Prepared For: Emerge Australia (formerly ME/CFS Society Australia (Victoria))
by Rebecca Bishop, Monash University
The purpose of this research is to gain an understanding of the levels of social connection and isolation. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disease that causes fatigue and severe limitation on activity and therefore this research has been done to discover if the people living with ME/CFS are socially isolated due to this. This is important as ME/CFS is widely not recognised among medical professionals and is often misdiagnosed as a mental illness not a biological disease (Carruthers, et al., 2003).
This research was done via an internet based survey and comprised of 46 questions that were a mixture of open and closed ended types, this accounted for the fact that qualitative research could not be done as it would be too arduous for the people who have ME/CFS. The survey was chosen as the respondents could complete it in their own time and stop and re-start it when they wished.
The results from the survey revealed that there is a high level of social isolation among the people living with ME/CFS; there were a number of reasons identified for this. One reason for social isolation was that family and friends had a limited understanding of the condition and were therefore not supportive. Many people had to cease work or studying at some stage of their illness as they were too sick or disabled to continue which caused a loss of social contacts and future goals. Finally the debilitating nature of the illness caused the people living with it to be unable to get around and interact with others and society. This research found that social isolation was a problematic issue for people with ME/CFS and it was causing them to feel depressed and crating further disability.