“…The focus is also on health-related behaviour and resources and processes, such as illness-related distress and adaptation, where the aim is constructive adaptation to the circumstances of one's life and maintaining and improving one's functional capacity as much as possible. [13][14][15][16][17][18][19][20][21][22][23][24][25][26][27][28] In society and especially in the health care system, ME/CFS patients continue to face an illness that is a misunderstood and its existence even denied. 6 Desired and needs-meeting support, such as information about the diagnosis, respect, empathy, and support from healthcare workers, and social benefits, tools for rehabilitation, illness management and adjustment, are lacking, leading patients to turn to self-care and resources they find in patient networks.…”