News from Australia

https://naac-mecfs.org/me-cfs-international-conference-2021-research-innovation-and-discovery-rid/

ME/CFS International Conference 2021: Research Innovation and Discovery (RID)

NCNED has announced the 2nd ME/CFS International Conference 2021: Research Innovation and Discovery (RID). RID is a hybrid in person and virtual Conference held on the 16th and 17th of November 2020 at Sea World Resort Conference Centre, Gold Coast, Queensland, Australia. This conference will provide a platform for the latest scientific research on ME/CFS featuring international and national keynote speakers. This 2-day conference will showcase the latest research, achievements, and developments in diagnostic testing and treatment of ME/CFS whilst providing a forum for international research leadership. Discussion topics include:

• International ME/CFS Perspectives

• MRI Imaging: Application in ME/CFS

• Ion Channel Physiology: Application in ME/CFS

• Patient Perspectives & Challenges

• Clinical Presentations & Treatments

• International Research Innovation

• Research Evaluation & Translation

• COVID19 & ME/CFS

To submit an abstract to the conference please use the following link: https://forms.office.com/r/s9zquqFwCC

Use the following link to register: https://app.secure.griffith.edu.au/griffithpay/RID-2021.html
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‘Hard to accept’: Tiff Hall reveals health battle

Tiffiny Hall has bravely opened up about a long-term health battle she has been facing in an emotional post.

On Monday, the former Biggest Loser coach and mother-of-one revealed to her Instagram followers that after “gazillion tests” she has been diagnosed with chronic fatigue syndrome/ME and postural orthostatic tachycardia syndrome (POTS) – a blood pressure condition which in her case is genetic.

“I’m feeling truly grateful for all of the support and love I’ve received since sharing this very sensitive news,” Tiff told news.com.au.

“I also understand that people may have questions for me. Chronic fatigue (CFS)/ME (myalgic encephalomyelitis) is still something I am coming to terms with myself.”
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https://www.news.com.au/lifestyle/h...e/news-story/ce36187f04c824916f0a437294d78c90
 
Hutan said:
A paper from a team with links to Austin Health in Melbourne which mentions a new clinic for functional neurological disorders. The thread mentions some people in Australia of interest to ME/CFS advocates.
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On a related note, I recall that the 'Fatigue Clinic' at the Austin has (or will soon) close since they can't find someone to take it over after the last head retired. That clinic had a reputation for being particularly barbaric.
 
Sly Saint said:
‘Hard to accept’: Tiff Hall reveals health battle


https://www.news.com.au/lifestyle/h...e/news-story/ce36187f04c824916f0a437294d78c90
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There was a short story on Tiffiny Hall on A Current Affair tonight (a tabloid current events program).

Video:
https://9now.nine.com.au/a-current-...out-shock-diagnosis/ckobaqbiw00050io6yuispe5s

Text summary:
https://9now.nine.com.au/a-current-...n-battle/97565f3e-54d9-45bf-af0b-c2ee15155ee7

It is encouraging that someone of her stature has come forward about having the illness. While the story wasn't too terrible, her social media posts hint that she might end up promoting woo-woo treatments like mindfulness. I hope that proves to be incorrect.
 
Art Vandelay said:
There was a short story on Tiffiny Hall on A Current Affair tonight (a tabloid current events program).
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For A Sultana Adultery, that was quite good. They did present it as basically a women's disease, and there was no mention of LC, and it was pretty obviously a PR job as she was a Nine personality, but she was pretty forthright and they had Dr Heidi Nicholl in there and a little ad for Emerge Australia and I imagine that they'd be pretty happy with that.
 
Ask an Exercise Physiologist: Hacks for burnout and struggling with fatigue

The question:

I suffer from Chronic Fatigue Syndrome (coming up to 12 years). I was wondering if there are any hacks for preventing burn-out and CFS?

Whenever I’m overwhelmed and stressed, my exercise routine is the first thing to go. Hard to push through a weights program when I’m depleted. I’m at the gym 4-6 days a week—it’s all-or-nothing for me.

– Sammy, 28
​
The answer from the physiotherapist who says she has chronic fatigue includes: GET, CBT, pacing, communication, nutrition, sleep hygiene.

https://hercanberra.com.au/active/w...acks-for-burnout-and-struggling-with-fatigue/
 
job ad

Exercise Physiologist
Institution Info
unsw.png

University of New South Wales High St
Kensington, Australia
The UNSW Fatigue Clinic is a multi-disciplinary clinical service offering cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) for patients with chronic fatigue states, including chronic fatigue syndrome, post-infective fatigue syndrome and post cancer fatigue syndrome, incorporating psychology and exercise physiology interventions within a multi-disciplinary treatment team. The clinical service is closely linked to a research program, which conducts studies ranging from investigation of the pathophysiology of chronic fatigue states to clinical trials.

The Fatigue Clinic is seeking to employ an Exercise Physiologist who will be responsible for providing clinical exercise physiology services to patients with fatigue syndromes (chronic fatigue, post viral fatigue or post cancer fatigue) delivered within a multi-disciplinary program. These clinical services then in turn contribute to a variety of research projects being conducted at the UNSW Fatigue Clinic as part of the Clinic’s overall research agenda.
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https://uniroles.com.au/display-job/21582/Exercise-Physiologist.html
 
Ugh. I think it's worth writing to the University. It might be a good opportunity to draw attention to the quality of the research going on associated with that clinic.

There was that amazing episode of the recruitment strategy for a CFS trial that involved posters asking 'Are women with CFS ovary-reacting' - discussed here.

And then there was that very shoddy piece of work re-analysing the Dubbo study results and completely mis-representing the findings - discussed here.
 
Rules not enforced are just empty words and a profession can only claim to be based on science if it actually follows through and accepts reality, exemptions like this are exactly why they are not acceptable.

A neurological disease, categorized as such, with an immune origin/trigger is neither neurological nor immunological. Evidence is irrelevant in medicine, what matters is what evidence is accepted. They usually align, but when they don't the outcome is disastrous. This is not science and it's immoral.

 
An Australian ME patient has written a very good article on lockdowns and how people with chronic illness are ignored in more ways than one:

The true pandemic experts: "They know how it feels to be confined within four immovable walls."

People in the house-bound, Chronic Illness Community, are the real experts here. They know exactly what it’s like to have a life ripped away. They know how it feels to be confined within four immovable walls and go without hugs and human contact for months, years and even decades.
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https://www.mamamia.com.au/chronic-illness/
 
Has anyone taken a look at this beta app from a team in Australia?
https://apollojourneys.com/

Progress is possible
We’re here to help every individual with ME/CFS find the treatments that work best for them.

It’s Easy To Get Started
1. Try a strategy (From your doctor, or write your own)
2. Reflect: Tell us, did it help? (Improve? / Worsen?)
3. Check in each day to keep track of how you’re going

The Algorithm tells you how effective a strategy is for you.
Deep insights provide an understanding of what’s helping and what isn’t.
letting you focus your energy on the things that help you most.
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It is still in development.

----------------------------
Discussed on this thread: Apollo Journeys ME/CFS App
 
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RoseE said:
Has anyone taken a look at this beta app from a team in Australia?
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Not seen it, but it sounds like what in computer science is called a hill climbing algorithm. I was using that in 1993 to treat my ME, but was aware of a glaring pitfall of this algorithm - local minima and maxima cause it to deliver sub optimal outcomes.
 
Active Physiotherapy
How is ME/CFS treated, and will it get better?
In general, the following non-drug treatments are commonly recommended for ME/CFS depending on your symptoms.
  • Graded Exercise Therapy

  • Looking after your mental health - including but not limited to relaxation/mindfulness techniques, or cognitive behavioural therapy delivered by a psychologist

  • Pacing/activity modification
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How can a physiotherapist help me?
Physiotherapy (especially when delivered by a therapist experienced in ME/CFS) has been found to improve function, quality of life and reported symptoms in many people. Graded Exercise Therapy (GET) is the most commonly recommended treatment for people with this condition.
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https://activephysiowagga.com.au/bl...ephalomyelitis-chronic-fatigue-syndrome-mecfs
 
I just heard this woman speak on New Zealand radio about the Australian response to Covid-19:
WHO advisor and Professor of Epidemiology at the University of New South Wales, Mary-Louise McLaws.

She mentioned the risk of Long Covid, specifically talking about how the risks to young adults, those aged less than 39, have not been given the weight that they should have had. She said that it is these people who will raise the children and keep the economy going, and great care must be taken not to handicap them with Long Covid. She mentioned at one point 'ever-lasting symptoms'.

I think it's the first time I've seen someone in her sort of position being so explicit about the risk of Long Covid. I think she could be a good person for Australian advocates to be in touch with. @Simone
 
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