News from Australia

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Art Vandelay said:
Centrelink have released a draft of Proposed changes to the Disability Support Pension (DSP) Impairment Tables which specifically mention ME/CFS and PEM.

These changes are apparently the result of a lot of hard work and feedback from ME/CFS Australia.

This is potentially very big news given the enormous difficulty people with ME/CFS have faced with accessing the DSP.
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They're making many changes, most of which are not related to ME. But the changes related to ME and fatiguing conditions (mostly on page 6) are significant:

  • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been included as an example of a condition a person may provide evidence for to be assessed under Table 1 and 6.
  • A new ‘personal care’ descriptor has been added to all point descriptors within Table 1 to capture the impacts of fatigue on a person’s ability to undertake personal care activities.
  • Post-exertional malaise has been added to examples of symptoms a person may experience for assessment under Table 1, along with being added to the examples of symptoms a person may experience when performing activities in the descriptors.
  • Addition of the recognition some activities may require a recovery period after undertaking them.
  • Amendment to Table 1 to recognise a person may be bed bound due to chronic fatigue
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When talking about 31% of respondents whose health professionals are a source of information, anyone know what they mean? I've genuinely never read or heard things on this issue from any medical professional that I didn't know and wasn't just common stuff you can get from any patient community, support group or charity.

Is that what they mean? It took me years to find that information and make it make sense with my experience, so for sure if any physician had given me this basic information at the time it would have been better than nothing. But it's still information you find in patient communities, not from official sources. And it was created by patients, mostly to counter the common disinformation people normally get.
 
We failed Australians with chronic fatigue. Will we do the same with long COVID?
We failed the many thousands of Australians with chronic fatigue syndrome. We did not invest enough in research. We did not build an effective care system. We did not believe them.

Now we are beset with a disease that bears striking similarities: long COVID. And chronic fatigue advocates say we are in danger of repeating the same mistakes.
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https://www.smh.com.au/national/we-...the-same-with-long-covid-20221101-p5bulg.html
 
I think it was just a few weeks ago that IIRC the health minister, maybe?, said that they're not really seeing any Long Covid in Australia, not a concern to them, there's nothing to do here. Or maybe the president of the medical association?
"Long COVID clinics ‘inundated’ with patients, and doctors can’t cope" "Australia’s long COVID clinics are so under-resourced patients are waiting almost a year...Victorian government warns it will struggle to care for the growing number of patients.."
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And we're really supposed to have our lives in the hands of people who keep either lying or not knowing basic facts about what's happening?

I've been saying for a while how medicine and healthcare are inherently political but this is really getting out of hands, there are many things in politics that work far better than this, where there is significantly less lying and making stuff up. Governments are heavy on bureaucracy but they are normally not that incompetent.
 
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Training: Hobart
Monday, November 14 @ 10:00 am - 12:00 pm
This workshop will cover foundational pathophysiology and functional impact of ME/CFS. Due to the projected large numbers of Long COVID patients, the links between ME/CFS and Long COVID will also be covered.
What to expect

We will use a case studies to follow patients from home, presentation to ED, on a ward, post-surgery and back into the community.

This is an interactive workshop, with each “staging” presented with questions for participants to answer about how they would approach care, keeping in mind the pathophysiology already covered.

Presenter
Kate Herbert is the Nurse Educator at Emerge Australia, the national patient organisation for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A registered nurse for the last 16 years, Kate has a background in paediatric cardiac and renal transplant, infection control and immunisation. Kate lives with ME/CFS, integrating her personal experience and extensive knowledge of the issues people face in accessing care to educate healthcare practitioners. Kate is expert at explaining the pathophysiology of ME/CFS and will provide practical examples of how to care for people with ME/CFS in the acute care context.
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further details
https://anmftas.org.au/event/myalgic-encephalomyelitis-chronic-fatigue-syndrome-training-hobart/
 
Hundreds of thousands of Australians could be eligible for compensation after a major class action win against Australia’s biggest banks and their insurers.

Law firm Slater and Gordon reached settlements with Commonwealth Bank (CBA), ANZ and Westpac worth a combined $126 million over consumer credit insurance which customers were sold while taking out personal loans and credit cards.

Many customers who were sold insurance were ineligible or unlikely to make a claim due to a number of factors, such as being unemployed or having pre-existing health conditions or diabetes when signing up.

Slater and Gordon said others did not provide consent to buy the policies, were not told they were optional or were not informed they would be charged for the product.

The lead plaintiff in the CBA proceedings said a bank employee told her there was no guarantee her loan would be approved if she didn’t take out the $25-a-month insurance policy. That’s despite being ineligible to make a claim due to being unemployed and being diagnosed with serious health conditions such as chronic fatigue syndrome and fibromyalgia.
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https://www.dailytelegraph.com.au/b...s/news-story/0dd5af91d5db27c2b7d0922b22cc9b80
 
"RACGP: GPs need more support to help patients with long COVID"

"RACGP President Adj. Professor Karen Price said that long COVID must be taken seriously."

“Long COVID is hitting many patients hard and we must do more to help them,” she said"
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If only past and current RACGP had not opted at every opportunity to deny and dismiss the issue of chronic illness and do absolutely nothing good about it, maybe current and future RACGP would have more than all this talk with definitely no walk.

Because the main obstacle to the RACGP doing whatever it is they could be doing here is... the RACGP. Which is a bit like a kind of self-kicking machine except it's someone else who gets hurt. Zero responsibility, though. Apparently. I have genuinely not once, in all this time, seen any expression whatsoever that acknowledges that decades of awful choices are obviously to blame for the lack of anything. There is simply no connection made between a state of systemic discrimination and pervasive refusal and the lack of anything useful out of it.

Imagine being responsible for something but nothing happens if you fail completely, you can even pretend to lead the charge at solving the problem you created while pretending you had nothing to do with it. And probably not bother much and get credit for simply thinking about it. Imagine that. What a cozy job that is. Politics, basically, where you can be the party in power for decades and run on fixing the failed policies of this government. Amazing.
 
Queensland quibbles over long COVID details as cases rise.
Queensland Health moving to “reframe” the term “long COVID” to “Your Recovery from COVID-19”
#COVID19qld #LongCOVID
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Our experience ... suggests that when service responses are framed around 'recovery', patients associate this with lower disease severity and duration than ... 'Long Covid'
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Ridiculous.
 
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The Australian government has released its:

National COVID-19 Health Management Plan for 2023

The National COVID-19 Health Management Plan for 2023 outlines the Australian Government health supports to manage COVID-19 over the next 12 months. These health supports have been informed by the likely 2023 Australian epidemiological outlook and advice from the Chief Medical Officer.
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On Long Covid specifically, it claims:

Long COVID: An important aspect of Australia’s COVID-19 recovery will be management of long COVID. Research is continuing into this condition in Australia. Australia’s experience of long COVID is potentially different to many other countries due to our high two-dose vaccination rates and the fact that our widespread levels of infection only occurred after the Omicron variant emerged. Infection with the Omicron variant is less likely to lead to long COVID than the Delta variant.
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No evidence is cited to support these claims. (And, indeed, no credible evidence seems to exist that would support them either. In particular, we simply do not know how many people have LC in Australia because no-one has bothered to find out.)
 
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Hutan said:
A good article about Long Covid and specifically dysautonomia in Australia
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With another great quote from David Putrino —

“There’s not a lot of awareness of things like dysautonomia … we’ve started to suffer from an over reliance on what can be seen with a very narrow scope of testing.”

“I wish I could say something other than it feels a lot like intellectual laziness. But, this is where we are. And I think that we need a bit of a wake-up call across the board.”
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