People with Long Covid are keen to speak to investigators, innovators and service providers at the very earliest stage. We believe that patient involvement is crucial to the development of effective research, innovations and services.

Please join our community via the Covid-19 Research Involvement Group on Facebook.

You are welcome to write posts to invite people with Long Covid to become involved in research or service development, or participate in research, or simply to highlight relevant research or services. Please note, the group is for the purposes of research or publicly funded service development, it is strictly not for the sole purpose of business promotion.

We have written to the Principal Investigators of the research projects who were recently granted funding by the NIHR, offering to provide patient involvement in their research. A copy of the letter can be viewed here.

We recommend that investigators, innovators and service providers work within one of the existing frameworks for involvement, such as:

Further useful resources are:

If you would like to speak to us about public involvement we would be really happy to hear from you. Please email and we will be in touch.

An up to date list of the research projects that our members are involved in - either as co-applicants, PPI partners or patient participants, along with a list of research papers and journal publications can be accessed here.

Members of Long Covid support were also recruited for public involvement in the NIHR reviews via our Covid-19 Research Involvement Group

Please see the COVID-19 Research Project Tracker by UKCDR & GloPID-R for a live database of funded research projects on COVID-19 that will help funders and researchers identify gaps and opportunities and inform future research investments or coordination needs.