News from Australia

I don't have the cognitive capacity (or the stomach) to listen to this right now. Apparently Norman Swan was on national radio claiming that graded exercise and psychological therapy were beneficial for Long Covid:

What are the ongoing implications from Long-Covid?- Health with Dr Norman Swan
On Friday, researchers, clinicians and patients, gathered in Victoria for what was probably the first conference in Australia devoted entirely to the issue of Long Covid.

The latest research was presented as well as the results of a unique Long Covid survey - with some dramatic results. Presenter of ABC RN's Health Report, Doctor Norman Swan, was the only journalist in the room, and he joined RN Breakfast to discuss.
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Those of us familiar with Swan (there are a number of posts in this thread) will recall he holds strong prejudices about people with ME/CFS and has little familiarity with what constitutes quality science.

Complaints to the ABC can be made here: https://www.abc.net.au/contact/complain.htm
 
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He has a distracting pronunciation of "Covid" -> "covvid".

... largely neurological symptoms: brain fog, fatigue, feeling physically weak. But also unable to exercise, breathlessness...
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What is this fixation that fatigue or "feeling physically weak" is neurological? At least he didn't wade straight in with "neuropsychiatric" or "psychological". Later —

INT: Why do you need team-based care?

NS: Because you've got multiple problems. You've got psychological issues - where understandably you're feeling knocked about psychologically. High rate of depression and anxiety in this group, so that needs help. You need to have graded exercise. If you're fatigued and you get fatigued easily with exercise, you can easily overdo it, so there's a pattern of getting back to a previous exercise pattern, and that requires skill. And there are physical effects as well ...

INT: When you say the mental health aspect of it - I mean are people actually traumatised by the experience? I don't really understand what you mean.

NS: Um, nobody does understand that. But the reality is the brain inflammation caused by Covid almost certainly causes psychological effects as well. So there are physical effects in the brain which produces an emotional change which is physical in a sense in the brain.
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The latest research was presented as well as the results of a unique Long Covid survey - with some dramatic results.

I will wait to see how they defined LC.

NS: Because you've got multiple problems. You've got psychological issues - where understandably you're feeling knocked about psychologically. High rate of depression and anxiety in this group, so that needs help. You need to have graded exercise. If you're fatigued and you get fatigued easily with exercise, you can easily overdo it, so there's a pattern of getting back to a previous exercise pattern, and that requires skill. And there are physical effects as well ...

Yep. Straight out of the BPS playbook.
 
The first round of the Medical Research Future Fund grants for Long COVID were opened today. This is $14m of the allocated $50m for Long COVID.

The emphasis is definitely not on biomedical research. Depending on what projects are funded (applications close Nov 1), it could be that none of the funding goes to biomedical research. Granted, this is only the first $14m, but it’s telling that the first allocation of funds isn’t primarily to understanding pathophysiology.

These four streams below each represent one of the objectives of the government’s Long COVID Research Plan (developed by the Expert Advisory Panel which Andrew Lloyd was on). You can read more about the Expert Panel and it’s Research Plan here: https://www.health.gov.au/committee...d-19-pasc-research-plan-expert-advisory-panel

Stream 1: large-scale project to identify how people experience Long COVID, including the impact on their physical and mental health and social and emotional wellbeing.

Stream 2: large-scale project in partnership with consumers, health service providers and policy makers to generate knowledge of population-wide and health system impacts of PASC.

Stream 3: small scale incubator projects:
Topic A: investigate the molecular mechanisms, pathways or biomarkers
Topic B: build knowledge of key factors that impact PASC prognosis, including but not limited to psychosocial, physical and behavioural contributors

Stream 4: conduct inception projects that build evidence and capability to demonstrate the feasibility of establishing a national adaptive platform trial that would allow for rapid assessment of pharmacological and non-pharmacological interventions of PASC

https://www.grants.gov.au/Go/Show?GoUuid=8c8dfeb7-9b71-4159-9b68-fcbf72e79c6f
 
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oldtimer said:
Nice to read a good description of life with ME from the ABC. No picture of a swooning young thing either:thumbup:
https://www.abc.net.au/news/2023-09-09/why-mecfs-is-nothing-like-everyday-fatigue/102776070
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The journalist who wrote the article has ME/CFS. He's active in some local ME/CFS groups and was quite determined to get the tone of the article correct.

Apparently those photographed were told not to dress up or wear make-up especially for the occasion as they wanted an accurate depiction.
 
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Just a reminder about Norman Swan and his medical business interest:

"Norman Swan is a co-founder of the huge Tonic Health Media organization which aims to bring very basic health information to the masses. The leaflets and film clips played in doctors' surgeries and exercise programs in businesses are examples. Their reach is far and wide and is based on prevailing scientific evidence. Mental health features prominently in their advice."

He seems to want a foot in both the genuinely science-based and the wishy-washy brain stuff camps, which covers all bases and is good for business of course.

This is an interview he recorded for his company so presumably promotes views that best serve his company:
Norman Swan interview with Dr. Samuel Harvey, Kings College London, from 2012, discussing mental illness and chronic fatigue syndrome and the characteristics and traits of PWME. It goes from 14:43 to 21:00.
http://www.abc.net.au/health/video/clips/3404256.htm
 
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I don’t live in Australia.
This is the first time I became aware of him:
Comparison of treatments for chronic fatigue syndrome - the PACE trial
Researchers in the UK assessed the effectiveness and safety of four treatments for people suffering from chronic fatigue syndrome in what's called the PACE trial. PACE stands for 'Pacing, Activity, and Cognitive behaviour therapy: a randomised Evaluation'.

While this trial actually has some good news, the reactions from some people who claim to represent patients has been extraordinary.

Guests

Credits

https://www.abc.net.au/listen/progr...son-of-treatments-for-chronic-fatigue/2993296
Has a transcript
 
Australian MP Anika Wells battles chronic illness, raises ME/CFS awareness
A name that has been making waves across the internet is that of Anika Wells. The Australian political sphere knows her well, and her recent health concerns have drawn the attention of the public. In this article, we delve into the details about Anika Wells’ illness and provide an update on her current health situation.

According to reports, Wells was diagnosed with a chronic illness in 2020, highlighting the need for increased awareness and support for people with conditions such as ME/CFS. The ailment in question is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a chronic autoimmune disease. This diagnosis has led to a difficult journey for Wells, but it is not the first time that someone’s health has made headlines. For Wells, this diagnosis is more than just a medical label, which we will further explore in the next section.
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https://thethaiger.com/world/news/555795/
 
I wish I had her version of ME so I could be the federal minister for aged care and sport, have three children under two from the looks of them in a TV show (Kitchen Cabinet) I happened to see tonight where she cooked a meal and talked to the show host in the evening and said she had to get up at 4am.

She exuded energy and would need huge reserves of it for the constant travel between her home and office in Queensland and Canberra.

She said she has an auto-immune disease which causes her a level of pain that has apparently sent her to hospital, presumably before she got her medication right. That sounded like her main symptom. It was the only one she mentioned.

She spent time in hospital fine tuning the dosage of an infusion she now goes to hospital for every few months I think she said. She implied this kept her going on her frantic schedule.

ME ??? I look forward to the next section.
 
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Dolphin said:
Norman Swan outrage for endorsing graded exercise therapy for chronic fatigue syndrome and long Covid sufferers
  • Fury over Norman Swan endorsement
  • Swan backed fatigue exercise therapy
https://www.dailymail.co.uk/news/ar...ic-fatigue-syndrome-long-Covid-sufferers.html
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I've read through the article.

'All our treatment plans are personalised and holistic, exercise is only a small part of effective treatment.'
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Thought that was a bit worrying. But the overall response in the entire article is that GET doesn't help patients at best and can make them suffer more at worse. It's not a perfect article but ultimately a good one.

The therapy claims to help CFS or long Covid patients to rebuild their tolerance to physical activity by incrementally increasing the intensity of their exercises.

The therapy is divisive with some practitioners encouraging it while most regard it as ineffective and claim it could worsen the severity of symptoms.
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This is tremendous change from previous articles. Swan getting (justly) treated like the outlier.
 
Sly Saint said:
Australian MP Anika Wells battles chronic illness, raises ME/CFS awareness

https://thethaiger.com/world/news/555795/
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Unfortunately (or fortunately, depending on how you look at it) this story is not true, and based on misinformation.

Annika Wells has made public that she has an autoimmune condition and that she won’t name her condition publicly for privacy reasons: https://www.abc.net.au/news/2023-10-03/anika-wells-chronic-invisible-illness-disclose/102885146

There’s nothing to suggest her stance on naming her illness has changed.

The story of her having ME/CFS, saying she had been diagnosed in Dec 2020, appears to have originated from a misreporting of a Parliamentary speech she gave in 2021, in which she spoke about one of her constituents who had been diagnosed with ME/CFS in Dec 2020. It seems the original report confused her speaking about her constituent with her speaking about herself.

The original article: https://geniuscelebs.com/anika-wells-illness-health-2023-autoimmune/
The 2021 parliamentary speech (and transcript): https://www.anikawells.com.au/news/speeches/ndis/
 
From the Daily Mail article:
[Swan] also cited a PACE trial that claimed there were benefits for CFS sufferers from GET although admitted the study was 'controversial' and a 'group of people with chronic fatigue syndrome don't like' it because 'they think it was badly done'.
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Bald face liar. It is far more than a "group of people with chronic fatigue syndrome", as he damn well knows.

Just another round of the shameless gutless misrepresentations of the facts. Coz the BPS cult got nothing else.
'But I think we're getting to a middle ground here,' Dr Swan said about using GET and cognitive behavioural therapy.
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In the bargaining phase, I see.
 
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