Introduction to the survey

We lack knowledge about the course of illness and prognosis for ME. (ME/CFS, CFS/ME or CFS may be used in your country). This survey aims to gather information on the ME patients' experience with the illness and what impacts positively or negatively on the course of illness.

Knowledge about course of illness and prognosis may help inform policy decisions and the health and social care provided. 

The survey is administered by the Norwegian ME Association. We have implemented several patient surveys over the past decade, most recently two similar surveys on the course of illness: one in Norway and one throughout Europe. You can read more about us and the surveys here. 

The survey is open for anyone with an ME, both those who have a diagnosis, those who are under assessment for an ME diagnosis, and those who suspect they may have ME.

Carers may answer on behalf of patients who are too ill to complete the survey themselves.

The survey is completely anonymous, and it will not be possible to identify individual respondents.

We hope that as many as possible take time to answer! We know answering surveys require a lot of effort, and we greatly appreciate that patients and carers use valuable time and energy on answering.