News from Australia

Griffith Uni are at it again:

Aussie researchers find a test and treatment for chronic fatigue

Griffith University researcher Professor Sonya Marshall-Gradisnik discovered the cause of chronic fatigue in 2017.

She developed a diagnostic test but needs $5 million to further her research and is hoping to begin a clinical trial of the drug Naltrexone later this year to treat the estimated 270,000 Australians with chronic fatigue.
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They found the drug Naltrexone at a very low dose of 0.5 milligrams to five milligrams stopped the obstruction of the opioid receptor on the calcium channel, allowing it to function again.

“Patients had greater cognition, greater alertness, they had less fatigue, their sleep wake cycle, and word choice was significantly improved,” Prof Marshall-Gradisnik said.

They tested the blood of patients using the drug and found their calcium channel function was restored.
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Link to full article.
 
'Long COVID' presents a major health challenge - how can Australia be prepared?
https://www.sydney.edu.au/news-opin...jor-health-challenge-how-can-australia-b.html

It's amazing seeing not only historical revisionism happen in real-time, but it's literally erasing the present as well, even the future, basically referencing a reality that never existed but is asserted to be a fact:

While clinicians are familiar with post-viral or post-infective syndromes, long COVID is new. There is no diagnostic test, and it’s likely it’s really a mixture of different conditions with different underlying causes.
...
Current recommendations are to see your GP for help with long COVID. But while GPs have experience managing post viral illnesses and there are guidelines for the care of post-COVID conditions, GPs are likely to need additional support and resources to respond.
...
Let’s not repeat the mistakes of stigmatising and dismissing earlier post-viral or post-infective syndromes like chronic fatigue syndrome. The devastating impact on those struggling to get a diagnosis, and adequate treatment and supports is still felt.​

Filed under: recognize the problem, recommend the problem, because they don't even begin to understand it. All the mistakes have been repeated, it's been 2+ years folks, the concept of preparation includes the prefix (so metameta) "pre": before. We are not in the before time.

But also: what about that mistake? We just let it continue to happen? Ah, see, no because it's all good now, apparently GPs are familiar with this, nothing to worry about, CFS has never existed, also we've always known about CFS and it's all taken care of. Big Brother doesn't even have to bother hitting someone over the heard, reminding them that it's obviously West Asia we have always been at war with. No one has to care what the record says.

see-nobody-cares-memes-png.581763
 
OzSage: Australia must plan now for a significant burden of disease and disability due to Long COVID
https://ozsage.org/media_releases/a...-of-disease-and-disability-due-to-long-covid/

Says mostly the same thing as above, but doesn't bother mentioning ME, CFS, or any version thereof. It's ludicrous to think it's possible to make progress without acknowledging the giant elephant failure in the room. Also confused about the meaning of before, I guess, since it's absurd to prepare for something that's been happening for 2+ years.

They recognize the problem, but they can't name it. You'd swear it's actually Voldemort given how nearly everyone dutifully avoids saying it, they really want to try to help Long Covid while continuing to neglect us. Not gonna happen, not possible. Either they help everyone or they help no one, and very few understand this, 2+ years into it.

We really had no chance to get out of this without LC. Not even close.
 
rvallee said:
We really had no chance to get out of this without LC. Not even close.
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There was only ever two ways we could get out of this - a major advance in the science or a major change in medical politics. LC opens a door for change but its not guaranteed. Even with a change in science, such as tests, treatment or a cure, it takes time for the political landscape to change, and will require advocacy to happen faster.
 
Excellent guide on Victoria state website

Chronic fatigue syndrome (CFS)

  • Find a doctor who understands ME/CFS.
  • The core symptom of ME/CFS is called post-exertional malaise (PEM), which is an increase in symptoms and reduction in function after minimal physical or mental activity.
  • People living with ME/CFS can experience a wide range of debilitating symptoms. They are not just “tired”.
  • There is currently no diagnostic test for ME/CFS, but doctors can diagnose using accepted diagnostic criteria.
  • The causes of ME/CFS are complex and not yet fully understood. There is no cure yet.
  • Managing symptoms with your trusted healthcare professional can help to stabilise your ME/CFS and improve your quality of life.
  • Pacing and rest are two self-management strategies commonly used with ME/CFS. The main goal of pacing is to reduce the intensity and frequency of PEM by limiting activity to the energy available. A key component of pacing is rest.
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https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
 
Changes to the laws that govern the National Disability Insurance Scheme (NDIS) came into effect on 1 July, 2022.
General changes
The Act has had updates to the language used to better reflect the way that people with disability want to be referred to.

For example, the law now refers to ‘people with psychosocial disabilities’ instead of ‘people who have psychiatric conditions’, and the term ‘psychosocial functioning’ has been removed.

Another important part of the changes in language, which could affect the experience of people with psychosocial disability and other conditions like chronic fatigue syndrome (ME/CFS), is to clarify that an ‘episodic and fluctuating’ condition can also be permanent.

This change may make it easier for people with conditions that change day to day to still get NDIS funding.
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https://www.disabilitysupportguide..../changes-to-the-ndis-how-will-you-be-affected
 
https://www.griffith.edu.au/menzies...logy-and-emerging-diseases/how-to-participate

How to participate
National Centre for Neuroimmunology and Emerging Diseases


Participate in our studies

The National Centre for Neuroimmunology and Emerging Disease (NCNED) is currently recruiting participants to take part in studies throughout 2021. Both those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome symptoms and healthy controls are required for our studies.



RECRUITMENT FOR CURRENT STUDIES
You are able to register your interest to take part in our studies by contacting us on ncned@griffith.edu.au or by phone on (07) 5678 9283 and also by completing an online questionnaire.

Below you will find PDFs relating to two studies we are currently undertaking. Please share this with anyone who you think may be interested and thank you again for your support of our research.

Ion Channel Research (PDF, 499.5 KB)

Neuroimaging investigations in ME/CFS (PDF, 627.5 KB)

Genotyping analysis in ME_CFS (PDF, 570kb)

THE NCNED ME/CFS DATABASE
The National Centre for Neuroimmunology and Emerging Diseases conducts a number of studies investigating different aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Each study may involve different tests focusing on different factors of the illness. As the first step of participating in any study, each participant will be asked to fill in a detailed questionnaire that includes questions focusing on areas including current and past symptoms and daily activities. All answers remain confidential. This questionnaire gives us information regarding which study you would be best suited to, but more importantly the information gathered is combined into a database that is analysed to help understand the public health impact of ME/CFS in Australia, and importantly the impact of ME/CFS on daily lives.

If you would like further information or to take part and contribute to the database please complete the database questionnaire.

Complete database questionnaire
 
podcast
TeleHealth cuts to hit most vulnerable

Luke Grant speaks with Anne Wilson, CEO of Emerge Australia – the national patient organisation supporting joining calls for the Federal Government to reassess its plan to cut some telehealth services and charge the cost for longer consultations directly to patients.

Ms Wilson says “since the announcement of the plan, the organisation has had many distressed calls, especially from pensioners, who were worried about not being able to pay extra fees for longer telehealth consultations as they battled with their illness.”

Now this decision includes 70 different telehealth-related consultations, 33 initial and complex specialist items and 40 specialist in-patient items.

Ms Wilson believes the decision not to extend pandemic-related telehealth services that ended on 30 June places those with chronic and complex conditions like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long COVID at increased risk due to the need for longer consultations.
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https://www.4bc.com.au/podcast/telehealth-cuts-to-hit-most-vulnerable/
 
The Victorian Chair of the RACGP has written about ME/CFS in their newsletter. Compared with the usual rubbish from the RACGP, it isn't terrible, although she inexplicably links to Flottorp et al's nonsense about the NICE guidelines in the Lancet as "interesting reading".

Message from the chair

What if I told you there was a disease that affected 1% of the population, and of that 1%, up to a quarter of them were either bedbound or housebound? That’s up to 250,000 Australians, approximately 62,000 of which are limited to home or bed.
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In the bad old days, this disease was, at best, misunderstood and, at worst, used as a euphemism for psychological distress or somatisation. Doctors used to roll their eyes – deride their patients, even.

ME/CFS isn’t a psychiatric illness, and it’s not just about ‘being tired’. It’s time to let go of old, 1997 ideas from medical school about this disease.
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Terrible, IMO. It describes what's happening right now as if it's the distant past. The bad old days are happening right now and for the foreseeable future, pretending otherwise is very much how those bad old days continue. Physicians still roll their eyes and deride their patients, it's literally all over social and news media and academic literature, with millions more added to it in the form of LC.

It's this inability to speak the real truth that prevents any progress, it's not possible to fix a broken system without voicing how utterly broken it is, which inevitably means directly blaming people who absolutely deserve blame to a level that demands extraordinary disciplinary measures, to make sure this cycle of statutory neglect and violence ends.

There is no way to build better healthcare without making the truth absolute: tell the truth, the whole truth and nothing but the truth, always, especially when it's uncomfortable. This isn't it, in fact it's the same old beating around the bush that never got anywhere.
 
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