What are the next steps for Long COVID research?

What are the next steps for Long Covid research? That was the question on the lips of more than 400 health professionals and members of the public who attended a patient-led Long Covid webinar hosted by CRN North Thames and co-created with charities Long Covid Support and Long Covid Scotland. 

Entitled ’Long Covid - what needs  to happen next?’ the speakers focused on assessing the current state of research and long-covid services, to debate what needs to be done to develop and move these forward. An integral feature of the event was that it was co-created by people with Long Covid. 

Held over two days, on 5 and 6 July, the event featured a broad and diverse group of speakers. Attendees heard from Long Covid researchers and a wide array of clinical specialists from the fields of neuroscience, cardiology, respiratory disease, primary care and pharmacology. Long Covid patient experts who have both first-hand experience of living with the condition, and have co-created research, also gave presentations, alongside representatives of The Trades Union Congress (TUC), Medicines and Healthcare products Regulatory Agency (MHRA) and The National Institute for Health and Care Excellence (NICE).   

Day one of the event focused on clinical pathways, specialist clinics and services in Primary care. Speakers also gave insights into the clinical pathways for Scotland and experience of services in Wales and Northern Ireland. Barriers to research and the lessons learnt were explored, interspersed with Q&A sessions for those attending.  

The broad scope of the event enabled discussion of factors that are sometimes overlooked when considering Long Covid’s impact. The economic effect on sufferers and the economy were explored on day two of the event, as were the implications for those in paid employment.

Presentations from patients on both days showcased patient-led research and insights from lived experience - aligning logistical and clinical discussions with real-life experience and giving some enlightening insights from a patient perspective. Every session was chaired by both a person with Long Covid and a professional.  

The event concluded with a panel discussion between experts, including patient experts, which highlighted agreement over the need for speeding up processes in funding, NICE accreditation of drug ‘re-purposing’ and more rapid updates to guidance as new evidence emerges.       

The event was held in partnership with charities Long Covid Scotland and Long Covid Support, which advocate for people living with the condition.

Margaret O'Hara of Long Covid support said: 

It's been a pleasure to partner with North Thames Clinical Research Network to create this event. Our aim was to highlight issues that people with Long Covid face in seeking to access quality services, and the urgent need for research into treatments. Importantly, we wanted to discuss how to improve things. The event highlighted up to date evidence about the massive negative impact that Long Covid is having on individuals and society. Feedback has been overwhelmingly positive - people with Long Covid found it empowering and motivating to hear said out loud what we have been discussing in private forums for over three years. We hope to use the outputs of the event to focus our advocacy efforts for the benefit of people with Long Covid.

Attendees at the event provided feedback, including these:

"Thank you all for your hard work in making visible these issues, it's so refreshing to have these acknowledged and addressed"

“I was very struck by the webinar co-creation involving people with lived experience, practitioners from all sorts of university and healthcare - primary and secondary - disciplines from all 4 nations” 

"Thank you for such an invaluable event and the honest discussion. I really hope this can be the start of more events possibly providing real solutions (especially non-pharma based). It may also set a more functional approach to inevitable future pandemics."

High praise feedback was also received for the speakers:

"Rae Duncan, thank you so much !!!!!!! I wish I could have seen you somewhere in my clinical encounters of the last three years. But just hearing what you have said, for us, with passion, has got down under my Long Covid/M.E huge fatigue this day and has made me feel heard, seen and spoken for, at volume, by everyone out there who you have the power to influence."

And also:

"Trisha, I just wanted to say it's so great to hear someone speak with such understanding of the real challenges for patients. You have made me feel very seen and having someone with such passion in our corner has lifted the session into optimism rather than just focusing on the challenges." 

More details of the event, with recordings of the sessions, are available, on YouTube.