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November 1, 2024
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This episode is a conversation with Dr. Lucette Cysique about long COVID. We discuss terminology, symptom profiles, epidemiology, biological mechanisms, psychological and sociocultural factors, overlap with chronic fatigue syndrome, overlap with functional neurological disorder, neuropsychological evaluations, and treatment recommendations.

If you’d like to receive APA-approved CE credit for listening to this episode, click here.

About Lucette
Lucette-Cysique-picture.png


Dr. Lucette Cysique is an Associate Professor and Neuropsychologist at the University of New South Wales in Sydney, Australia. She is a cross-disciplinary neuropsychologist with extensive neuroimaging training and long-term experience with neuro-viral and immune biomarkers. She leads a research program into the neurocognitive complications in major infectious diseases (COVID-19, HIV) and their main comorbidities: brain pathological ageing, cardiovascular diseases, and depressive disorders. Her appointment in the Viral Immunology Systems Program at the Kirby Institute involves the overseeing the Australian Partnership for Preparedness Research on Infectious Disease Emergencies (APPRISE) Long COVID Initiative. Working in global epidemies, Dr. Cysique has extensive experience in cross-cultural neuropsychology. Dr. Cysique has held major international and national research responsibilities, with associated funding. She has led the research on more than 40 national and international cohort studies/trials as a neuropsychology or neuroimaging leader. She served as Chair of the NeuroCOVID International Neuropsychological Society (INS) Special Interest Group (SIG).

Resources
COFFII (Collaborative On Fatigue and Related Symptoms Following Infection)

She has received a Mason Foundation grant.
 
Sean said:
And many of them don't want to.
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I think they'd all be happy to actually know better. What they don't want is the in-between: doing the work to get there. They'd be happy being handed the full solution. That's what happened with peptic ulcers. The entire scam industry around psychological treatment died out completely as a result of it. Not overnight but in all the years of following all psychosomatic research, how many times have we seen peptic ulcers mentioned in it during that time? Exactly zero. It used to be the defining psychosomatic disorder.

They want the result of the work without doing the work. But even worse, they don't think there's any work to be done. Not that kind of work anyway. But they'd all love being handed the result of the work. They're just never going to put any effort into it if it involves anything more than just following a script.
 
A Parliamentary Friends of ME/CFS meeting was held in Canberra yesterday. The Federal Minister for Health and Aged Care, Mark Butler, spoke, along with Senator Jordon Steele-John and MP Dr Mike Freelander, as well as patient advocates Penelope McMillan and Carla T, plus Alan Singh (NHMRC) who gave an update on clinical guidelines, Dr Richard Schloeffel and Professor Paul Fisher.

There is a short thread on Twitter and Bluesky as well (identical thread across both platforms). The Twitter thread is on Emerge’s website, and the Bluesky thread is here: https://bsky.app/profile/phoenixme.bsky.social/post/3lb6o4qnjhi2r

An audio recording should be available in a couple of days.

https://www.emerge.org.au/parliamentary-friends-for-me-cfs/
 

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Andrew Lloyd's post-covid study is currently recruiting. I believe it was funded by the Medical Research Future Fund (MRFF).

OUTcomes POST COVID: The OUTPOST study

OUTPOST is a national study to understand health outcomes after respiratory infection, including recovery, persistent symptoms and functional impairment.

The study will recruit people with acute respiratory symptoms (and people without symptoms as control subjects) through general practice clinics, pharmacies and the community.

Study participants will be tested for SARS-CoV-2, Influenza and Respiratory Syncytial Virus (RSV).
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If I sign up, what do I have to do?

Once you provide your consent to participate in the study, you will be able to collect a set of two Rapid Antigen Tests (RATs) from your local GP or pharmacy (or have them sent to you) to take a test at home. The RATs will come with step-by-step instructions. If your test is positive (for SARS-CoV-2, Influenza or RSV), you will take a photo of the test and upload it to our study database via a provided link.

You will also be sent a set of baseline questionnaires to fill in. These provide information about your background and your current symptoms. The baseline questionnaires will take about 30 minutes to complete.

You will be sent a link to complete follow-up questionnaires 6, 12 and 24 weeks after you join the study. This will include similar questions about your symptoms as the baseline questionnaires.
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I got a recruitment text via my GP clinic. I note that the criteria say:

"We will exclude anyone with past or current prolonged post-viral symptoms."
 
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Long COVID is becoming a serious social and economic issue for Australia

Among the current generation of kids, many are growing up with their mother or father confined to bed or confined to bed themselves. According to a study by ANU, long COVID is hitting up to an estimated 20% of Australians three months after they contracted COVID — mostly women, but also men and children. In the current COVID wave, that means a lot of people coming down sick for a long time.
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... we see a general uptrend in people who are unable to work because of disability, which is not what we would expect in a time of low unemployment. The signal is particularly strong in people aged 35-44 — prime working years.

A recent study published in The Medical Journal of Australia suggested that the cost of the lost labour from a single round of infections in 2022 would be $9.6 billion and that hundreds of thousands of Australians would be affected.
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Sean said:
A real shame that nobody predicted this would happen and tried to warn the rest of society about what was coming...

Oh, wait. We did. :grumpy:
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This has all been a thoroughly bizarre and demoralizing demonstration that being right is entirely irrelevant, and neither do facts or reality. You can literally predict the future accurately and even when some people can't keep denying that it's happening, it doesn't even matter one bit. They just shrug. The same people who could get irrationally angry about arbitrary nonsense that would never affect their lives.

Humans are far more irrational and bizarrely self-destructive than was believed. And we were already known to be highly irrational and bizarre.
 
Seeking a member to join the NHMRC Guideline Development Group for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Date published: Dec 5, 2024, 12:22 PM
Summary
Expressions of interest are open for a member to join the NHMRC to help develop guidelines for managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Description
The Department of Health and Aged Care has commissioned the National Health & Medical Research Council (NHMRC) to develop guidelines for the management of Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS).

The focus of the new guidelines will be the appropriate diagnosis and management of ME/CFS in the primary care setting. These guidelines will be Australia’s first since the 2002 guidelines developed by the RACP working group.

The Terms of Reference are yet to be finalised. It's anticipated that the term of appointment will be approximately 3 years, starting from early to mid-2025;

  • meetings will be held online only, with approximately 8 meetings across the 3-year term
  • appointed members will be paid sitting fees based on the number of hours per meeting
Criteria
The NHMRC has contacted the College advising that they will be establishing a Guideline Development Group and have requested that the College nominate members with expertise in:

  • management of ME/CFS in children
  • management of ME/CFS in adults
  • structured rehabilitation relevant to ME/CFS
  • other experience with management relevant to ME/CFS (specify in your application)
The NHMRC will undertake their own selection process to determine membership of the Guideline Development Group.

Nominations are for individual appointment to the Guideline Development Group, with members acting in an expert capacity, not as a representative of the RACP or any RACP group.

Apply
To apply, submit your expression of interest form (DOC) and CV (no more than 3 pages) to RACPConsult@racp.edu.
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https://www.racp.edu.au/expressions...alomyelitis-chronic-fatigue-syndrome-(me-cfs)
 
An article about medical gaslighting and misogyny in Australia. Several people with ME/CFS are interviewed:

‘Devastating’: Australians lift lid on life-threatening national medical crisis

A sinister, whispered warning from a doctor left Aussie model and actor Amelia Tang convinced “they were going to let me die”.

Medical gaslighting and medical misogyny are nothing new – but it’s time we put an end to it.
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“Even when I was so sick, I hadn’t been able to swallow any water or anything else. My dad had to carry me out of the hospital and take me to another one, who also treated me the same.”

Amelia became so unwell they needed fluids via IV, but were again refused treatment.

“My private neurologist had to send a letter to St Vincents to tell them I was not malingering or faking, and to give me the IV fluids so I wouldn’t die,” they said.

“The doctor whispered into my ear that day ‘no NG tube, no IV fluids’, because he believed he would be ‘reinforcing my behaviours’ … I hadn’t been able to eat anything orally in two days. And they were just going to leave me there.
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ABC News: 'Cerebrospinal fluid leaks cause painful headaches, but diagnosis is rare'

"In short:
A retired Townsville nurse suffering from debilitating headaches has received a procedure to fix a fluid leak in her spine.

Intracranial hypotension affects an estimated five in 100,000 people but doctors believe it is widely under-diagnosed.

What's next?
Doctors and patients hope to raise awareness about the condition so more people do not suffer in silence."
 
 
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