Thank you to all those who joined Emerge Australia, on Tuesday 14 May, for our online symposium marking ME/CFS Awareness Week in 2024. With over 350 registered attendees, this was our largest symposium to date.
With the theme of “Don’t Push. STOP. Rest. Pace”, the symposium was opened by CEO Anne Wilson and a lovely rendition of “True Colours” by ambassador Bloom.
Each of the three presenters were asked to focus on “STOP” when discussing their fields of expertise. Professor David Putrino, Director of Rehabilitation Innovation, ICAN School of Medicine, Mount Sinai discussed the power of stopping the harmful and incorrect prescription of GET and CBT, noting that the only people still supporting these as treatments or “cures” for ME/CFS are those who stand to benefit financially.
Decades of bad, government sponsored science has plagued the ME/CFS community, with the prevailing thinking incorrectly urging people with ME/CFS to “overcome” their disease with positive thinking. Professor Putrino advocated for all of us to keep reiterating the problems with GET, and to keep telling people it’s the wrong way to manage this disease.
Finally, Professor Putrino presented some of the research about ME/CFS and why Stopping is the best way to avoid a crash. He also shared some exciting new research and data about the crash prediction algorithm he has been working on and testing. This algorithm uses physiological biomarkers – heart rate and heart rate variability – to predict when someone will have a crash with an 80% success rate.
Next, Dr Mark Donohoe, GP, Founder and Director of Mosman Integrative Medicine discussed the importance of “Stop” in General Practice. For Dr Donohoe, stop means we need to stop certain things going on – like Graded Exercise Therapy – otherwise we can’t stop the rollercoaster people with this disease and their families are on.
We have lost the art of convalescence, with the prevailing message patients receive being that “if you tried harder, you would do better”. Dr Donohoe would like STOP to be something that Doctors can prescribe, and for this need for rest to be respected. As a civilised society, we believe we care for sick people. However, Dr Donohoe said, we have to stop the barriers that are erected – like NDIS bureaucracy and the annual face to face rule for Medicare rebates – to helping people who are unwell. He observed that every time money is short, it is the people who can’t easily prove their illness who suffer the most.
Dr Donhoe left us with three final points about what needs to stop:
- STOP the gaslighting so patients stop feeling guilt and blame
- STOP the GET now. Forever. For good.
- STOP the madness – the wasteful madness, that he has witnessed over the past 40 years of General Practice.
The final presentation was from Dr Steven Sommer and his wife and carer, Tori Sommer. Dr Sommer is both a GP and a person who lives with ME/CFS. Dr Sommer discussed his approach of Micro-rehab a form of individualised pacing – as a way of stopping and restoring the mind/body trust connection. The aim of rehabilitation is to improve function, not about curing a disease, and it can make a big difference to people’s capacity and function.
If the person with ME/CFS wants to try this micro-rehab, Dr Sommer described a number of factors that should be considered including starting where you’re at, accepting this and not pushing to goals, working with knowledgeable practitioners, learning when to STOP, banking your energy gains, taking tiny steps, prioritising and monitoring progress.
Dr Sommer provided his own example of micro-rehab, where he started with 20 seconds of activity per day, constantly working within his own capacity and not pushing beyond his limits. Another important component of Dr Sommer’s micro-rehab is mindful rest, which he described as a meditative process, followed by mindful stop, rest, pace.
These informative presentations were followed by a number of questions Anne Wilson directed to the panellists. Of particular interest was more information about Professor Putrino’s research and the availability of the technology in Australia. Professor Putrino shared that Post-acute Infection Syndromes are dynamic illnesses and no “treatment” is going to work in an easily traced way. This is where continuous monitoring devices can help. So often people have been told their test results are normal, but when his team has used the right tools – they have found anything normal in the results of people living with ME/CFS. The three tools he uses are:
- Autonomic nervous system testing – eg. tilt table
- Resting metabolic rate testing – as a proxy for mitochondrial dysfunction
- Endothelial testing.
If you would like to watch the full recording of the Symposium it is available below. The presenters slides and references, where available, will be uploaded soon.
You can hear more from Professor Putrino when he presented at the “Shining a Light on Recommendation 8” Roundtable – available here.
You can hear more from Dr Donohoe when he presented at the “Shining a Light on Recommendation 8” Roundtable – available here.
You can hear more from Tori Sommer when she presented at the “Shining a Light on Recommendation 8” Roundtable – available here.
Please enjoy the word cloud created from what community members said in the chat and from the presentations.
