I have hope for the future and what can be achieved together.
