For people living with ME/CFS, post-COVID, or another post-acute infection syndrome, reading the experiences of others can be a source of support and recognition. Sometimes, these stories help put into words what can be difficult to explain. What was it like to become ill? What is it like to live with symptoms that profoundly affect everyday life? And what impact does this have on the people around them?
On this page, we share the personal stories of patients, informal caregivers, and healthy volunteers participating in the NMCB study. Some stories focus primarily on living with the illness, while others describe the experience of taking part in research. Often, they combine both. These stories speak of grief and uncertainty, but also of hope, resilience, trust, support, and the search for understanding. Together, they illustrate the impact these conditions—and the research into them—can have on the lives of patients and those around them.
Via the buttons below you can read the different stories