What does Long Covid mean to you?

4th February 2022

Woman lying in bed with mug

Since the pandemic began, people have been reporting that they have continued to experience symptoms for weeks or even months after infection. This can range from mild symptoms all the way to debilitating symptoms that have a major impact on people’s lives. This condition is now described as ‘Long Covid’ – but there is currently no set definition of what constitutes Long Covid, even as more and more people develop the condition.

TwinsUK is part of a multi-university study called CONVALESCENCE, which aims to understand, define and improve diagnosis of Long Covid. There are many parts to this project, and more information is available here.

As part of this research, we want to hear what Long Covid means to you. To facilitate this, the CONVALESCENCE team have created an online discussion forum. The aim of the forum is to ensure that a wider cross section of public and patient perspectives are included in discussions about how to define Long Covid and in the broader research. 

The forum is hosted on the People in Health West of England (PHWE) Discourse Platform. The platform works in a similar way to social media you may be familiar with such as Facebook. Your input will help in shaping how we progress the research going forward.  

The Long Covid forum space is public. Public forum areas on the Discourse platform can be viewed by anyone, but only people that have created an account can reply. 

If you would like to contribute to the development of this research as a public contributor, you are welcome to join the conversation by creating an account.  

Click on this link to view the public forum space dedicated to discussing how we should define Long Covid, and register for an account if you would like to participate in the conversation. Click here for a short guide to the forum. 

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