We are so pleased to announce that we have now published the 2018 Emerge Australia Health and Wellbeing Survey!
You can download a full copy of the 77 page survey here.
The survey, carried out in conjunction with ASDF Research, highlights the need for greater understanding of ME/CFS, which is estimated to affect 1 in 100 Australians, and the way it is diagnosed and treated.
Despite compelling scientific evidence that ME/CFS is a serious, complex, acquired, multi-system disease, there is serious underfunding of biomedical research, treatment and support for people with ME/CFS in Australia.
Key findings were that most ME/CFS sufferers stated that they felt worse after increasing exercise and/or activity (89%). 54% reported feeling worse straight away, while 35% reported feeling better initially, but worse later. Very few (5%) reported that increasing activity or exercise helped them feel better.
We therefore think that this survey highlights the need for a very precautionary approach to all exercise and activity for ME/CFS sufferers, including Graded Exercise Therapy (GET), in order to minimise the risk of Post-Exertional Malaise (PEM) and symptom worsening.
Another key finding of the survey is the need for further education of GPs on the topic of ME/CFS. There is a clear disconnect between what patients say helps and what GPs and specialists are recommending. 44% of respondents rated their GPs level of being informed as poor/very poor, 29% rated their GP as unsympathetic/very unsympathetic, and 42% rated the service provided by their GP as poor/very poor.
In terms of the impact of ME/CFS on sufferers’ lives, 46% reported they were mostly housebound or bed-bound. 74% said the condition had a strong impact on, or stopped, their participation in paid work and 34% of respondents indicated they had no income.
We will be carrying out a follow-up survey in early 2019 – if you would like to be informed of when our new survey is available please sign up here.