Australia: News from Emerge Australia

April 25, 2024

Research Digest | Issue 105

Welcome to the 105th edition of Emerge Australia’s Digest. In this month’s issue, we delve into a single-cell RNA sequencing project aimed at understanding the impact of exercise on PEM in individuals living with ME/CFS. Furthermore, we feature a review highlighting the parallels between ME/CFS and Long COVID, along with a media report emphasising the urgency for increased research into Long COVID in Australia. Be sure to take advantage of the recently implemented ‘text-to-speech’ technology for the Digest summaries – Just click the button pertaining to the summary below, and the research summaries are read to you.

Contributing Digesters: Solène, Shan and Simone.

Digest Editor: Simone Eyssens.

https://www.emerge.org.au/researchdigest/research-digest-issue-105/

https://twitter.com/user/status/1786804612684501010
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ME/CFS Awareness Week 2024 Symposium

  • 1-hour symposium. Hosted by CEO Anne Wilson and with presentations from Prof. David Putrino, Dr Mark Donohoe and Dr Steven and Tori Sommer. Each of these presenters were asked to focus on “STOP” when discussing their fields of expertise. Following the presentations, questions from some the 130 people in attendance were answered.
  • Text summary and video recording:
  • https://www.emerge.org.au/me-cfs-awareness-week-symposium-2024/
 
"August 2024 International Research & Advocacy Roundup" from Emerge Australia

https://www.emerge.org.au/news/august-2024-international-research-and-advocacy-roundup/

Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months, topics include;

· ME/CFS Awareness week recognition around the world

· The US National Institutes of Health’s ME/CFS Research Roadmap

· The Organisation for Economic Co-operation and Development (OECD) has published a report into the impact of long COVID in OECD countries.

· The US Bateman Horne Center's new videos on post-exertional malaise and staying within your energy envelope

https://twitter.com/user/status/1821889877379535354
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Carer podcasts - Season 5

For many in our community, carers make a huge difference; they are often unpaid loved ones, such as grandparents, mothers, fathers, sisters, brothers, partners, children and friends. Carers are often unseen by the community, so we are honoured to be able to share these powerful stories from carers’ lives.

The season has now concluded and included the following guests:

  • Ms. Helenni Bargiatakis - State Manager of Carer Gateway Victoria
  • Kate Baychek - carer for her bedbound, adult child
  • Lynne Harris - carer for her oldest son, who is bed bound
  • Jenny Meagher and Pete - Jenny lives with ME/CFS and they care for their adult daughter
  • Tori Sommer - carer for her husband
  • Mark Clisby - Emerge Australia Chair and carer
The latest season of the Emerge Australia Imagine podcast is currently available from wherever you listen to podcasts or via our website. Watch out for further details on socials and subscribe to the Emerge Australia Imagine podcast series. Previous episodes include an impressive array of guests from people with lived experience to clinicians, researchers, allied health professionals and media personalities, among others.

https://www.emerge.org.au/series/emerge-australia-imagine-podcast-series/
https://twitter.com/user/status/1835043971841528195
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The next meeting of the Federal Parliamentary Friends of ME/CFS is happening soon!

SAVE THE DATE! Join with us, as we work towards advancing the needs and rights of those living with ME/CFS.

️ Date: Monday, 18 Nov, 11am – 1pm AEDT
Location: Australian Parliament House, Canberra

Be part of this growing movement for real change and recognition for those affected by this disabling condition. If you would like to attend in person as spaces are limited, please register your interest here https://vist.ly/3mjmjjw

We are committed to enabling you to join online from your home, details will follow.

#MECFS #Advocacy

https://twitter.com/user/status/1849299747061764533
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Longer post from Facebook:


GPs, Did You Miss Our Live Webinars Earlier This Year?

Now is your chance to join , Dr Mark Donohoe, for a series of two RACGP CPD approved webinars as he unpacks his approach to assessment, diagnosis and management of ME/CFS.
Plus, learn how he applies his unique insights from his decades of experience to long COVID.
These free sessions will be recorded and available to view after the live event.

Topic: ME/CFS and long COVID: An evidence-based approach for General Practice
When
Webinar 1: Assessment and diagnosis 6pm, Monday 25 November, AEDT
Webinar 2: Management of common symptoms and co-morbidities 6pm, Monday 2 December, AEDT
Where: Online . Click HERE to learn more and register: https://vist.ly/3mjfi8c

These webinars are specifically developed for General Practitioners working within the Australian healthcare system.
The content may also be helpful for other healthcare practitioners, and we welcome international colleagues.

Not a GP? Please share with your GP or other healthcare professional.

Each activity is pending RACGP approval for 1.5 EA CPD hours.
Proudly supported by the John James Foundation.
 
"This is CFS Art: Chronic Fatigue Syndrome explained by artists with lived experience of ME/CFS"

https://thisiscfs.art/

Introduction from Emerge Australia e-newsletter

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It’s a cliche but it’s true: “A picture is worth a thousand words”.

People who have ME/CFS often ‘drop out’ of work, social engagements, hobbies, and their friend groups. As they are forced to stay in bed or at home, they become invisible to society at large.

This inspired Emerge Australia community member Zoe Wright to launch an online art exhibit for people living with ME/CFS to express their experiences through art and view art created by others living with ME/CFS.

Are you living with ME/CFS and express yourself through art?

https://twitter.com/user/status/1849531460379869246
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November International Research and Advocacy Roundup

Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months topics include;

US Children’s National Hospital and National Institute of Allergy and Infectious Diseases symposium “A New Paradigm: Infection-Associated Chronic Illnesses Affecting Children”

ANZMES' (Associated New Zealand ME Society) brief guide for healthcare professionals to manage hospital stays for people with severe ME/CFS or long COVID.

#MEAction and the long COVID Patient-led Research Collaborative's four videos focussing on post-exertional malaise.

World ME Alliance's Safer Hospital Care for Severe ME/CFS campaign for Severe ME Day on August 8.

https://www.emerge.org.au/news/november-2024-international-research-and-advocacy-roundup/

https://twitter.com/user/status/1862199298181509394
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Preparing for the Holidays

As we head towards a busy time of year, many in our community look for ways to manage with the limited energy they have. We also know that these times of year can be difficult for many, with reminders of what you can’t do, missing out on experiences, and challenging family and relationship dynamics.

It is for this reason that Emerge Australia has put together some information to help, including;

Planning ahead
Conserving energy
Nutrition and hydration
Emotional well-being
6 simple tips for a safer air holiday gathering

https://www.emerge.org.au/news/preparing-for-the-holidays/

https://twitter.com/user/status/1862488260796153925
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Thanks to Dolphin for noting this on the Australia news thread:

https://www.emerge.org.au/the-emerge-australia-awards-for-excellence-in-journalism/

"We are delighted to recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID.

These prestigious awards aim to reinforce the media’s commitment to these critical health issues, shining a light on the challenges faced by those affected and advocating for their rights.

By celebrating outstanding journalism in these areas, we aim to inspire further awareness, understanding, and action.

Join us in acknowledging the vital role that media plays in shaping public perception and policy, and help us honour those who are making a significant difference in the lives of so many.

Nominations open on November 1 2024, and we invite you to submit your nominations to highlight the impactful stories that deserve recognition and acknowledgement.

Nominations Open: 1 November 2024

Submission Deadline: 28 February 2025"
 
rules for the Journalism award said:
All nominations must have been published or broadcast and available in Australia in 1 January 2024 to 31 December 2024

All nominators must be Australian citizens or permanent residents of Australia

If the nominator is the author/publisher, the nominator agrees that Emerge Australia can use the material for these purposes. If the nominator is not the author/publisher, the material must be already published in the public domain to be eligible for entry.
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That's a great initiative. I wonder what piece of journalism we would pick as the best in 2024 for increasing the understanding and awareness of ME/CFS?

Edit: thread here What was the best piece of 2024 journalism for increasing understanding of ME/CFS?
 
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Support for Carers!

We’re looking forward to welcoming all carers to enrol in 2 new Virtual Support Groups coming in the first half of 2025, designed specifically for carers!

April 2025
• Carers of Adults
• Carers of School-Aged People
Tailored groups to provide support, and community for those caring for both adults and children. These groups are a safe, supportive environment where carers can share experiences, ask questions, and find connection.

Use the link below to join us as we launch these empowering groups!
https://vist.ly/3mrdd88

#CarersSupport #VirtualSupportGroups #CareTogether #CarersCommunity #SupportForCarers
 
April International Research and Advocacy Roundup


Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world in the last few months topics include;

  • The ME/CFS research program at Columbia University in the US has been shut down following the US government’s cuts to the university’s funding.
  • Solve ME/CFS Initiative and Bateman Horne Center co-hosted a series of four webinars on severe ME/CFS, the topics were (1) caregiving, (2) legal planning, (3) medical care and (4) research.
  • The Cochrane Group announced in December that, more than five years after they promised to update the Exercise for Chronic Fatigue Syndrome review, they would no longer update the review. The announcement has been met with strong condemnation from around the world.
  • #MEAction and the Patient-Led Research Collaborative published a letter calling on US Secretary of Health, Robert F Kennedy Jr, to reinstate the Long COVID Advisory Committee, which was recently disbanded.
Full piece:
https://www.emerge.org.au/news/april-2025-international-research-and-advocacy-roundup/

https://twitter.com/user/status/1909722241001988191
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Research Digest | Issue 116

Welcome to the 116th edition of the Research Digest! In this issue, we explore emerging blood-based biomarkers for ME/CFS and share findings from a study highlighting the high burden of chronic overlapping pain conditions and their impact on health and quality of life. From the long COVID field, new research links persistent spike protein in the brain to lasting neurological symptoms. We also share Sarah’s story – a personal account of how ME/CFS reshaped her life and career, and how support helped her find a new path forward.

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The search for a blood‑based biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): From biochemistry to electrophysiology
Authors: Clarke KSP, Kingdon CC, Hughes MP, Lacerda EM, Lewis R, Kruchek EJ, Dorey RA, and Labeed FH (United Arab Emirates University, UAE)
Publication: Journal of Translational Medicine
Link: https://doi.org/10.1186/s12967-025-06146-6

Easy Read Overview:
Scientists are trying to find a simple blood test to help diagnose ME/CFS early, track how it changes, and choose the right treatments. They are studying changes in energy production, immune signals, and other body processes, but results are not always the same across studies. Even though no test works perfectly yet, using a mix of different methods might lead to better and more accurate ways to detect ME/CFS.

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Chronic overlapping pain conditions in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a sample from the Multi-site Clinical Assessment of ME/CFS (MCAM) study
Authors: Fall EA, Chen Y, Lin JMS, Issa A, Brimmer DJ, Bateman L … & Unger ER (Centers for Disease Control and Prevention, USA)
Publication: BioMed Central Neurology
Link: https://bmcneurol.biomedcentral.com/counter/pdf/10.1186/s12883-024-03872-0.pdf

Easy Read Overview:
People with ME/CFS often have other painful conditions, called COPCs, like migraines and fibromyalgia. This study found that most people with ME/CFS had at least one of these conditions, which made their symptoms worse, especially for women. Managing these extra conditions may help people with ME/CFS feel better and improve their quality of life.

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Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
Authors: Rong Z, Mai H, Ebert G, Kapoor S, Puelles VG, Czogalla J,…, Ertürk A (Institute for Tissue Engineering and Regenerative Medicine, Germany)
Publication: Cell Host & Microbe
Link: https://doi.org/10.1016/j.chom.2024.11.007

Easy Read Overview:
Researchers found that the spike protein from COVID-19 can stay in the brain and may cause long-term problems. They discovered spike proteins in the skulls of mice and humans who had COVID-19, but not in people who never had it. Their experiments showed that the spike protein can cause brain inflammation and stress, which might explain why some people have lasting symptoms after infection.

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When illness forced Sarah out of work, she thought she'd be off for six months. It turned into eight years
Authors: Gleeson, H.
Publication: ABC News
Link: https://www.abc.net.au/news/2025-04...-cfs-chronic-illness-meander-valley/104847108

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Link (I only copied the quick overviews, there is more text at the link)
 
Has anyone taken a look at https://www.emerge.org.au/lea-ea-bhc/ as yet?

Emerge Australia and Bateman Horne Center: Partnering for Patient-Focused Learning.
Emerge Australia and Bateman Horne Center have joined forces to offer self-paced education modules designed to support individuals living with ME/CFS, long COVID, and other infection-associated chronic conditions (IACCs).

Bridging expertise from Australia to the United States, these modules provide practical tools for managing PEM, pacing, and orthostatic intolerance, while offering caregivers and clinicians valuable insight into the lived experience and support needs of patients—working together to elevate the standard of care worldwide.

What You’ll Find in These Modules.
  • Gentle guidance to help you better understand your unique illness experience.
  • Tools to develop a pacing plan that can reduce the frequency and severity of PEM.
  • Practical strategies for modifying, delegating, or adapting activities.
  • A supportive framework for rest and recovery that respects your energy limits.
  • Resources to help patients, caregivers, and clinicians work together.
These modules are fully self-paced and can be paused and resumed as needed. We encourage you to work within your energy limits, listen to your body, and treat these resources as supportive tools.
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Promoted in the Emerge Australia enewsletter dated 6th May as follows:
International Collaboration in ME/CFS & Long COVID Education
We are thrilled to share that Emerge Australia and Bateman Horne Center are partnering to strengthen global efforts to support patients with ME/CFS, long COVID, and other energy limiting conditions.

We have developing co-branded, self-paced learning modules grounded in the lived experience of patients and designed to help individuals:
  • Understand their PEM experience and triggers
  • Recognise symptoms of orthostatic intolerance (OI)
  • Create a patient-cantered pacing plan for everyday life
These modules are developed by healthcare professionals in collaboration with people who have lived experience — but can also help health and support professionals identify opportunities to support accommodation and everyday living.
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  • 1.Guidelines - breif for poeple who are energy limited
    • Guidelines - brief for people who are energy limited
  • 2.Guidelines - complete
    • Lean with Emerge Australia and Bateman Horne Centre guideline
    • Lean with Emerge Australia and Bateman Horne Centre values
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A bit of proofreading is needed.

I've just watched two videos that are part of the Back to Basics section:

Mito from the Bateman Horne Center.
This is an extended broken battery metaphor. It's an animation narrated by Mito.
I don't think I'm the target audience for this, not even if I had just developed ME/CFS. It seems to be aiming to educate the friends of young people with ME/CFS. It is probably okay-ish for that.
I forget how long it is - maybe 8 minutes.

The basics of ME/CFS and its similarities to Long Covid, by Emerge's Kate Herbert
Kate is a nurse and has ME/CFS herself. She has a nice voice and comes across well as she speaks to a set of powerpoint slides.
This video is close to half an hour. It is a version of a presentation to health professionals about the similarities between ME/CFS and Long Covid, modified to educate someone with ME/CFS.

The biggest issue is a very common one in ME/CFS resources - the overclaiming of what is known about the pathophysiology. I get that it is really tempting to mention stuff like 'dysregulation of the hypothalamic/pituitary axis' while talking about neuroendocrine disruption, and saying that 'new imaging shows widespread neuroinflammation'. But, it doesn't help. Someone in Emerge needs to try to stop their staff doing this. @Simone

Another common issue is getting things about Long Covid wrong.
It is noted that 'recent research reported that at least 45% of Long Covid patients will meet diagnostic criteria for ME/CFS'. I don't think we have yet seen really good studies on this, so it would be better to just talk about a significant percentage. There didn't seem to be an understanding that Long Covid is lots of different things, happening after Covid-19. Because Long Covid is that general umbrella label, it does not makes sense to have that table comparing ME/CFS to Long Covid.

There was more going beyond what is really known
e.g. PEM is 'going beyond cellular energy capacity' and it is described as 'multi-system and physiologic'
e.g. 'impaired aerobic energy system'
e.g. CPETx2 is described as the gold standard for measuring PEM, when it does not measure PEM at all.

There's quite a lot of good material, and I think it will do more good than harm.
 
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At the end of watching those two videos, you are asked to complete a survey. The questions are very leading - to positive responses about how the information has helped you, who you will recommend it to. At the end there is an open entry section, but they only ask for positive responses. There is a place to tick to allow your responses to be used on social media.

I felt uncomfortable with that survey - they did not ask for comments about how the material could be improved. So, it comes across as rather patronising and self-serving. There does not seem to be a recognition of the possibility that they may not have got it all right yet.
 
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