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2025 GNG-INA Monthly Academic Meetings - 24 April 2025
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GNG-INA Monthly Academic Meeting – Thursday 24 April 2025

Note: Slight time change this month – all times below in UK Time – Check your local time zone using this Timezone

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11:30AM - 12:15PM – Webinar
Title: The de-mystification of Myalgic encephalomyelitis/Chronic Fatigue Syndrome.
Dr Lyndal Van Leer, Specialist Neurologist, Queensland, Australia Neurologist and epilepsy sub-specialist working on the Gold Coast, Australia. She has completed two Epilepsy fellowships at Austin health in Melbourne, Australia and currently head the Eletrophysiology-EEG department at Gold Coast University Health. She is particularly interested in disorders of autonomic dysfunction particularly in the post Covid Era.

12:15PM - 1:00PM – Case Presentation Title: Physician assisted suicide and Physician- assisted euthanasia: evidence from abroad and implications for UK physicians

Dr Uma Nath, Consultant Neurologist and Parkinson's disease specialist, Sunderland, United Kingdom Uma Nath is a Consultant neurologist from Sunderland, UK. Specialist in Parkinson's disease and Movement disorders. She trained in Edinburgh, London and Newcastle and qualified from Newcastle University. She has a MD in Progressive supranuclear palsy. Uma is Parkinson's research lead in Sunderland and South Tyneside. Member of Association of British Neurologists Advisory Group on Movement disorders and have worked with NICE as expert witness for approval of Produodopa in UK. Uma lectures and educates on behalf of Abbvie ltd on Produodopa. Dr Nath presented keynote lecture at ABN conference 2019 on Assisted Dying and published in this field 2021 Practical Neurology. She is President of Parkinson's UK Sunderland branch. Session Chair: Prof Vaughan Bell, Professor of Clinical Psychology and Cognitive Neuropsychiatry, London United Kingdom He is also a neuropsychologist working between psychosis and neuropsychiatry services at the Maudsley

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https://bsky.app/profile/gng2020.bsky.social/post/3lmwly5ljuk2p
 
Canberra Daily: Queensland Government to destroy ‘globally significant’ Covid vaccine study biobank

A ‘globally significant’ bank of biosamples from a study into the immune effects of Covid vaccines is set to be destroyed, two years after the award-winning research project was defunded by the Queensland Government.

Intended “to better understand the short, medium and long-term impacts of COVID-19 and COVID-19 vaccines in Queensland,” the QoVAX Safety and Efficacy Statewide Study boasted 10,000 adult participants across 86% of postcodes, both vaccinated and unvaccinated, generating over 100,000 biospecimens and 11 million data points.

With its digitally-integrated biobank and linked data repository, the study promised to enable ongoing research addressing epidemiology, genomics, virology, and immunology, as well as unforeseen complications of Covid vaccines, and long Covid outcomes.
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less than two years later, in June 2023, the study was defunded with no official explanation, jeopardising several unpublished research papers that were near completion. Professor Davies was removed as project lead, and QoVAX was handed to Queensland’s Metro North Health. Sample collection ceased, data was shelved, and government web pages for the once-hyped initiative were deleted.
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“Metro North Health has determined that, for a range of reasons including the many mutations of the COVID-19 virus and similar studies from Australia and worldwide, there is no longer a scientific and public health need to retain these biological samples for future study,” said the letter, sent 19 March 2025.

“Therefore, these samples will be appropriately sterilised and disposed of. All study data collected as part of the QoVAX-SET study will be archived for the specified time-period as required by law, however, it will not be accessed or used for any future purpose.”
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QoVAX was unique in that it was one of the only real-world studies to have access to a ‘comparison set’ of participants who had been vaccinated, but had not been infected with the Covid virus, which only took off in Queensland after the state borders opened in December 2021.

The collection of biosamples and data from this comparison set was particularly significant in light of the fact that the Covid vaccine manufacturers unblinded the placebo arms in their randomised controlled trials (RCTs) within months of the trials beginning, preventing the collection of medium-to-long-term trial data on vaccine effects.
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While the overlap between Covid vaccine injury and long Covid has been highlighted in several key studies, doctors and patient advocacy groups say there is still a dearth of research to identify the underlying mechanisms of these conditions.

”We really need to develop biomarkers to be able to make a more definitive diagnosis, both for vaccine injury and for long Covid,” said Professor Phelps.
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“Metro North Health has determined that, for a range of reasons including the many mutations of the COVID-19 virus and similar studies from Australia and worldwide, there is no longer a scientific and public health need to retain these biological samples for future study,” said the letter, sent 19 March 2025.
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«The killer must have changed his clothes and shaved his beard by now, so we don’t need the surveillance footage anymore».
 
Submission from RACGP to NHMRC in response to the scoping survey for the development of clinical practice guidelines for ME/CFS:
The National Health and Medical Research Council (NHMRC) sought feedback from general practice on proposed evidence-based clinical practice guidelines for ME/CFS. The RACGP provided general feedback outlining the importance of the guideline to address multi-disciplinary care, comorbidities including mental health, and quaternary prevention including managing diagnostic uncertainty and exercise interventions.
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Link | Full letter (PDF)
 
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Not a recommendation:
https://fortifyfitness.com.au/the-role-of-active-rehabilitation-in-managing-chronic-fatigue/

The Role Of Active Rehabilitation In Managing Chronic Fatigue

Emma Bradwell
October 1, 2024

Breaking the Boom-Bust Cycle: The Role of Active Rehabilitation in Managing Chronic Fatigue

Introduction

Chronic fatigue syndrome (CFS) is characterised by persistent fatigue that interferes with daily activities and is not alleviated by rest (Fukuda et al., 1994). This condition goes beyond just feeling tired and encompasses a wide variety of debilitating symptoms. The causes of CFS are not yet fully understood but for some people it can follow infection, toxic exposure, anaesthetic, immunisation, or trauma such as car accident.

Patients often experience a “boom-bust” cycle—periods of increased activity followed by exacerbation of symptoms, leading to a cycle of overexertion and subsequent fatigue. This article discusses how active rehabilitation can help mitigate this cycle, improve overall exercise capacity, and enhance quality of life for individuals with chronic fatigue.

Continues at:
https://fortifyfitness.com.au/the-role-of-active-rehabilitation-in-managing-chronic-fatigue/
 
Mason Foundation awards $1.44 million to fight chronic fatigue
https://www.eqt.com.au/mediacentre/...-awards-1-44-million-to-fight-chronic-fatigue


Approximately $1.44 million has been committed to support vital Australian research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

The Judith Jane Mason & Harold Stannett Williams Memorial Foundation (the Mason Foundation) is a charitable trust established by a generous donation in 2003 by Judith Jane Mason (née Williams) and named in honour of her father Harold Stannett Williams.

ME/CFS is a complex and debilitating condition, characterised by profound fatigue, cognitive impairment, and other symptoms that worsen with physical or mental exertion and don't improve with rest. Secondary symptoms may include gastrointestinal disorders, muscle and joint pain and immune impairments.

The Mason Foundation was one of the first philanthropic funders to recognise the importance of ME/CFS research, with funding directed to solving the ongoing challenge of this elusive illness, which has a devastating impact on the lives of many.

The 2025 ME/CFS research grants program will fund each of the following projects over the next three years:
  1. Dr Katherine Huang, University of Melbourne – Predicting post-exertional malaise in ME / CFS with digital biomarkers – $360,000
  2. Dr Francesca Alves, The Florey Institute of Neuroscience and Mental Health – Modelling and treating energy deficiency in myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) – $359,970
  3. Dr Benjamin Heng, Macquarie University - Validating a novel blood-based biological signature to diagnose and manage myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) – $356,694
  4. Dr Sarah Annesley, La Trobe University – miRNA alterations in ME / CFS: Unpacking the role of S6K, viruses and metabolism – $359,405.
Since establishment 22 years ago, the Mason Foundation has awarded more than $27 million of research funding for ME/CFS and also Alzheimer’s disease.

Emily Cormack, National Manager, Social Impact Team at Equity Trustees, said, “The Mason Foundation grants provide much needed and significant funding for research into a condition that is not well understood. Diagnosis is a challenge in the absence of a diagnostic test and of a universally accepted case definition among researchers and clinicians.”

“The Mason Foundation has provided continuous funding since 2005 for research into ME/CFS. We are hopeful that the ME/CFS competitive grant scheme will help our understanding of this poorly understood condition which impacts so many lives,” Ms Cormack said.
 
Message from eMerge CEO

SBS Insight program “Invisible Illness”
Emerge Australia would like to express its concern, deep frustration and disappointment about the harmful narrative presented on Insight’s program that aired on SBS on Tuesday evening (20/5/2025) about Invisible Illnesses.

Based on Insight’s positive reputation as well-researched, serious journalism, we promoted the episode to our community. We were pleased the program chose to feature the often-overlooked challenges of living with invisible illnesses such as ME/CFS, long COVID, fibromyalgia and similar conditions. Emerge Australia thanks those people living with or caring for someone living with an invisible illness who appeared on the program for their courage in raising awareness of the realities of these conditions.

We were, however, extremely disappointed by the unbalanced narrative portrayed in the episode. Ironically, the episode accurately reflected the gaslighting experienced by many living with invisible illnesses.

While many participants bravely shared their stories, the producers chose to give disproportionate airtime to one person who claimed to have recovered from ME/CFS and rheumatoid arthritis. Scientific evidence states that there is no recovery from rheumatoid arthritis and less than 10% of people with ME/CFS return to pre-illness functioning. Of further concern, this person claimed their recovery was due to attitude alone, implying that recovery is a choice or can be achieved through effort alone. There are no proven treatments for ME/CFS and there is no cure. The small number who recover are the lucky few.
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I haven't watched but I think the link is
 
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