News from Australia

From the ABC article mentioned above.

It's changed the way she sees her role as a doctor too.

"As a GP prior to all of this, I was pretty sceptical of things.

"I certainly had sympathy for conditions like fibromyalgia, but I didn't have the empathy that I have now. I didn't understand it. I really didn't get it.

"If I could go back and speak to myself as a GP prior to all of this, I would have been a much better doctor then, and I will hopefully be a much better doctor now."
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Funny about that!
 
Interesting podcast. The 3 doctors with long covid all have very different problems. One has potentially life threatening blood clots in his head and is on Warfarin treatment, one has neurological damage to the spine leading to needing to use crutches to walk and other symptoms and is still under investigation, and the third had what she diagnoses as dysautonomia and has improved on beta blockers that help control her heart rate.
 
Snow Leopard said:
From the ABC article mentioned above.



Funny about that!
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Ah, well, now we know how to fix this: just give physicians every disease so they can learn from experience, which is clearly the only way to really understand anything. Unless someone has a plan B? Maybe something involving listening to patients and following the evidence, with science and all, so this is not necessary?

The inability to learn from experience as an observer is maddening. If one has to personally experience something to understand it then we are not dealing with expertise and this needs to be fixed at a fundamental level. We could have avoided all of this and instead here we are 16+ months into it and barely a few thousand people seem to have learned anything useful out of it, still not quite reaching where we were 3 decades ago and all the work done so far is barely playing catch up, mostly out of obvious dedication to avoid the inevitable conclusions.
 
CASEY STONER TALKS ‘TERRIBLE’ CHRONIC FATIGUE, DUCATI’S ‘ZERO LOYALTY’ TO RIDERS

For those who don't follow motorbike racing, Casey Stoner is a two-time MotoGP world champion, who - as a surprise back then - retired at the age of 26, at the very height of his career:

Stoner now believes a misdiagnosis of being lactose intolerant earlier on in his racing career was in fact Epstein-Barr, an energy-sapping illness that has halted the career of several riders.

The Australian believes he was racing on while suffering with the virus and which doctors believe would go on to trigger his current condition.

“I raced with Esptein-Barr but chronic fatigue syndrome is a whole other level,” he told Australian Motorcycle News in a wide ranging interview. “It’s been terrible. I didn’t believe it existed. It started after I had my injured shoulder reconstructed in 2018.

“When I began training after the operation I was collapsing halfway through gym sessions. Eventually I got diagnosed with chronic fatigue syndrome. I spent six months never getting any further than from the bedroom to the couch. That was it, that was my day.”​

Full article: https://www.visordown.com/news/raci...e-chronic-fatigue-ducatis-zero-loyalty-riders
 
@Wyva posted about an interesting article here:Possibility of ME or PVFS after COVID-19, Long Covid

Here's a direct link to the article: https://www.9news.com.au/national/r...yndromes/ff3bc951-4fce-4448-82b5-9ed605a81bf9

There's mention of support groups for people dealing with post-Ross River Virus symptoms:
Ms Astill helps run one of the many support groups which have sprung up on Facebook for long-term sufferers of Ross River Virus. Her group has 2700 members, mostly Australian. Like Ms Astill, many in the group have been struggling with symptoms for years, with the debilitating health problems often dismissed by doctors. Some have given their illness a new name in recent times – "long Ross River".
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There's also mention of virologist Lara Herrero at Griffith University
Griffin University virologist Lara Herrero is one of Australia's foremost experts on the Ross River virus.
Dr Herrero contracted Ross River herself at a family BBQ in Western Australia back in 2004.
It would change the course of her career and she soon pivoted from researching viruses mainly affecting children - such as hand, food and mouth disease - to mosquito-transmitted viruses.
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Dr Herrero, who has since pioneered a breakthrough treatment for a particular type of arthritis brought on by viral infections such as Ross River, said there was still a lack of urgency regarding the need for research into the field and it was often hard to get funding.
"The symptoms are debilitating and awful but I have struggled to get funding and support for this because a lot of people simply don't care until they have it," she said.
"Then, when you have it, wow, all of a sudden do you care because your whole life and livelihood is disrupted."
Scientists and doctors have long known about post viral syndromes, which Ross River is notorious for, but the experiences of patients were still treated with a degree of scepticism, Dr Herrero said.
"I feel like part of the fight has been convincing scientists and clinicians that there is something here, these people aren't crazy," she said.
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Also worth noting the journalist who has written a sympathetic article, choosing credible people with post-viral symptoms to illustrate the issues.
Contact reporter Emily McPherson at emcpherson@nine.com.au.
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ME/CFS Australia have called for Australians with ME/CFS to lodge a submission to the Disability Royal Commission. They have produced a guide to help with preparing submissions:

How does this concern people with ME/CFS?
The scope of the Royal Commission’s ‘Terms of Reference‘ are quite broad. This means that it will examine issues that impact people across a variety of settings – including the actions of carers, medical professionals, hospitals, housing providers, Centrelink, the NDIS, insurance companies, schools and universities.

As a person living with ME/CFS, or a family member or carer, you know well the experience of ME/CFS. We all understand the vulnerabilities that occur.
  • There is neglect.
  • There is abuse.
  • There is violence in all its forms.
  • There is exploitation.
These issues come from all corners of society. They can occur inside our homes and they can occur in a variety of interactions outside our homes.

ME/CFS is one of the most heavily stigmatised conditions within the medical world. For ME/CFS people, this is an extraordinary opportunity to expose the harms done to us and put forth our solutions for the problems. For people with ME/CFS these are the issues that are the result of low research, poor quality research, misconceptions and, unfortunately, self-interest.

Our voices have been stifled for a long time. For people with ME/CFS, this inquiry is for and about you.
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The Royal Commission's submission page is here:
https://disability.royalcommission.gov.au/share-your-story/make-your-submission

I believe that submissions will be open for some time yet but will update if I discover a deadline. [Edit: it may be as late as Feb 2022]

If I am well enough, I plan to write to them about:

- the disgraceful way we are treated by medical professionals
- the outdated, harmful ME/CFS treatment guidelines
- the lack of monitoring of harms from psychological treatments
- the institutional failure that led to the above
- discrimination (eg, lack of access to telehealth and work from home)

I hope others can lodge submissions also.
 
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Art Vandelay said:
ME/CFS Australia have called for Australians with ME/CFS to lodge a submission to the Disability Royal Commission. They have produced a guide to help with preparing submissions:




The Royal Commission's submission page is here:
https://disability.royalcommission.gov.au/share-your-story/make-your-submission

I believe that submissions will be open for some time yet but will update if I discover a deadline. [Edit: it may be as late as Feb 2022]

If I am well enough, I plan to write to them about:

- the disgraceful way we are treated by medical professionals
- the outdated, harmful ME/CFS treatment guidelines
- the lack of monitoring of harms from psychological treatments
- the institutional failure that led to the above
- discrimination (eg, lack of access to telehealth and work from home)

I hope others can lodge submissions also.
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I did a private submission over zoom. It was easier than I thought. Disability Advocacy services are also funded to help people with their submission. I had an advocate help me prepare and write a follow up written submission to add to my verbal submission.
 
Australian former MotoGP champion Casey Stoner gave a press conference at a recent meet with some details of his mecfs experience:

https://amp.nine.com.au/article/32da344b-0fc1-40a9-9b62-faefab4a2d33

For the first time in more than three years, Australian legend Casey Stoner made an appearance at a MotoGP event.

It comes after the two-time MotoGP World Champion revealed in 2019 that he had been diagnosed with Chronic Fatigue Syndrome (ME/CFS), which impacts on sleep, causes profound fatigue and difficulties with memory.

"I got to the point where I couldn’t get off the couch basically for five months. From bed to the couch was my exercise for the day. I couldn’t explain anything, we couldn’t understand anything."

“Trying to learn how to conserve energy through the day. Learning what hurts me long term versus what not necessarily makes me better, but reduces the effect of my issue.”

“Because people can't see it, it's not a physical element that people can see, so people aren't taking it as serious.

“They all just go, 'you're a bit tired, get up'.

“Currently we have no cure. We don't have enough information on things that can help."

“The amount of positive feedback I've had since coming out and telling the public that I have ME/CFS - it's nice to know people are out there willing to help recognise and understand the situation isn't good for people.

“I hope other people out in the world can get support and this is what we're doing.”

Also covered online on fox sports ("chronic fatigue battle" ugh), daily mail, Yahoo sports, news.com.au and some specialist MotoGP outlets.
 
Parliament of Australia

Community Affairs References Committee

01/11/2021

Purpose, intent and adequacy of the disability support pension
Mr Hallman : I will share the opening statement with Ms McMillan.

The disabling, multisystemic disease, ME/CFS, myalgic encephalomyelitis chronic fatigue syndrome, is an energy limiting chronic illness, where the most disabling feature is a pathological inability for cells to produce energy on demand. Even mild ME/CFS is severely disabling. The current policies and procedures for the DSP do not accommodate this form of disability. Of the 260,000 Australians with ME/CFS, 25 per cent are so impaired by the inability to produce energy for everyday basic tasks that they're unable to leave home. More than 15,000 are bedbound. For context, about 3,000 get DSP. People struggle to understand. The simplest explanation is an analogy with a phone battery that never charges beyond 20 per cent. That 20 per cent rapidly drops, and when the battery fully discharges the phone will not operate. The DSP has not been designed with an appreciation of such energy limitations. I will pass to Penelope.

Ms McMillan : ME/CFS is just one example of an energy limiting chronic illness. We're not speaking just for ME/CFS here. There are critical points to be made about energy limiting chronic illness and the DSP. Firstly, there is no suitable impairment table. We've already heard a little about that this morning. With energy impairment, people experience incapacity across most of the tables, yet the way the table descriptors allocate points, people don't quite fit. Table 10, for digestive and reproductive function, offers an appropriate model for attributing points to global incapacity, and table 10 could be easily adapted to energy limiting chronic illnesses
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https://parlinfo.aph.gov.au/parlInf...0002;query=Id:"committees/commsen/25252/0003"
 
Organisation : National Advisory Advocacy Council for ME/CFS Research

About the organisation
Organisation name : National Advisory Advocacy Council for ME/CFS Research
ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an insidious disease that destroys lives and is estimated to cost the Australian community billions of dollars each year. Until recently, there has been no known cause, no reliable diagnosis and no approved clinical treatment pathways. Australia is leading the world in clinical and scientific investigation and establishing the governance and advocacy frameworks to build strong mutual ties between patients and researchers. https://naac-mecfs.org/

The National Advisory Advocacy Council for ME/CFS Research is a peak body founded in Queensland in 2019. We are changing our organisational structure to a charitable company limited by guarantee, and are seeking a suitably-qualified Treasurer to join our Board.
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https://probonoaustralia.com.au/vol...a-dynamic-new-science-focused-not-for-profit/
 
Australian National University
event
Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
1–1.30pm Thursday 25 Nov 2021

zoom

About
Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic illness, estimated to affect over 190,000 Australians. Symptoms include severe, persistent fatigue lasting for more than six months, post-exertional malaise, pain, orthostatic intolerance, and poor concentration. Whilst there are several diagnostic criteria available, the pathophysiology of the illness is not well understood and a specific diagnostic test is yet to be identified.

Research from La Trobe University has shown that people with ME/CFS have altered mitochondrial function. Data from the same participants have also been used to develop a Weighted Standing Test for assessing symptom severity, and to identify differences in blood and urine pathology results between patients and controls.

This undergraduate project analysed data from the La Trobe study in conjunction with heart rate and blood pressure data obtained during standing tests to determine if a relationship exists between mitochondrial function and autonomic symptoms in people with ME/CFS.

Bio
Barbara Howarth is an undergraduate student enrolled in the Bachelor of Medical Sciences degree. Having previously completed a Bachelor of Science degree with Honours in Physics at ANU and a Masters of Analytical Psychology at UWS, and working in the public sector in IT, she has returned to study to pursue her interest in health communication.
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https://rsph.anu.edu.au/news-events/events/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs
 
A poignant article for International Day of People with Disability:

A love letter to my disability, Myalgic encephalomyelitis

Dear disabled body,

Thank you for carrying my heart and soul these past 16 years. You've pushed me to become a better, braver person and taught me some of the most important lessons of my life.

We met when I was 18, but it took ages to learn your name. When I got glandular fever, I figured I'd bounce back soon enough. I didn't. I began to hear urban legends about people who took years to recover, or never recovered. I was sceptical.

I started hearing the name chronic fatigue syndrome. I asked my GP, "Could it be chronic fatigue syndrome?" He grimaced and looked away. "That's not really a helpful term," he said. "It's better if we call it 'post viral syndrome'."

In other words: Don't call it chronic fatigue or people won't believe you.
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