News from Australia

The Australian Broadcasting Corporation is looking for stories from people with disabilities.

Are you an emerging content maker with disability? Do you have a story that needs to be told?

The ABC is partnering with International Day of People with Disability (IDPwD) to recognise the 4.4 million Australians with disability.

A series of factual stories and content will be commissioned by the ABC to be published and broadcast across ABC platforms for IDPwD on December 3.

We are particularly interested in hearing from First Nations and culturally and linguistically diverse content creators.

Who can apply?
To be eligible, you must live in Australia, be over 18, have lived experience of disability and be available to work on your content between August and December 2024.
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https://www.abc.net.au/news/2024-06-04/idpwd-abc-callout-for-2024/103896448
 
Merged thread

The West Australian: Perth GP Jane Ralls who has long-Covid blasts ‘poor and uneven’ medical support for fellow sufferers in WA

Archived

Dr Jane Ralls said she knew exactly what long-Covid sufferers were going through because she was in the midst of her own struggle with the condition.

“As a GP I have no one to refer my patients to for help,” she said.

“The (State) Government has closed two of three long-Covid clinics. It’s a postcode lottery. If you live in East Metro, well, you’ve got one ... This is cruel madness.

“It’s ridiculous that, if a GP wants specialist input it has to be a specialty-specific referral despite long-Covid being a multi-system disease.

“Patients are simply bounced around between departments or private specialists, without getting the team approach that would help them.
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There was also very little training or support available for GPs to treat patients with the condition.

“How are all GPs expected to be up to date with the management of a completely new disease, knowledge about which is evolving very rapidly, as well as managing every other condition and presentation under the sun?” she said. “The best GPs know when they need to ask for help, but there is nowhere to turn to with this condition.”
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The Mount Hawthorn GP contacted Covid for the first time at the beginning of December.

“I was RAT positive for 18 days. So I must have had a very high viral load and I just never got better,” Dr Ralls, 60, said.

Her main symptoms were post-exertional malaise and viral myositis which caused extreme exhaustion and muscle pain respectively.
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“My problem is that I still work,” she said.

“I just point blank refused to stop working or to reduce my hours because I have very long-standing patients. I’m booked out three, four weeks ahead. I don’t want to let people down.

“I’ve had days when I’ve had to just lie down. I just shut my door, lie down on my couch for 10 minutes. Breathe, rest, and then get up and keep going.”

She now gets her receptionist to bring patients to her room, because walking into the waiting room for every patient left her feeling “wrecked”.

“I’m trying to not overdo it because it makes things worse,” she said. “It’s just so awful. I considered myself young, fit and healthy.”
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Yann04 said:
The Australian Broadcasting Corporation is looking for stories from people with disabilities.

Are you an emerging content maker with disability? Do you have a story that needs to be told?

The ABC is partnering with International Day of People with Disability (IDPwD) to recognise the 4.4 million Australians with disability.

A series of factual stories and content will be commissioned by the ABC to be published and broadcast across ABC platforms for IDPwD on December 3.

We are particularly interested in hearing from First Nations and culturally and linguistically diverse content creators.

Who can apply?
To be eligible, you must live in Australia, be over 18, have lived experience of disability and be available to work on your content between August and December 2024.
​
https://www.abc.net.au/news/2024-06-04/idpwd-abc-callout-for-2024/103896448
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Dave Clark's article is not bad, but the whole thing reeks of a need to put a positive spin on disability.
 
Sean said:
This is pretty good. Written by Hayley Gleeson.

https://www.abc.net.au/news/2024-06...smissed-doctors-myth-virus-harmless/103959078
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While there's some problematic stuff about exercise and rehab (mainly from Todd Davenport), there's a good section on the harmful Australian guidelines:

And for many people with long COVID and ME/CFS, exercise is a sure-fire way to provoke PEM, which is why clinical guidelines in the US and UK advise doctors not to recommend it without strict supervision.

Australian guidelines seem to be stuck in the past. The current clinical guidelines have faced sustained criticism for promoting graded exercise therapy since they were published in 2002. And the Royal Australian College of General Practitioners' new guidance on incremental physical activity for ME/CFS points to the controversial PACE trial — a 2011 study that claimed patients who did graded exercise and psychotherapy made impressive recoveries — but does not mention its methodology was found to be flawed and its findings exaggerated.

RACGP President Nicole Higgins says the guide clearly states that "this approach will not be suitable for all patients" and "does not purport to be a guideline for the comprehensive management" of ME/CFS. But patients and advocacy groups have argued it ignores the science of PEM and downplays the risk of harm to people who suffer it.
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The journalist is on X:
https://twitter.com/user/status/1802121197364420959
 
ABC: 'Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know'

"It's a similar story for Kate Pern, an ambulatory wheelchair user who lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating multi-system illness that gets worse the more you try to push through it.

Many ambulatory wheelchair users, such as Kate, have dynamic disabilities, which means their ability to be active can be different day-to-day.

Kate is 'predominantly housebound' and uses her non-powered chair in situations where a friend can help push her along.

The 36-year-old said being able to remain seated while out of the house prevented her from overexerting herself and ending up 'even more disabled'.

Essentially, it's given her parts of her life back."

"Many ambulatory wheelchair users report being judged, stigmatised or accused of faking their disabilities to cheat their way into support.

Shae said she was regularly accosted at accessible car parks when standing up from her wheelchair to transfer into the car driver's seat.

She's been grunted and stared at, had her car window knocked on aggressively, and been told to leave accessible parking spots 'for those who really needed it.'

'People often assume that someone who can walk should always walk,' Shae said.

Prejudice around who 'should' and 'shouldn't' use a wheelchair often leads to many ambulatory users to develop impostor syndrome."

"But then someone said to me, 'do you know what? People who don't need wheelchairs don't fantasise about using one'."
 
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What is the OUTPOST pilot study?

The OUTPOST pilot study will help design a large, national study to understand health outcomes after respiratory infection, including recovery, persistent symptoms and functional impairment.

The study will recruit up to 100 people with acute respiratory symptoms (and people without symptoms as control subjects) through general practice clinics in Victoria.

Study participants will be tested for several different viruses, including SARS-CoV-2, Influenza and Respiratory Syncytial Virus (RSV).

The pilot study will help to refine participant recruitment strategies, baseline and follow-up questionnaires and viral testing processes that can then be adapted for the main study.

Participants in the pilot study will be given the opportunity to participate in the main study once it begins.

Continues at:
https://www.apprise.org.au/project/outcomes-post-covid-the-outpost-pilot-study/
 
@DMissa was interviewed on the Triple R radio station, 14 July 2024.

Audio link

AI summary of interview:
  • Interviewee: Dr. Daniel Missailidis, research officer in molecular cell biology at La Trobe University
  • Topic: Infection-associated chronic diseases, including long COVID and chronic fatigue syndrome
  • Significance of the issue:
    • 5-10% of COVID-19 patients develop long-term effects
    • About 25% of those affected may become house or bed-bound
    • Similar issues with other infections like glandular fever
    • Estimated cost to Australia: billions annually in lost income
    • Critically underserved by research funding
  • Research focus:
    • Stratifying and separating illnesses into distinct clinical entities
    • Studying similarities and differences between various conditions
    • Investigating multi-factorial basis of these illnesses
  • Research methodology:
    • Analyzing cells from blood samples
    • Comparing metabolic function and stress responses of cells from patients vs. healthy individuals
    • Identifying differences and creating models of disease causation
  • Key findings:
    • People with chronic fatigue syndrome generate energy less efficiently
    • About 25 other significant issues identified in affected cells
  • Goals:
    • Develop rapid, accurate, and objective blood tests for diagnosis
    • Create unique disease signatures to differentiate from other conditions
    • Reduce diagnostic time and costs for patients
  • Challenges:
    • Historical skepticism towards these conditions
    • Complexity of the diseases (tens of thousands of cellular differences identified)
    • Need for methodical process to determine causative factors
  • Personal motivation:
    • Dr. Missailidis experienced a year-long disabling event
    • This experience increased his empathy for patients with hard-to-diagnose conditions
  • Future prospects:
    • Hoping to provide clarity through objective blood tests
    • Aiming to improve diagnosis and care access for patients
    • Working on validation to ensure unique disease signatures
 
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The Sydney Morning Herald: I was diagnosed with breast cancer. I’m glad it wasn’t long COVID

By Margaret Gordon

"Over the next two weeks, tests confirmed I did have cancer and a week after that I began treatment.

Treatment sucks. There’s no other way to put it. I’m having chemotherapy and immunotherapy, and I am always tired. Exercise helps but unsurprisingly, my motivation isn’t great. My body feels alien, and I don’t feel like myself. Although I’m losing my hair, that’s the thing I care about least. I’d give it all away to not feel constantly sick.

But there’s a flipside. I have never felt more loved. The number of people who have written to me, talked to me, brought me food, offered help and support has blown me away."

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"It’s also got me thinking about people living with other long-term illnesses. For many reasons, I am so glad I have breast cancer not long COVID.

Firstly, my cancer was never terminal and there is a clear path to a cure. Doctors know a huge amount about breast cancer, and it’s actually really common – some experts estimate the number is much higher than the often quoted one in 10 figure. The fact I will be cured is absolutely central to my ability to have a good attitude to what’s happening to me. I can (and do) say to myself: 'It’s not forever, it will end.' For long COVID sufferers, there’s no such comfort.

Secondly, people understand what cancer is. They know that treatment is rough, and usually have someone close to them who’s going through it or who’s been through it. With long COVID, there’s still a huge knowledge gap – most people generally don’t understand what it is or how it feels, which correlates to less sympathy and practical help. Among some, there is an attitude that people suffering long COVID are at best a bit dramatic, and at worst imagining it. That it’s 'all in the mind'.

While I have been cocooned by love and support, my friends with long COVID never got anything like that, even though their day-to-day lives were just as impacted as mine.

Also, my workplace has been incredibly accommodating. I am able to take time off to rest and heal as I need to. My work has been absorbed by understanding teammates, and I have flexibility to work from home or take time off when I need it. The people I know with long COVID (mostly women over 40) have had to work through or look after children as if nothing is happening to them. Some workplaces are supportive towards long COVID sufferers, but it’s certainly not a given."
 
forestglip said:
But there’s a flipside. I have never felt more loved. The number of people who have written to me, talked to me, brought me food, offered help and support has blown me away."
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That's such a huge and confusing part of this. MDs seem to be used to this happening with some diseases, hence why they extend all of this as if we're getting showered in it. Doesn't matter that it's only some, there's lots of imagination involved.

It happened once to me. In 16 years of being ill. And it was over in weeks. I have received absolutely no emotional support of any kind, because it's too hard to understand and relate to. Even from the few people who did try to help a bit, they just didn't know what to do, because the real experience of illness has to involve hospitals and doctors and whatnot. No one knows what to do and simply disengage. It's as isolating an experience as being stuck in a deep hole.

It's a completely different experience, and because facts are completely irrelevant when it comes to chronic illness, debunking it makes zero difference. It's all based on imagination.
 
Good piece. The fact that it is even being published in a major (in the Australian context) mainstream media outlet is a sign of progress.

The fact that it can be regarded as a noteworthy and laudable sign of progress is itself a sign of how low the bar has been set in our media.
 
The government has announced the Medical Research Future Fund (MRFF) grant recipients. A list of projects relevant to Long Covid has been posted on Reddit here.

Unfortunately one of them includes this from Paul Glasziou:

Australian Long COVID Adaptive Platform (ALCAP) trial will establish a national adaptive platform trial by: (1) rapidly and regularly checking all registered trials of treatments for long COVID from around the world and identify potentially effective ones (both drug and non-drug); (2) finding out treatment priorities and preferences of long COVID patients and clinicians; and (3) developing the protocol for the national platform trial for testing the potential treatments.
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No doubt unblinded trials with subjective outcomes of exercise and CBT will be rated well.

Andrew Lloyd also pops up on projects related to 'fatigue'.
 
This syndrome is shockingly misdiagnoaed. Little wonder Bethany felt 'medically gaslit'

Women with POTS have, on average, faced an almost seven-year wait for a correct diagnosis, during which time close to 70 per cent are incorrectly told they have anxiety, and almost 40 per cent have their symptoms misattributed to depression, according to data from 457 Australian patients.

Men, despite being much less likely to develop POTS and overall reporting less severe symptoms, were able to get a correct diagnosis more than three years earlier than female patients on average, and were also less likely to have their physical symptoms misattributed.

The Australian POTS Foundation is calling for government funding to educate GPs to improve their understanding of the condition, which some research has suggested is a common cause of what is otherwise known as long COVID.

LINK
 
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