Australia: News from Emerge Australia

Emerge said:
You can learn more about PEM and pacing in our short, ten minute talk "Top ten tips for PEM".
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I thought this wasn't too bad, it's probably not going to be harmful. However, it isn't really focussed on PEM, there's more content on pacing. If I didn't know what PEM is, I don't think this presentation would help me understand, so I can't recommend it as a resource on PEM.

In the first slide, it is said that 'in a 7 month long study, 90% of those who had had Covid-19 reported experiencing PEM'. I really doubt that all of those people had PEM.

There is a feeling of 'medical professionals know best'. For example, when talking about pacing, the presenter says 'usually patients need to be taught it'. I don't think that is true, I think most people with ME/CFS will find their way to some sort of pacing quite quickly. Life is just too brutal and unworkable otherwise. Yes, possibly a medical professional can help finesse things and can validate people's approaches, and certainly they can be very useful when the patient does not have much power to manage the expectations of those around them, for example, when the patient is a child or is very ill. But, it would have been good for this nurse, who sounds very pleasant and caring, to have acknowledged the knowledge that people will bring to the adaptation that has to occur. I think most successful pacing really has to be worked out by the person themselves.

There is a mention of sticking to a pacing plan, even when someone feels good. I think most people who have had ME/CFS for a while don't have a pacing plan.

There's a focus on 'the safe activity level' and establishing a baseline. 'We encourage people to rest at that 60% charge, rather than than when they have very little or no charge left'. I know it's just a metaphor, but the result is that it all comes across as 'knowable' and 'controllable'.

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'Pacing, like any skill, must be practised and it becomes easier over time'. There's talk about helping the patient to think about things like whether they could get a carpark closer to the office. But, there is no mention of the big decisions that people need to make - do they need to work part-time? do they need to not work at all? do they need to move in with family? can they get some paid assistance? There also is no mention of the support that people need to be able to make the decisions they need to, to avoid PEM.

There is a slight hint of 'pacing up'. For example, there's talk of finding out how long a person can read for their job before they need to take a break. 'Don't increase that time, until it doesn't cause PEM.'
 
Hutan said:
There is a feeling of 'medical professionals know best'. For example, when talking about pacing, the presenter says 'usually patients need to be taught it'. I don't think that is true, I think most people with ME/CFS will find their way to some sort of pacing quite quickly. Life is just too brutal and unworkable otherwise. Yes, possibly a medical professional can help finesse things and can validate people's approaches, and certainly they can be very useful when the patient does not have much power to manage the expectations of those around them, for example, when the patient is a child or is very ill. But, it would have been good for this nurse, who sounds very pleasant and caring, to have acknowledged the knowledge that people will bring to the adaptation that has to occur. I think most successful pacing really has to be worked out by the person themselves.
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This. The two most useful things a medical professional can do is 1) admit they really don't understand the problem, and don't really have a lot of useful advice to give, and 2) in effect give permission to a patient to pace as they need to, and to not have to keep trying to 'pace up'.
Hutan said:
There's a focus on 'the safe activity level' and establishing a baseline. 'We encourage people to rest at that 60% charge, rather than than when they have very little or no charge left'. I know it's just a metaphor, but the result is that it all comes across as 'knowable' and 'controllable'.
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What they really should be saying is that a lot of this is not going to be amenable to that level of control and you need to learn to roll with it when it isn't.

I agree, the whole framing of this stuff is still that doctor knows best, when by any realistic standard they clearly don't, and are unlikely to anytime in the foreseeable future, if ever. Some things cannot be understood without experiencing them, and cannot be taught to that degree.
 
I agree. Advice of this sort may not be harmful but it is just as much bullshit as Trudie Chalder and her CBT paper in 1998 saying the best way to do CBT - having never tested it.

In PACE, the pacing was no different from standard care at all.

I hear patients talking about PEM as if it was a 'physiological process' that some health professionals understand. This seems popular with advocacy groups. There is a belief that you can be taught to PACE. Maybe, but we have no evidence for anyone knowing how to teach pacing and a shedload of evidence for them making it up and adding some pacing up.

This is current BACME style - professing expertise and sounding 'on message for the patient'.

The harm I think it does is to encourage people with ME/CFS and advocacy groups to see a need for special, different, services for ME/CFS as defined by this special PEM. PEM comes to be seen a bit like a blue disabled car sticker allowing special pass. To me this is a completely distorted view of the problem. If someone is as disabled by 'fatigue' as much as someone with ME/CFS and does not have any recognisable PEM are they supposed to stand in the queue for 'ordinary treatment' (which happens to be non-existent).
 
Hutan said:
For example, when talking about pacing, the presenter says 'usually patients need to be taught it'. I don't think that is true, I think most people with ME/CFS will find their way to some sort of pacing quite quickly. Life is just too brutal and unworkable otherwise.
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From the many thousands of comments I have seen over the years, I would estimate a minimum ratio of 10:1 in terms of whether patients or clinicians understand it best, and that ratio is not that much better from clinicians at "specialist" clinics. It probably varies between 10:1 and 100:1, some systems are far worse than others.

The problem as always is the same problem as trying to live on less than $5 a day in a rich society. Feasible? Uh, sure. In fact, lots of people do just that, and it's not just horrible but actually costs more to society than fixing its systemic causes. As always, taking a simple-but-hard/impossible problem and turning it into a complex-but-easy one. In about 99% of cases, all that physicians can realistically do is sign sick notes and disability support, allowing for the help that is available to sick people to be made available to those patients. This is reality, pretending otherwise is just fantasy escapism.

There is no amount of pacing that can allow someone who can't work for years to survive on their own without falling into misery, and that's just the financial aspect. It just doesn't exist without prior wealth, and most of us also end up losing almost all our social, even familial, support, because people don't want to be taken for suckers and demand that medical professionals validate the state of disability. The level of disability is far too high for this fantasy "self-management" approach.
 
From Facebook:

Thank you to everyone who joined us for Emerge Australia’s World ME/CFS Awareness Day symposium on post-exertional malaise (PEM).

Our thanks to our speakers and community for sharing personal stories, helpful insights and reflections on PEM recognition, validation and harm mimisation.

PEM is real and not the same as fatigue.

If you missed the event, the video and audio only replays are available now. Please share these to help build greater understanding of PEM and the reality of living with ME/CFS.

https://zurl.co/NNySJ

#EmergeAustralia #MECFS #WorldMECFSDay #FromPushToProtect
 
From Facebook:

Emerge Australia supports a sustainable NDIS that provides timely, appropriate and evidence-informed supports. But the Bill must not inadvertently exclude or underfund people with ME/CFS and long COVID because their disability is poorly understood, difficult to document through standardised tools, or unsupported by adequate mainstream services.

Our submission is informed by consultation with our Community Advisory Panel which includes people with lived experience of ME/CFS and long COVID, carers and NDIS participants.

At the heart of this submission is a simple concern: people with permanent and substantially disabling functional impairments arising from ME/CFS and long COVID must have access to assessment processes that are fair, safe, accurate and clinically appropriate.

We are urging the Government to amend the Bill so that people with ME/CFS and long COVID are not excluded from access, denied essential supports, or required to undertake clinically inappropriate treatment or assessment processes.

A sustainable scheme must also be a just one.

Our full submission is available at https://zurl.co/VEigG

#EmergeAustralia #MECFS #NDIS, #ChronicIllness, #DisabilitySupport, #LongCOVID
 
Here are some of the main linked pages from an Emerge email newsletter

One of the sections:
AusME Biobank Now In WA!

We are excited to announce the AusME Biobank has expanded to Western Australia, with collection sites available across greater Perth.

This means people living in WA with ME/CFS, long COVID and healthy volunteers, can now take part in research closer to home.

The AusME Biobank plays a vital role in supporting research by providing high-quality, well-characterised samples to researchers working to better understand these complex conditions. With WA now included, we’re strengthening a truly national research platform - ensuring samples and experiences from across Australia are represented.

JOIN THE AusME TODAY
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forestglip said:
Here are some of the main linked pages from an Emerge email newsletter

One of the sections:
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Do they collect samples at home from vsevere patients?
If not it might be worth a try to make them aware of the mobile gear that’s used for a german biobank:
One special feature of the pediatric biobank is the possibility of collecting samples at home. Using specially designed self-sampling kits, even severely ill patients can participate in the research.
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Chandelier

Post in thread 'News from Germany'


Dresden Biobank Specifically Collects Samples from Children and Adolescents

A pediatric biobank for Long COVID research is being established in Dresden. Blood, urine, and hair samples are being collected there to help researchers better understand the causes of the condition.
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Yes, they are also collecting samples from severe patients at home, let’s go! :party::party:

According to the University Hospital, patient samples such as...
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From Facebook:

️ NOW OPEN: 2026 ME/CFS & Long COVID Media Awards

How we are seen will shape how we are treated!

Calling for nominations that spotlight outstanding journalism in ME/CFS and long COVID stories that amplify patient voices, challenge stigma, and deepen public understanding.

️ Eligibility: Work published or broadcast between 1 Jan – 31 Dec 2026
Nominate articles, radio, TV, digital, or podcasts
Open to Australian and international entries

Help us honour truth-telling, courage, and compassionate reporting.

Learn more + submit: https://zurl.co/DYUFS

#emergeaustralia #mecfs #longcovid

Sophie Scott Tracey Spicer AM GAICD
 
From Facebook:
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Living with ME/CFS or long COVID?

Edith Cowan University and Emerge Australia invite Australians with ME/CFS or long COVID to take part in a confidential online survey, "Living with ME/CFS or long COVID in Australia: A National Burden of Disease Study".

Your experience, you can help raise awareness, improve understanding, support better care, and strengthen research for everyone affected.
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To complete the survey at your own pace, just click here
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https://zurl.co/NfvEc
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I did the survey a few days ago. You have to be Australian to participate.
 
From Facebook:

Now Available: Our New Patient Decision Aid Resource: How much exercise, if any, is right for me if I have ME/CFS and/or long COVID?

Making healthcare decisions can be challenging. This Decision Aid will help you decide if exercise is right for you. It can also support discussions with your healthcare professionals (eg. your doctor, nurse, or allied health professional).

This resource aims to helps you:
✅ Understand different options
✅ Compare the benefits and risks of each option
✅ Consider what matters most to you
✅ Feel more confident when making healthcare decisions

By empowering patients with trusted information, we can work together to achieve more informed, person-centred care.

Explore the resource here: https://zurl.co/TBQfT

#SharedDecisionMaking #PatientCentredCare #HealthLiteracy #PatientEmpowerment #HealthcareInnovation #EvidenceBasedCare #emergeaustralia #mecfs #longcovid #countME
 
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