Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neurologic disease. Between 0,1-2,6% of the world’s population is estimated to have ME/CFS. Even though a lot of people are affected there is a lack of knowledge about the disease. Its symptomatology affects the whole body and is severely debilitating. It’s at utmost importance that this subject is studied so that nurses can get an increased knowledge about ME/CFS. Aim The aim was to highlight people's experiences of living with ME/CFS. Method A literature-based study based on analysis of ten qualitative scientific studies was performed. Results Four main themes and fourteen subthemes were revealed. The main themes were about changing living conditions, lack of knowledge, changes in the body and existential changes. Changes were a major part of the result and people with ME / CFS experienced that the changes could be both positive and negative. The results showed that there is a knowledge gap regarding ME / CFS, which has serious consequences for people with the diagnosis. Conclusion The conclusion of the study was that knowledge, information and support is important for people with ME / CFS. By working person-centered, the nurse can help people with ME / CFS feel better.