News from Australia

Some good news:


Count ME: A Milestone for ME/CFS Recognition in Australia

In a groundbreaking development for the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community, ME/CFS will be included in the upcoming Australian Burden of Disease Study (ABDS), set to be released by the Australian Institute of Health and Welfare (AIHW) in December 2026. This marks the first time since 2003 that ME/CFS will be recognised as a separate condition within the national health framework, a pivotal moment that promises to reshape the landscape of public health for over 250,000 Australians.

The ABDS is the nation’s definitive guide for assessing the impact of various diseases and health conditions on the Australian population. By utilising Disability-Adjusted Life Years (DALYs), the study provides a comprehensive measure of health loss, allowing for direct comparisons across a wide spectrum of health issues.

Count ME: A Milestone for ME/CFS Recognition in Australia – Emerge Australia

emerge.org.au emerge.org.au
 
Some media attention on the long term risks of viral infection:

Why Kaylee McKeown made a ‘smart call’ to miss Glasgow

Five-time Olympic gold medallist Kaylee McKeown will be sorely missed when Australian swimmers take to the pool for the start of the Commonwealth Games in Glasgow on Friday.

But her decision to withdraw from the competition due to glandular fever is a smart move for her long-term health, experts say, and represents a shift in perception of the risks it can, in some cases, develop into a lifelong battle with chronic fatigue syndrome.

The seriousness of glandular fever, with its benign-sounding nicknames of “mono(nucleosis)” or the “kissing disease”, is too often underplayed given its potential without careful management to become chronic fatigue syndrome, an illness that at its worst can leave people unable to work, or even bedridden.

This is the view of University of Melbourne biochemist and medical researcher Chris Armstrong, who specialises in the chronic outcomes of infectious disease.
Click to expand...

Archive link to the article
 
From Millions Missing Australia on X:

"For 6 years, Lily Schubert was bed bound, unable to walk, talk, read or even endure sunlight due to severe #MyalgicEncephalomyelitis.
Lily felt like she was “living in a corpse”
Listen to Abbie Chatfield's podcast It's A Lot to hear Lily's story #MECFS



—
Facebook post:

For six years, Lily Schubert was bed bound, unable to walk, talk, read, or even endure sunlight due to severe Myalgic Encephalomyelitis (ME or the condition previously known as Chronic Fatigue Syndrome*)

She spent from her late teens to mid twenties in this state, which she describes as feeling like she was “living in a corpse”, with no certain cure or treatment.

After years of trying, she found a treatment that worked. There was only a 5% chance that Lily would recover from and such a severe case of ME. it is almost miraculous that she was able to join me on the podcast for a two hour long conversation.

I cited during most of this episode, as did Lily’s gorgeous Mum who accompanied her in the record, and the rest of the podcast team.

I learnt of Lily when she was in the beginning of this recovery, and have been in awe of her since. Once she was able to talk and read and begin to interact with the world again, she started a TikTok account and documented her journey from being bed bound, to feeling the sun for the first time in six years, her first swim in six years and other pivotal moments in her medical progress.

I genuinely think everyone should listen to this episode. Lily’s story is not only important to raise awareness of ME, but for all other chronic illnesses that are often minimised or ignored.

This is one of the most impactful conversations I’ve had.

#me #mecfs #chronicfatiguesyndrome #chronicillness

* This condition is still often referred to as ME/CFS, though Lily and I talk on the episode about why she just uses the term ME)

Listen on Spotify:


Listen on Apple:
 
Alternative therapy 'wormhole' killed my cousin, says author Hannah McElhinney

Unsure if this article has been discussed on here (or if I'm sharing it correctly) but seems this person will be writing a book about scam therapies regarding "controversial diagnoses" after her cousin (who was dx "chronic fatigue syndrome", fibro and seemingly self dx(?) chronic lyme) died seeking treatment in Malaysia

Overwhelmingly sceptical of the book and the article itself, but it does remind me of a fiasco a few years ago where the Emerge nurse service referred me to a very well regarded clinic, but when I did some further research I found that they were quietly doing extremely controversial stuff. Some articles suggesting their "out there" practices were linked to some patient deaths, etc. I tried to ask questions about it on some of the Australian MECFS groups but was shut down pretty hard, any criticism or even questions were totally rejected. I am hoping eventually it gets picked up again. It is scary Emerge continues to recommend clinics like that.
 
Dolphin said:
From Millions Missing Australia on X:

"For 6 years, Lily Schubert was bed bound, unable to walk, talk, read or even endure sunlight due to severe #MyalgicEncephalomyelitis.
Click to expand...
I thought this was pretty good. Lily is very articulate, she's able to express what being bed bound is like, she talks about the impact on her family. I think that interview will be effective with particular audiences in increasing understanding of ME/CFS.

She says that medical treatment helped her improve. She says that, as she was improving physically, it was important to have people around her to help her cope emotionally with the changes. As she improved, it seems like she had more scope to grieve what she had lost.

She says that her capacity is now something like 30% or 40% of a healthy person. Clearly, there are many things she still cannot do.

The actual medical treatments aren't discussed, and I think it's likely that is intentional. She talks about wanting to advocate for research. I had to search for her treatments and found some reddit posts. The treatments seem to be a grab bag of all sorts of things, LDN, Abilify, MCAS medications, POTS medications, various supplements.... No doubt just the passage of time had an impact.
 
Last edited:
Trish said:
Are you able to say what controversial treatments they were using?
Click to expand...

Off the top of my head - ivermectin to treat COVID and a laundry list of other things, off label use of Malaria treatments, caffeine enemas, those very expensive mould tests (and of course the supplements to treat them). All sorts of "integrative cancer treatments" and the tests to go with them. These are just the ones I consider dangerous, they do all sorts of "harmless" but expensive treatments such as sound therapy for cancer, various light therapies etc.

One of the doctors got done for issuing hundreds of fraudulent vaccine exemptions to children, and one of their integrative cancer trials was staffed by a man who'd had his medical license revoked after the death of two of his patients, one of whom was a young child.

Funnily enough, they now offer the treatment that the woman in the article's cousin died seeking - hyperthermia.

I don't know. When typing it out it doesn't seem like much, but to me this should cumulatively have been enough to justify scrutiny; I was surprised that even the most level-headed patient communities were quite offended I even asked.

edited to add: I think I am softening things a bit because I got a lot of negative feedback/attacked when asking "has anyone noticed this stuff?" in one of the Australian MECFS Facebook groups. My honest personal opinion is that the clinic is predatory and dangerous, no question about it. And I feel deeply for my peers who have sunk tens of thousands of dollars into 'treatments' from this clinic.
 
Last edited:
We can make a thread in our Doctors and Clinics section if you want @rodentguy? You can just message me with the name of the clinic and I can make it if you prefer.

@Simone, fyi. Rodentguy, I'm not sure if you tried, but it would be worth writing to Emerge to alert them to the issues with the clinic their staff member is recommending. I think you are right to be concerned.
 
Hutan said:
We can make a thread in our Doctors and Clinics section if you want @rodentguy? You can just message me with the name of the clinic and I can make it if you prefer.

@Simone, fyi. Rodentguy, I'm not sure if you tried, but it would be worth writing to Emerge to alert them to the issues with the clinic their staff member is recommending. I think you are right to be concerned.
Click to expand...
Thanks for the tag. Yes, @rodentguy, please write to us. It’s good to have first hand accounts
 
You must log in or register to reply here.
Back
Top Bottom