https://www.emerge.org.au/health-and-wellbeing-survey-2019 https://twitter.com/user/status/1312166417848918016
https://www.emerge.org.au/health-and-wellbeing-survey-2019-for-medical-practitioners https://twitter.com/user/status/1312169605016612864
Did a Twitter summary/highlighting of interesting results: https://twitter.com/user/status/1312676278709952512 2) The largest group of participants (30%) experienced their first symptoms between the ages of 11–20 3) Only 6 per cent of respondents said they had experienced a significant improvement in their symptoms over time. Caveat: members of EMERGE and respondents to this survey may not be representative of ME/CFS patients in Australia as a whole. 4) 89 per cent of respondents significantly reducing their working hours or stopping altogether. Adjusted for those aged 18–64, results showed that 49% of working age respondents were not engaged in work, training or education when taking the survey, in contrast to 3% prior to onset. 5) One of the saddest figures from the survey: 73% of respondents reported an income of $25,999 or less, indicating that the vast majority of participants is living below the poverty line. 6) Another remarkable figure: Almost 80 per cent of respondents said they spent money on alternative therapies and supplements to manage their ME/CFS symptoms. 7) Asked to rate their GP’s knowledge of ME/CFS, almost half (48%) of respondents said they were poorly or very poorly informed. Healthcare providers lack of knowledge about ME/CFS was considered the largest barrier to accessing services. 8) When asked ‘what would improve your healthcare experience?’ respondents pointed at home visits of healthcare professionals, telehealth consultations, better info on self-management etc. The most important thing however was better informed doctors.
I'm actually surprised the numbers of below poverty are that low. I'm pretty sure there's an undercount of the worst off and that this is basically an optimist version. Turns out the currency exchange rate for "attention" is... zero. Just straight up zero. Who knew? Other than everyone, obviously.