Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
Despite compelling scientific evidence that ME/CFS is a serious, complex, acquired, multi-system disease, there is significant underfunding of biomedical research, treatment and support for people with ME/CFS in Australia.
Emerge Australia’s new survey provides credible, hard evidence of the terrible impact that ME/CFS has on the lives of patients and on those caring for them.

• 46% of patients surveyed report that they are mostly bedbound or housebound.
• 57% of those who had a full-time job prior to becoming unwell were unemployed at the time of completing the survey.
• 74% said the condition had a strong impact on, or stopped, their participation in paid work.

In addition to this, patients and their carers are not getting a fair go from doctors or the health system:

• 44% of respondents rated their Doctor’s level of being informed as poor / very poor.
• 42% rated the service provided by their Doctor as poor / very poor.
• 80% reported that it took a year or more for them to receive a diagnosis.

An additional key finding was that the vast majority (89%) of ME/CFS sufferers stated that they felt worse after increasing exercise and/or activity:

• 54% reported feeling worse straight away.
• 35% reported feeling better initially, but worse later.
• (just) 5% reported that increasingactivity or exercise helped them to feel better.

This finding adds urgency to Emerge Australia’s call for the Australian clinical guideline to be updated, which currently recommends Graded Exercise Therapy as a treatment.
Read the full report on Emerge’s website:
https://emerge.org.au/emerge-australia-health-and-wellbeing-survey-2018/