One of the ways we ensure that the patient voice is heard and put at the centre of the project in all its stages is by having monthly meetings with representatives of several patient
s organisations in the IDEA-FAST Patient Engagement and Involvement group. Last month, we have welcomed LUPUS UK on board of our group.
Paul Howard, Lupus UK chief executive states that “We are very pleased that LUPUS UK has been invited to contribute to the patient engagement and involvement group for the IDEA-FAST project. Approximately 90% of people living with lupus report experiencing fatigue as one of their symptoms. It is also commonly reported, alongside pain, as a symptom that has the most detrimental impact on quality of life. Despite this, there has been very little research to understand the mechanism of fatigue in lupus and it remains very difficult to provide effective interventions. We know that fatigue is often multi-factorial with disease activity, sleep quality, mental health and other causes all having a role. The more that we can understand about fatigue in lupus, the closer we get to developing effective interventions that can improve quality of life for so many people. This is a very high priority for our patient community.”