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We initiated public involvement on REACT-LC in early 2021 by inviting members of the existing REACT public advisory panel and patient activists within the Long COVID community to contribute to the study protocol. An online event in April 2021 called Let’s Talk About…Long Covid, helped establish a core patient and public advisory group (PAG) of 10 members with lived experience.

The PAG were involved in the development of the health and wellbeing questionnaire and cognitive testing for the study. We had several meetings where they informed survey design, format and style. The PAG helped us redesign the PIS and invite for the main survey to increase the diversity of respondents and achieve a 30% overall response rate. They have helped us consider how to feedback individual results of assessments in ways that was appropriate and well signposted.

The PAG helped refine the interview study topic guide, to insure it addressed outcomes that mattered to them. We fed back our initial findings for sense checking. Public advisors co-authored three peer reviewed papers on the qualitative findings.

We hosted an online Long COVID research involvement hub on the VOICE platform (Sept 2021 until Feb 2024) which brought together patients, public health professionals and researchers to co-create and share ongoing research into the long-term effects of SARS-CoV-2. via discussion forums and surveys. Public contributions helped us understand the symptoms and experiences relevant to SARS-CoV-2 outcomes for patients, leading us to develop the 'Defining Long Covid' project. 

Defining Long COVID

In 2021  we invited people to share what ongoing symptoms after COVID-19 felt like in their own words as part of our 'Defining Long COVID Challenge' on VOICE-Global. [This activity has now closed but we continue to use the responses to shape our work].

We received over 100 responses which capture the depth and breadth of symptoms experienced. One of the aims of this activity was to use these responses to raise awareness of the symptoms of Long COVID, and their impact, in a way that was accessible, engaging, and impactful. We worked closely with public advisor and illustrator to develop illustrations which visually capture the range and impact of Long COVID symptoms.

In 2022 Monique produced a poster entitled ‘What does long covid feels like?’ (see below) visualising the way contributors described their ‘fatigue’, ‘breathlessness’, ‘pain’, ‘tingling/buzzing’ and ‘brain fog’ symptoms, among others.

In 2023 Monique  developed a poster on the impacts of Long Covid to answer the question ‘What is life like with Long Covid?’. The poster is linked to a series of illustrated stories shared on our social media pages. These stories were inspired by the defining Long Covid responses as well as the REACT-LC study interviews and cover the different areas of people’s life that might be impacted by their symptoms. 

Download the What is life like with long covid poster

Download the Defining Long COVID Poster

The poster is also available to download in the following languages:

• Defining Long COVID - Arabic | Low Resolution: Defining Long COVID - Arabic
• Defining Long COVID - Hindi | Low Resolution: Defining Long COVID - Hindi
• Defining Long COVID - Polish | Low Resolution: Defining Long COVID - Polish
• Defining Long COVID - Portugese | Low Resolution: Defining Long COVID - Portuguese
• Defining Long COVID - Spanish | Low Resolution: Defining Long COVID - Spanish
• Defining Long COVID - French

Long Covid Impact Storyboards

REACT Long COVID Update Report - July 2022

Download the full report: REACT Long COVID Update Report July 2022

LONG COVID AWARENESS DAY 15th March 2024

The 15th March 2024 marks Long Covid Awareness day so we wanted to highlight the work we have been doing over last year to continue to understand this emerging condition.

Since out last report we have carried out a significant amount of data collection and begun our analysis, evidenced by a number of publications and outputs.

You can read an overview of the findings in the report but there are also links throughout to other sources and references for more information.

Download the latest report: REACT-Long Covid Update report March 2024