UK ME/CFS Biobank continues to learn from research participants
In early July, we were delighted to welcome nearly thirty Biobank participants to two discussion days held in London and Norwich. We presented some of our preliminary research, and after a delicious lunch, participants had the chance to respond and react to the research presentations in a series of group discussions. About two thirds of those attending had ME/CFS and the rest had MS. We hope to present the data from the group discussion that were part of the meeting in a research paper later this year. In the meantime, we will use the valuable ideas that research participants shared with us to inform our work going forward.
Below is an example of one of the posters that we shared with participants. Dr Vageesh Jain worked with us last year and his work was published in BMC Neurology in June.
The days built on our previous discussions with people with ME/CFS, including those that helped to guide the establishment of the UK ME/CFS Biobank. The UK ME/CFS Biobank is a leading advocate of participant-driven research – we believe that patients are among those best-qualified to make sense of scientific findings and help shape the research agendas of the future.