The survey, carried out in conjunction with ASDF Research, highlighted the need for greater understanding of ME/CFS and the way it is diagnosed and treated. You can download a full copy of the first Health and Wellbeing Survey 77-page report here.
A key finding was that most respondents stated they felt worse after increasing exercise and/or activity (89 per cent). 54 per cent reported feeling worse straightaway, while 35 per cent reported feeling better initially and then worse later. Very few (5 per cent), reported that increasing activity or exercise helped them feel better.
The survey demonstrated the need for a 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 was the need for further education of general practitioners (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 per cent of respondents rated their GP as having a poor/very poor understanding of ME/CFS, 29 per cent rated their GP as unsympathetic/very unsympathetic, and 42 per cent rated the service provided by their GP as poor/very poor. In response to these results, Emerge Australia partnered with accredited education developer ThinkGP to develop a GP education module on ME/CFS, which was released in August 2019.
Emerge Australia is currently raising funds to develop a second GP Education module. You can access resources to promote the module and/or give to our appeal to raise funds for further modules here.
In terms of the impact of ME/CFS on sufferers’ lives, 46 per cent of survey respondents reported that they were mostly housebound or bedbound. 74 per cent said the condition had a strong impact on, or stopped, their participation in paid work and 34 per cent of respondents indicated that they had no income.