Patient and Public Involvement

Our group of patient partners has been actively involved in the TLC study since its inception.

To date, they have contributed to the development of our new Symptom Burden Questionnaire for Long COVID questionnaire, as well as inputting to the initial grant application, patient-facing documents, testing our ePRO platform, advising on recruitment strategy, and dissemination plans. Lately, they have taken a more leading role in the co-production of the feasibility study. In addition to attending weekly team meetings, they have been involved in the design of the feasibility study, reviewed and selected 3 pacing interventions which will be used while advising the team on living with Long COVID. They have just recorded a series of videos of living with Long COVID, sharing their tips on how they adapt to their new life.

Some of our patient partners have been in the media recently to share their experience of living with long COVID:

  • ITV News: 'Real pay slumps as businesses struggle to find workers'