Australia: News from Emerge Australia

Diagnostic Criteria Position Statement

Ends:
While research requires stringent diagnostic criteria to ensure homogenous participant samples, the CCC and ICC are complicated to use and haven’t been widely adopted in clinical settings. For clinical settings, the NAM criteria are recommended by the US Centers for Disease Control and Prevention (CDC), as they were developed for clinical use and are straightforward for busy clinicians who are not experts in ME/CFS11.

https://www.emerge.org.au/diagnostic-criteria-position-statement/
 
The Emerge Australia Research Digest (099)

28/9/2023


In this 99th edition of the Research Digest, we highlight the discovery of WASP3, a key protein linked to exercise intolerance in ME/CFS. We also explore the use of health survey tools to better convey the burden of ME/CFS in Australia. Additionally, we delve into the analysis of plasma samples, identifying promising metabolites for diagnosing Long COVID. The digest concludes with personal accounts from individuals affected by ME/CFS, echoing Anne Wilson's (CEO of Emerge Australia) call to action to address the healthcare system's oversight of ME/CFS patients.

https://www.emerge.org.au/researchdigest/research-digest-28-9-2023/

https://twitter.com/user/status/1707847463040635298

https://twitter.com/user/status/1707847780343960048
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Recently I was interviewed for Emerge’s new podcast series. I was asked about my life with ME/CFS, what I’ve learned, and how I cope. I did my best to represent the lived experience of ME/CFS, and the challenges we face.

The interview took its toll, as was expected. At the time, I posted on FB about how the interview hadn’t captured that toll, and a few friends encouraged me to try to capture it somehow. So I recorded a short addendum about the aftermath, in what I call my “PEM voice”. It’s so rare that this side of our condition is shown that I think the interview is valuable even if just for the addendum.

If you have the spoons, please listen and, if you like it, please share the episode :)

https://www.emerge.org.au/podcast/episode-4-simone-eyssens/
 
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Excellent podcast. Highly recommend. Thanks @Simone. Hope you're feeling a bit less awful by now. That PEM voice at the end made me quite emotional. I suppose that shows how rarely even we witness other pwME when they're unwell. I hope it makes a similarly big impression on people without ME and helps them understand a bit better

I did get a sense Anne was at times trying to steer you towards presenting as that caricature of the positive patient full of hope & resilience but you nuanced that picture very well I thought. And your cordial analogy for illustrating genuine hope is helpful, too, though I now may have to reconsider my intense dislike for cordial, the real-world (un)drinkable stuff that is
 
Ravn said:
Excellent podcast. Highly recommend. Thanks @Simone. Hope you're feeling a bit less awful by now. That PEM voice at the end made me quite emotional. I suppose that shows how rarely even we witness other pwME when they're unwell. I hope it makes a similarly big impression on people without ME and helps them understand a bit better

I did get a sense Anne was at times trying to steer you towards presenting as that caricature of the positive patient full of hope & resilience but you nuanced that picture very well I thought. And your cordial analogy for illustrating genuine hope is helpful, too, though I now may have to reconsider my intense dislike for cordial, the real-world (un)drinkable stuff that is
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Thanks, Ravn. I’m glad you liked it. The interview was recorded a few weeks ago, so I’ve recovered now. :)

I included the PEM voice addendum because I thought it would be useful for non-MEeps to hear the real impact of exertion on us. Lots of patients told me it made them cry. I think because we are all so alone in our PEM, we don’t experience anyone else’s PEM but our own. Hopefully including my PEM makes it a bit more of a shared experience.

There were certainly some tricky bits in the interview for me, especially as Anne is my boss!

I hoped that the cordial analogy would resonate, and not feel twee. It’s an analogy I used to use with clients back in the day. I wanted to find a way to talk about hope without it being Pollyanna or glossing over the real challenges we face. I think we could’ve had a whole podcast on the issue of hope in this life.
 
Andy said:
"While estimates of how many people have ME/CFS vary, it is thought that around 0.4-1% of the population is affected. This means that up to 250,000 Australians have the condition."

https://www.emerge.org.au/what-is-mecfs/

Up to 1%??? Do we know that Australians are particularly likely to develop ME/CFS?
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Good point. The studies that I can remember of Australians with me/cfs point to 1/500 (50,000) incidence. It worries me the last few years that emerge keep quoting that 250,000 figure.
 
https://www.emerge.org.au/podcast/episode-5-professor-paul-fisher/

Emerge Australia CEO Anne Wilson is in a very special conversation with Emeritus Professor Paul Fisher, former Head of Microbiology, Department of Physiology, Anatomy, and Microbiology, La Trobe University – whose research interests include the study of neurodegenerative disease, mitochondrial biology, Parkinson’s disease and the roles of mitochondria in disease. Of particular emphasis for us is Prof. Fisher’s dedication and focus in studying blood plasma, white blood cells and mitochrondria from ME/CFS patients.

Paul is Chair of Emerge Australia’s Medical and Scientific Advisory Committee, where his leadership helps shape our research priorities. His ground-breaking work is widely published, recognising ME/CFS as a complex and debilitating disease with a substantial social and economic impact on individuals and their communities. In this podcast, we learn about the genesis of Professor Fisher’s interest in ME/CFS, his incredible commitment, and why he is such a key champion for our mission.
https://twitter.com/user/status/1710037110445453517
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https://www.emerge.org.au/podcast/episode-3-dr-mark-donohoe/

Anne Wilson is talking with Dr. Mark Donohoe, who graduated from Sydney University in 1980, and opened his medical practice on the Central Coast of New South Wales in 1983, where his patients led him into the fields of Environmental Medicine and Nutritional Medicine.

He has been awarded fellowships from the Australian Society of Environmental Medicine (ASEM), the Australasian College of Nutritional and Environmental Medicine (ACNEM), and more recently the Australasian Society of Lifestyle Medicine (ASLM).

With over 40 years in practice, Mark has specialised in ME/CFS along with environmental and occupational toxicology, and sensory sensitivities, including multiple chemical sensitivity. He works with his wife, Fiona, at Mosman Integrative Medicine in Sydney, and while he focuses on the causes of illnesses and diseases, Fiona manages the healthcare side of the practice where she and other natural healthcare practitioners provide consultations and classes in yoga, Qi gong, pregnancy yoga, meditation, mindfulness, and movement.

Mark and Fiona work together with an underlying philosophy that health in all its forms is the best prevention of disease, and that most disease is best managed by clean air, clean food, clean water, and a commitment to a diet and lifestyle that are health-enhancing. This is a fascinating and enlightening conversation about a lifelong commitment to community health and wellbeing.

https://twitter.com/user/status/1704992537793147139
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Podcast Episode 6 Lynne Harris:
This conversation, hosted by Anne Wilson, is with the extraordinary Lynne Harris, who has been caring for her oldest son, who has just turned 34, for over 3 years. Prior, Lynn was a full-time junior primary teacher. She had to change her life as a mother of two in order to provide the 24/7 nursing home care that her son’s medical team ordered. He should be at the peak of his working life—building wealth and raising a family—but he is unable to do any of these things.

In fact, he is unable to do anything for himself—unable to feed himself, hydrate, wash, or use the toilet. He can’t interact—he can’t tolerate any interactions. As Anne speaks with Lynne, he is in the midst of a flare-up—he is barely tolerating Lynne in the room; he can’t tolerate being touched, moved, or spoken to. Lynne and her family’s lives have been changed beyond belief; they are on a never-ending rollercoaster, with no end in sight, in a sea of the unknown, with the unknown terrifying. A not-to-be-missed heart-wrenching and gritty conversation: thank you for all you do Lynne; thank you to all carers, from the bottom of our hearts.
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https://www.emerge.org.au/podcast/episode-6-lynne-harris/
 
https://www.emerge.org.au/news/abc-...cuating-in-a-disaster-is-dauntingabc-article/
ABC Article: For People Like Kate Who Live With Chronic Illness, The Thought Of Evacuating In A Disaster Is Daunting

Published: 19 November 2023
Emerge Australia’s Nurse Educator Kate Herbert spoke with the ABC about the inclusivity of people living with a chronic illness, such as ME/CFS, are neurodivergent, or have a disability, in future disaster and severe weather event plans.

Ms Herbert wants to start a conversation about how people who fall into those categories can have their needs met before, during and after an emergency.

“Twenty-five per cent of people with ME/CFS are house or bed bound and their choices might be between having a bird bath at the sink and eating a meal … they may not have the energy to eat even if someone brings them food,” she said.

“It’s like a battery which is always low, it drains much faster and it doesn’t recharge quickly.”

New research by community organisations Australia reMADE and Women’s Health Goulburn North East has found a need for a new approach to disaster that prioritises care for everyone.

Australia reMADE Co-Director, Millie Rooney, led a research team in community conversations with people in the Goulburn Valley region and north-eastern Victoria – where the population had endured the Black Summer bushfires, the 2022 floods and the global COVID-19 pandemic in recent years.

“We found there is a need for people to be seen, safe and supported during and after a crisis, and that their communities already need to be strong and connected before disaster strikes for this to occur,” Dr Rooney said.

“Inequality exacerbates the impact of disaster, so if we address that before disaster then we have less work to do in recovery.”

Read the full article ABC here
https://twitter.com/user/status/1743393119490499063
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Imagine. The Emerge Australia Podcast

The Emerge Australia podcast continues this year with CEO Anne Wilson having deep and interesting conversations with clinicians, researchers and experts in the field of ME/CFS.

https://www.emerge.org.au/series/emerge-australia-imagine-podcast-series

Our guests this season include:

Dr David Systrom MD, Co-Director, The Ronald G. Tompkins Harvard ME/CFS Collaboration
Dr Alain Moreau, Director of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network
Dr Elizabeth Unger MD, PhD, Centers for Disease Control and Prevention
Prof Tony Komaroff MD, Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical School Senior Physician, Brigham and Women’s Hospital
Chris Armstrong PhD, Research Fellow The University of Melbourne Faculty of Medicine, Dentistry and Health Sciences
Dr Lucinda Bateman MD, Founder and Medical Director Bateman Horne Centre of Excellence

https://twitter.com/user/status/1760023133329702987
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